Dr. Smak

The Nursery, part 3

2012-01-29T07:22:00.003-05:00

The nursery is ready for the new baby.

Henry's bed has been disassembled; the crib is up. His clothing is stored; hers is washed, folded, and waiting for her in his old dresser. We did leave a number of his things out, comfort items for us, but the room is most certainly not his anymore.

It was difficult, but not impossible.

Both Mr. Smak and I expressed an unexpected sense of relief at "the putting away" of his things. It brought a physical reality to the emotional moving on that we are all doing.

I see, as the months slip by, my connections to Henry weakening. It's not intentional, it's the way of all things. The longer he's gone, the less I remember. The less I miss him. The less I spend time thinking of him, thinking of sickness, thinking of his death, of the lessons his death taught me.

I have struggled with guilt over this, while knowing that this change is normal, natural, and out of my control. We were talking about it yesterday, and Mr. Smak said, "Just because you miss him less now, doesn't mean you loved him any less then."

I thought about that all day...it was so profound, and comforting.

The Nursery, part 2

2011-12-28T12:27:00.002-05:00

So this weekend we tackled Henry's room. We packed up his dresser full of clothes, and several toys, before we had to stop. It was okay. It made me remember a lot of things that I had been tucked away in my memory, and it made me sad, but I felt ready to do what we did. There's a good bit left to be done, we will get to it when we get to it.

The baby's due date is less than 8 weeks away. Henry's illness and death has tainted the joy of this approaching event, but no more than the way it has tainted the rest of our lives. I find myself thinking things like, "If I buy a bunch of diapers and the baby dies, I'll just have to return them." My next thought is "What the hell is wrong with you to be thinking that way?!" followed closely by "Why wouldn't you think that way, after what you've been through?" I'm doing my best just to follow my instincts, both maternal and self-care, and so far it is working for me.

We haven't named the baby yet. Historically, we always have a name by now. There have been multiple names, and multiple lists, and a lot of toggling of positions, but we don't have one. I wonder if we're just not ready to commit yet.

I have knitted the baby a sweater, and a pair of booties. I haven't yet purchased a single thing for her. The girls are eager to start; today may be the day.

The Nursery

2011-11-19T13:13:00.004-05:00

Henry's room looks the same as the day he died. Ok, not entirely true, it's a little cleaner, but his bed, toys, clothes are all where they should be.

I don't go into his room often, but I crave it at times. It helps me feel close to him, to dust his dresser, touch his blankets, look at his clothes. I'm always sad when I do it, but I usually only go there when I'm already sad.

His ashes are in there as well, in a handsome wooden box with his name on it. I've only picked up the box twice since he died. It is not soothing to me to hold it, but I like it being in the house.

We're T-minus 13 weeks to baby, presuming she shows up around my due date, which the other three did. I've written before that I wasn't ready to prepare for her, plan for her, get excited for her arrival. Lately, I've been feeling like it's getting to be time.

I had thought that cleaning out Henry's room and preparing for the new baby were flip sides of the same coin. They aren't. I went into his room this morning to try to make a stepwise plan of what to do to begin the transition from his room to hers. I couldn't. I don't want to put away his toys. I don't want to store his clothes. I don't want to paint his walls. I don't want to give up the closeness, the connection that his room gives me.

I was waiting till I was ready. I don't think I'll ever get there.

Fall

2011-11-14T17:16:00.002-05:00

Henry's diagnosis and relapse both occurred in October.

Who doesn't love fall? The gorgeous blue skies, the turning leaves, the crisp smells in the air. This year, I've liked fall again, the first time since his diagnosis. I haven't had an immersive fall experience, ie hiking and biking and spending time on those beautiful days outside, but that's been because of a busy life and a pregnant body. I can imagine myself loving fall by next year.

This year we traveled to the mid-west to spend time with my in-laws and extended family. I hadn't been there since we traveled with Henry, within 6 weeks of his death. He really enjoyed the trip, and though the rest of us knew the end was coming, at that point we didn't know how quickly. Generally, he was feeling pretty good then. It was a blessing that his deterioration was so brief.

I was surprised by my response to being out there. I avoided the activities and places that made me remember him; they were too painful. I completely lost it one day and had to excuse myself for quite a time of private sobbing. That hasn't happened to me for a long, long time.

I realized that though he's been gone for two and a half years now, it was the first time for me that he was dead, out there. The first time I saw my in-laws' home with photos of their dead grandson on the walls. The first time I saw all the cousins out trick-or-treating, without him. The first time we saw the extended family since he died.

The firsts have always been the hardest.

Since we've been back, he has stayed in the forefront of my mind. His presence generally comes and goes; for most of summer I did not dwell on him regularly. Since our trip though, he's in my thoughts all the time.

I still can't believe he's gone.

Updates

2011-10-19T18:00:00.002-05:00

A news-y post, unusual for me. But lots of small things I want to record.

First and foremost, the ultrasound went well, we are expecting a baby girl. The inevitability of a new addition to our family grows with my figure, and I am admitting a joy I have not felt often in the last few years. It's a good feeling.

There are some reading updates I wanted to give:

A blog: a fellow grieving mother referenced this blog post. It is very raw, and very real, and very touching.

An article from the New York Times on what it is like to parent a child with a terminal illness. This, unlike the previous one, did not leave me in a puddle of tears, but was equally raw, and real, and touching.

And two books. The first, called The Leftovers, by Tom Perrotta. I've not read his work before, heard about this one on NPR. It's the story of a the people left behind in a town after what appears to be The Rapture, but there doesn't seem to be a real pattern behind who disappeared and who didn't. Though I expected some sarcasm, the book is a real exploration of grief and loss and unmet expectations. While far from profound, I definitely found it thought-provoking. Much more than a religious rapture, it made me think about a disaster's effect on a community, ie the Japanese tsunami.

The second I'm not finished with yet. I'm probably the last person in America who has not yet read The Help by Kathryn Stockett. Technically, I'm listening to it on audiobook, anyway. After hearing many many people rave about it, I'm a bit disappointed. The reading is quite entertaining; there are several readers with different voices doing the narration. I also find the subject matter interesting, but the characters are so very unbelievable and caricatured to me that I had trouble with the first third of the book. I'm about 2/3 of the way through now, and the storyline, even with it's predictability, is getting good enough for me to forget some of my objections. I'll definitely finish it, but not a big fan.

And one I intend to read: The Marriage Plot, by Geoffrey Eugenides. His characters are the opposite of caricatures, I'm so glad he is publishing a new book. I may or may not like it, but his writing is so good that I'll enjoy reading it either way.

Rainy weekends

2011-09-23T02:37:00.003-05:00

A long time since my last post. The catharsis of blogging, the need to explore my feelings, both for myself and to share with readers, greatly lessened. Hard to say why.

Grieving continues, it always will. I do feel that I have plateaued, that this may be where I land. When I am busy and engaged in life, most days I feel mostly happy. Sometimes, even when busy and engaged, the grief is there very close to the surface, like a non-healing wound covered by a very thin layer of recovery. It's a wound that I am used to, that I can live with, that I can cope with and still get through my day.

Too much quiet is still very hard. Lazy rainy weekends, sleepless nights, too much car time, all give my mind opportunity to re-enter the deep well of grief that will never dry up. Avoidance is useful. I still knit, a lot, to fill that quiet with a little noise. I watch more TV than I ever have. At a grief group, one bereaved family last fall related how they went to go stay in a hotel for a holiday weekend, just to not be home and deal with the emotions there. They looked around at the hotel lobby at the other patrons and wondered to themselves, "What are you all running from?" I think about this often. Those people who schedule every second, who overcommit, who never take time for themselves, I used to see as superhuman, as better than me, an introvert who enjoys quiet/lone pursuits. Now I wonder what void they are trying to fill, what it is they don't want to think about as they sit in their living room at night.

My life continues to have many many blessings, and now one more. We are expecting a baby in February. After what seemed a rocky start, all seems to be going as planned. I am most definitely avoiding getting emotionally committed to this child, which seemed appropriate early on, but now that I am visibly pregnant and feeling the baby move seems less so. The emotional roadblocks are everywhere; for now I am intentionally ignoring them. I know that I'm not stunted, I will be ready when the time comes, but for now thoughts of getting the baby's room ready, or of even having the joy of another baby when my last baby was Henry, puts me in a tailspin. Additionally, we have our official ultrasound next week. My conscious self is excited, wants to see the baby and find out the sex; deeper, I'm treating this like one of Henry's MRIs, waiting to hear the news that all is so very not well, while trying my damnedest to be optimistic but already feeling that pain.

It looks to be a rainy weekend.

Reflections

2011-05-14T05:55:00.003-05:00

We had our last bereavement group of the season last week. The group is ever-changing, but there has existed a core of 4 familes for a few months now. There is a kinship there that I've not achieved anywhere else. We all know. We all get it. Our children were different ages, different sexes, died of different causes, but the shared experience gives us an instant understanding of one another that few others will ever have.

Last week our moderator asked us to reflect on how we have changed, what we have learned, from our experience as a bereaved parent. There were several things mentioned, and much overlap as expected. These stood out for me:

1. We see the world differently now. Not better than we did before, but differently. We feel more now. When I used to read a news story about a tragedy, whether a child lost or a natural disaster, it was a news story. A bit of pity flashed in my brain, and was gone. Now I feel it. The tsunami, Japan's earthquake, the local teen who died of a seizure in the bath tub...those things hit me in a way they never did before.

2. Grief is what it is. You can't control it. You can't outrun it. You can't out-think it. My mind spent a lot of time trying to find a way to get away from grief. Nothing worked. Knowing this doesn't make it easier to deal with grief. I guess that's the lesson. Nothing does. It is what it is.

3. Finally, what I'm still struggling to learn: life goes on. Not his life, but everyone else's. And I need to make a decision every single day on how to deal with that. As one father put it, "My other children are still growing up." We didn't get the choice on whether or not our children would die, but we are blessed with having other amazing, vibrant children to love the rest of our lives. I cry that Henry never got to go to school, but I will go this week with my middling on her field trip. I don't want to miss out twice. And I don't want her to miss out on having a present mom.

Being a bereaved parent hasn't made me a better person, but I'm different than I was.

Evan

2011-04-20T19:17:00.004-05:00

His parents asked my permission before transferring him to my practice. They knew about Henry. I said I would take him before I thought about it, and then wondered about it. About a week later I was having a rough few days and decided that it was a bad idea....but things improved, and I didn't call them to cancel.

Evan (not his real name) was diagnosed with his cancer about the same time as Henry, at about the same age. He has done well. But that I mean he is currently growing, active, and cancer free.

I think on the wrong day I would have struggled with this visit. It made me miss Henry, but somehow in a pleasant way. I was able to wonder what he would be like at this age. Evan is struggling with some physical symptoms, some post-chemo sequelae..."Small potatoes", as his mother said, but still there nonetheless. He asked my nurse if she was putting in a PICC line when she brought in his shots. There is a lot of "Cancer" still living with that child, even if the cells are all gone.

I dreaded that possibility with Henry. I would trade it in a second to have him back, but I am able to be grateful that I am not Evan's parents, living with the "is-it-back" check up every three months. What a horrible burden to carry.

I shudder to think of the possibility of me needing to break any sort of news about a future recurrence. Some things are best left not worried about, I think this is one of them.

As a primary care doctor, you care about all of your patients, but you really relate to a select few. He and his family will be one of those for me.

Battlefield

2011-04-03T17:15:00.003-05:00

After Henry died, there was the usual business of visitors and planning his funeral services. We went through those days in pain but with purpose. As always happens, though, life flows back into the lives of those around you like the tide coming in, but you who are grieving are left in unfamiliar and unpleasant territory. For you, the tides have stopped.

I think it was our first weekend alone as a family after his death that we went to a local Civil War battlefield to ride bikes. It was horrible. I spent the whole day in daze, realizing that this was now what my family looked like. Henry wasn't here, and he never would be again. The day was full of hurt and tender grieving. When faced with the option of sitting at home doing nothing but grieving all day, the bike ride seemed a welcome option. Busy grief has proven to be easier to bear than non-busy grief, at least for me.

Two years have passed. We went back today to ride again, the four of us. Spring in the air, glad to be out of the house at last, we had a blast. The scenery was beautiful, the cool air not too cool, the exercise welcome to winter-weakened legs.

We laughed. We laughed so hard that at least two of us might have moistened our undergarments (but I won't say which two). There was no heaviness, no hurt...a family of four, out for a wonderful spring day. He was not with us today, the way he was the last time we rode. I tear up to say that, but he wasn't. Today it was just us, and it was really fun.

It is what it is. It doesn't mean we don't love him, and miss him desperately. We do. But we are moving on without him.

Losing My Religion

2011-03-22T17:50:00.002-05:00

Feh, the title just sounded cool. What a great song, never have figured out what the heck it's about.

Some comments were made on my previous post, about needing or finding god to help me heal.

I think those comments were made knee-jerk, and without much thought, and certainly not with malintent. DIY is not the first or the last to think or say things like that. Here in America we live in a very theistic society, the vast majority of Americans believe in a Judeo-Christian god even if there is not formal religion, and most Americans find atheism bizarre and boogeyman-like. It's a stretch for a lot of small-town America (where I live and work) in particular to recognize the diversity in our country. Sometimes I feel like whipping out my can of atheist whoop-ass when people say knee-jerk hurtful things, but I never do.

In my many conversations with other grieving parents, what stands out to me is that no one has it figured out. Parental grief is parental grief whether you pray or not. I sometimes picture myself if a huge void of nothingness searching for someone who has the answers, only to see the shrinks, the Christians, the nihilists peering back at me for the same answers.

There is no where to go with grief. It is what it is.

One could argue that there may be those with a better grip on existential pain than I have. People with better answers to "What's it all for?" than I do. People who are more skilled at looking at this life fully, calmly, and openly and being able to handle, or even embrace, the uncertainty and meaning of it all.

But not so with grief. It's there, whether or not you want it. There's no prayer, or pill, or pop-psych book that makes it easier.

That's me in the corner
That's me in the spotlight, I'm
Losing my religion
Trying to keep up with you
And I don't know if I can do it
Oh no, I've said too much
I haven't said enough

PS The one comment that I will choose to be judgemental about was the one made that god sends us trouble to remember him. Whatever you may or may not believe, please NEVER say that to someone whose child has died. It is deeply hurtful.

Guilt

2011-03-05T07:46:00.003-05:00

I've written before that I'm not much for guilt. I didn't have a Catholic or a Jewish mother to serve it up to me. And, as an atheist, there's a whole category of "shoulds" that doesn't exist for me.

But I've always been a sucker for hubris. I remember before Henry got sick thinking that I finally had everything that I wanted in life and that I better be grateful, because if I wasn't the universe may be inspired to take something from me, just to teach me a lesson. Humility and graciousness were intergalactic shields from badness.

Then the badness.

And now, I am quite certainly post-badness. I have a devoted husband, two beautiful, inspiring, amazing, healthy girls, a fulfilling career and a good job to go with it, all the creature comforts I need, and great family and friends.

I have a hard time not equating my grief with being ungrateful. My life, outside of Henry's death, is so wonderful that I should have trouble with sore ribs from the constant gleeful laughing that I can't contain. I feel that if I can't corral my grief, I don't deserve what I have.

What if I lose something else? Will I look by on myself and think, "You stupid schmuck. Why didn't you just appreciate what you had left?"

Naivety

2011-03-05T07:31:00.003-05:00

It wasn't so much a New Year's Resolution, but after the turn of the year, I felt a shift. I have been feeling so very grief-focused for the last two years that I have a sense of loss of control over myself that is uncomfortable. I was beginning to feel that it was time to move on in my grief, to try to feel less angry, less afraid, less picked-upon-by-the-universe, and more stable, more gracious, more able to say to myself and anyone who wants to hear, "My son died, but I'm moving on with my life and using my experience to become a better person."

As the anniversary of Henry's death approached, the grief took over again. It's akin to watching my patients struggle with substance abuse, they may do well for weeks but a slip will remind them that they are not in control. The analogy breaks down in a lot of ways (not as many depending on your theory of substance abuse) but the loss of control is the same. I feel at the whim of my grief, not able to manipulate my life in the way that I want to.

As the anniversary fades, things are better again. But it's left me feeling somewhat naive for my optimism of January.

Book Review: An Exact Replica of a Figment of my Imagination

2011-02-26T14:20:00.002-05:00

I don't remember where I heard about this book. I remember hearing, a few months ago, that was a somehow uplifting book about a woman's experience of grief after her full-term baby was stillborn. I tucked it in the back of my head, but didn't buy it till last week.

Most books/experiences related to the loss of a child I approach like wild animals, cautiously, and slowly. They seem so unpredictable, some helping, some hurting. I opened this one, and read a few lines, and it didn't hurt. So last night, after commemorating 2 years that Henry's been gone, I read it cover to cover in one sitting.

There is no pretense in this book. No hiding, no prettying up, no intentional emotional highs or lows. It is what it is. Elizabeth McCracken writes of her loss and grief so matter-of-factly. It really feels like sitting down, with a real person, and talking, for real, about what it's like.

The differences between losing a full term unborn child and losing a four year old are vanishingly small. The details of the loss don't matter, the loss is the same. She hits on so many things that I have thought and said myself. I felt so validated, less alone in reading this.

A few passages that really spoke to me:

I don't want those footprints framed on the wall, but I don't want to hide them beneath the false bottom of a trunk. I don't want to wear my heart on my sleeve or put it away in cold storage. I don't want to fetishize, I don't want to repress, I want his death to be what it is: a fact. Something that people know without me having to explain it. I don't feel the need to tell my story to everyone, but when people ask, Is this your first child? I can't bear any of the possible answers.

And another:

Once you've been on the losing side of great odds, you never find statistics comforting again.

And another, where she voices the struggle between the loving and remembering mixing in with the regret and anger:

His entire life had turned out to be the forty-one weeks and one day of his gestation, and those days were happy. We couldn't pretend that they weren't. It would be like pretending that he himself was a bad thing, something to be regretted, and I didn't. I would have done the whole thing over again even knowing how it would end. (Would I really? It's a kind of maternal puzzle I can't get at even now: he isn't here, and yet how can I even consider wishing him away? I can't love and regret him both.)

I hesitate saying that "I recommend" this book to grieving parents. We are all so different, our experiences and family cultures so different. But I will say that I found this book profoundly honest and somewhat comforting. I'm very glad I read it.

Henry IX

2011-01-31T19:58:00.006-05:00

Mr. Smak and I have been watching The Tudors, courtesy of Netflix streaming over AppleTV.

We're both enjoying it, lots of political intrigue and character building (and a bunch of good-looking naked people). Wow, can't imagine what would have happened when someone brought gonorrhea to court. Wildfire. Anyway, it's the story of Henry VIII, and his court, and his wives (we're still on wife number one).

In a recent episode, Henry's bastard son, Henry, died suddenly, at age 4. They showed him, pale and bathed, gently lying in bed. The parallels were uncomfortable (but have happened often enough by now that they were tolerable.) The scene was first of his mother, and her seeing his body, and then of the king's grief.

Even as we spend time in a cancer sibling support group, it's often that we are the only bereaved family. Childhood leukemia, thank goodness, has cure rates over 90% these days. 90%! Forgive my apathy, but it doesn't seem that should be in the same category as advanced neuroblastoma, or the various brain tumors, or the soft tissues cancers that require surgeries and extensive chemo with long term side effects.

Anyway, back to The Tudors...I found myself strangely jealous that this mother of Henry would be in the company of so many other women who had lost a child, due to the era. That she wouldn't be the only one. Having a child die is so isolating today. It just doesn't happen to people.

Unsettling to find myself wishing for more bereaved parents in the world. Guess I'm still struggling with the "why him?" of this, though I try to convince myself that I'm not.

I think I can understand more the attachment to community and place that people have after experiencing a disaster. I've always thought that if I went through a community tragedy (ie Katrina) that the impulse would be to get away. No one would understand as well as those who have lived through it too. I guess that's my pining, still feeling somewhat alone in this journey. The last thing I want is more childhood death, from any cause...but I wish for that unspoken understanding a little more often.

Forgetting

2011-01-31T19:46:00.004-05:00

It's been a long time since I've blogged.

I haven't felt the need. I've thought of it many times, but I've not craved the release that this blog gives me.

This belies that things are going well. I was going to say better, but really, things are going well. Grief is settling in to the back seat of my life, always there, but not much in the way. I can navigate around it most of the time. I still show it the respect it deserves, as I find that if I ignore when it starts to ask for attention, things can get out of hand. Small doses of it seem to keep it manageable.

I continue to have some very dark times, but they are less frequent, and the good times are really good now. The girls are great. I'm so pleased with Mr. Smak's progress; I'm seeing joy from him now too, and it was a long time coming.

It's beginning to build again. The second anniversary of Henry's death is near the end of February. I had considered trying a distraction technique this year, not talking or thinking about it much, like the dentist who talks your ear off while he extracts your tooth. This weekend the girls asked what we were going to do, so that coping strategy is off the table.

My middling said, "I feel like we're forgetting about him sometimes." I do too. I have still not learned how to balance the remembering with the pain. I cannot separate them.

I don't know what we'll do. Last year we all went to a museum together; the distraction and family time was useful for us, but it caught me eventually, and it was a very difficult day in the end. It is a day to remember, even if it hurts.

The Holidays

2010-12-21T19:00:00.005-05:00

The holidays are tough for grieving families. They're tough for a lot of people, really. There is so much expectation, so much obligation, so many memories to replicate and create.

In our last bereavement group we talked about how they are hard, and why they are hard, and how to make them less hard. I think part of why they hurt is that we're not used to having Christmas without Henry. We're used to not going to the grocery store with Henry, but this is only our second Christmas without him.

Last year we went out of town, to a cabin we'd never been too before. It was a very good decision, and made the holiday bearable. We'll be home this year, and I can feel the heaviness setting in my chest again. I've been very tearful this week.

It's such a struggle to honor his memory, honor our love of him, yet not feel so profoundly sad about it all of the time. Some days I push him away, to avoid the sad and hurt, but not on Christmas. This year, like last year, we assembled a small tree in his honor. It's got "his" ornaments on it, as well as a number of small wooden toys he assembled and painted during his last few months. This was a favorite activity of his.

We've also added a candle. I read another bereaved parent blog who described how her family used a candle to commemorate their son and brother, and thought it was really nice. I feel a need to be able to communicate with my family that Henry is really in my thoughts on a given day, without needing to say something sad that can easily affect everyone else's moods. It's a neutral expression of love for him. It's also really nice to walk in the room and see the candle lit and realize that someone else who loved him was thinking about him too.

Innocence

2010-12-19T07:00:00.003-05:00

Death is at your doorstep
And it will steal your innocence
But it will not steal your substance.

You are not alone in this
You are not alone in this
--Mumford and Sons

Last week my 95 year old grandma died. I flew to Portland to try to be with her as she passed, and also to try to get a grip on how to handle her estate, as I am executor now from 2500 miles away.

It was an altogether unpleasant experience. She, though largely comfortable, held on for a lot longer than anyone expected, to no one's benefit. The upcoming act of distributing/dismantling 95 years of collected stuff that no one else wants feels incredibly heartless. Her aloneness for the last several years, to a large degree self-imposed, was equally sad. How does a woman who has photos of family all over her home end her life so alone? There is a disconnect there that I'm not sure I understand fully, and never will.

I've decided I'm going through a premature mid-life crisis. There has been so much sickness and death in the last 3 years for me. It has stolen my innocence. I don't mind it so much, it's just another stage of life...but helps me understand why I see my peers approaching this stage of life differently.

Henry's death was so tragic, so heart-breaking. My father's death was not, but reminded us all how tragic and heart-breaking his decade-old head injury, that took him from us, was. Mimi's death was the opposite of tragic, it was time for a woman who had lived independently to the age of 95 and whose health was starting to fail to die. It was her life that was the sad part.

Mid-life crises are supposed to be about fearing death. I don't fear death, I fear a sad life.

But you are not alone in this
And you are not alone in this
As brothers we will stand and we'll hold your hand
Hold your hand

Middling

2010-12-01T22:24:00.002-05:00

My middling suffers from anxiety. Mild anxiety. Scary movies, thunderstorms, news stories about people dying or hurting each other often came up again at bed time. We've had to shelter her from those things where possible, in ways we never had to do with my tween. It's been what I consider fairly typical: dark basements, heavy wind, unrecognizable noises at night. Around Henry's death it was worse; we couldn't say the word "fire" within a few hours of bed time or she couldn't fall asleep. Hurricanes, tornados, tsunamis all chased her as she lay in bed. Not to mention the kid in her class who watched too much History Channel telling her OVER and OVER according to the Mayans the world was ending in 2012.

That's all gotten better lately. In fact, we've been able to watch the Harry Potter movies with her, which even 6 months ago she couldn't have tolerated. She is now able to identify that as fantasy and cope with the fear that it gives her as entertainment.

This week she and her sister got into a tiff at bedtime. It was insignificant, but left her feeling upset. Which prevented sleep. She got tucked in twice, shed a few tears, and I thought she was off to la la land.

I was in my living room, knitting and unwinding as I do at the end of the day, and she walked over to me, looked me straight in the eye and said,

"How can I overcome my fear of dying?"

I made her ask me twice more, at first thinking she was joking. She had a small smirk on her face, but she does that when she's embarrassed. She sat on my lap and we talked about 15 minutes, and she asked to fall asleep there.

It was the first time since Henry died that one of my children fell asleep on my lap. It was really nice. As she pointed out before she fell asleep, she's too big for me to carry, so I had to wake her to take her back up to bed.

I found her question so profound. Of course that's what all the natural disaster angst has been about. I just didn't know she realized it. She said to me, "I think when you are dead you're just gone," and I didn't argue with her. She was afraid of her 9th birthday coming next week because it meant she was older, and therefore closer to dying. And she asked me about Henry's room. She didn't specify what she was getting at, and I didn't press...I think a lot of the time she doesn't know, and I didn't want to push her. But I think his room bothers her. I feel so blind to that...it makes me sad to see his empty room and his ashes on his bookshelf every time I go up the stairs...but his door is right next to hers. She sees it more than I do. How vapid of me.

I didn't give her answers; I don't have them. I told her that even grownups are afraid of dying. I told her that I don't know what we will do with Henry's room. I told her I get sad and scared too, and try to think about other things. I told her that's why I knit so much. She thought that was funny. I wonder if it would have been easier to have some answers: afterlife, souls, heaven....but those answers beget new questions as well.

My middling is a thinker. She always has been. I'd like to think that she gets that at least in part from me. It's fun to see her brain continue to mature, to let her cognitive abilities catch up to what she tries to understand. When she asked me that question, I couldn't breathe for a second. But I'm proud of her.

Weekend Away

2010-11-21T16:32:00.004-05:00

This weekend Mr. Smak and I attended a parent weekend for parents of kids with cancer or kids who have died of cancer. It was a new event for us.

There is always an element of dread when we are going to our bereavement group. It is often so painful, and the anticipation of emotionally "going there" is tough. The actual group experience I find cathartic, though frequently draining. So I wasn't sure how an entire weekend of grief work would be survivable.

It was a different group altogether, run by a different organization than our sibling/parent bereavement group. I'm not sure why I had the impression that it would be largely bereaved parents, but we were the clear minority. It made me uncomfortable. My husband and I are not what I would have wanted to look at while Henry was in treatment. There is enough possibility of your child's death staring you in the face without a bereaved family adding to it.

However, several members of the group were gracious, and warm, and embracing of me, as I sat blubbering through the first 20 minutes of our icebreaker. And then the blubbering of the next hour. I was quite close to hiding in my hotel room for the weekend...it was difficult to emotionally navigate the different needs of the bereaved parents (grieving, healing) and the treatment parents (anxiety, ongoing medical needs).

Mid-day we had to excuse ourselves to attend the funeral of a friend. Maury died of lung cancer last week, 3 months to the day after her surprising diagnosis. She was very close to and dear to Henry, and embraced our family through his illness and death and the aftermath of our grief. It was hard to say goodbye to Maury, because it meant saying goodbye to another piece of Henry.

We returned then to the ongoing parent weekend, and I had by then apparently cried enough that I was ready to laugh for a little while. Luckily, one of our tablemates had brought along this which loosened everyone up a bit.

It ended up an enjoyable weekend. We made some new friends, and I spent more time thinking about Henry than I usually do, which is good for me. And when we got home, the bright faces and smiles of the girls were warming to my heart.

Not surprisingly, death has been on my mind of late, and the weekend clearly accelerated that. My new musical interest, Mumford and Sons, seems to choose death as their topic of choice. Great band by the way, a funky rock/Celtic/bluegrass mix. And while the music is melancholy, it's not depressing. To me it seems to embrace death as the natural consequence of life. Which of course it is. But most of us (yours truly included) have trouble coping with that.

In these bodies we will live,
in these bodies we will die
Where you invest your love,
you invest your life.

Crash and Burn

2010-11-13T17:20:00.003-05:00

My novel has officially crashed and burned. But, I get the value of NaNoWriMo. The pressure of daily writing really makes you focus in a way I wouldn't otherwise. I intend to pick it up again (though, was supposed to be doing that today and NOT going to happen, so we'll see). Having not written anything longer than a blog post since high school, it is clear that plot and character development leave me a lot of room to grow. A good thing to learn.

Grief-wise, this has been an unusually quiet month for me. Especially considering the time of year, the anniversary of both Henry's diagnosis and then the next year his relapse. I feel much more settled, much more able to feel happy. My laughter is real again, instead of forced. For a long time I pretended to laugh, more for myself than for others.

I am struggling with my age, more than I ever expected to. I guess many people struggle with aging as 40 starts to breath down their neck; maybe my experience is no different. I think that Henry's death makes me feel that I am leaving for good that part of my life where I was the parent of a young child, and I wasn't ready to give that away. I look at the faces of parents of young children around me, and they all look so much younger than I.

Maybe I would have felt this way if he had never had cancer, but knowing myself, I don't think so. I feel that I am able to embrace the girls growth and development, I don't find myself yearning for when they were younger.

Maybe the lines around my eyes, the sag of my abdomen, the ache in my back would have mocked me anyway, even with three healthy children.

I feel that a door is closing.

NaPieSweJoMo

2010-11-03T17:38:00.003-05:00

NaBloPoMo has starting. That's National Blog Posting Month. You have to post every day for a month. Definitely not going to do that one.

NaNoWriMo has started also. I'm jumping in and trying this one, write a novel in a month. In the spirit of the thing, I fully expect it to be AWFUL and never let anyone see it, but you have to start somewhere, right? I do have aspirations of writing fiction, I always have. I made myself promise that I wouldn't write about me, about Henry, but I have the imagination of a slug. I'm really branching out and writing about a kid who's best friend gets cancer. Yah me. Sounds like a picker-upper.

NaKniSweMo is sort of ongoing. I'll never make that one either, but I'm ok with that. Knitting needs to be relaxing for me.

The title I just made up. Might be fun, though. Something about pies and exercise?

Three years

2010-10-12T17:44:00.004-05:00

Landon has died.

MacKenzie is dying.

I saw a patient today, who I have seen for years. For the first time, she referenced her daughter's death to cancer, 7 years ago.

Tomorrow is the three year anniversary of Henry's diagnosis.

It seems everywhere some days.

Fall has been brutal for me for three years now. Aching, raw, making me want to close my eyes and look away till it's over.

Hoping that I'm not speaking too soon, this year is better. So much better. I am beginning to feel happy, satisfied again, on a consistent basis. And I'm not struggling with too much guilt about that. A much better place to be. I see the same on the faces of my family. The girls are confident, poised, happy, their constant underlying anxiety gone. My husband continues to have rough days, as do I, but overall doing well. It has been some time since one of us hit one of those really hard patches where it felt like you just weren't going to make it up for air again.

I wish I knew what to say to their mothers. I of all people should. But I don't know why this year is better. Honestly, I think it's just time.

There is nothing to do but to keep going, and wait.

Half Empty

2010-09-29T16:07:00.004-05:00

I heard another very striking interview on Terri Gross' Fresh Air last week.

She does fabulous interviews. I don't always enjoy her subjects. She seems to have a fascination with newly dead or dying country/blues musicians (not ShaniaTwainCountry, but WalktheLine Country). I'm not into that, so often skip them. And, in my humble opinion, she has way overharped on the Bush-dragged-us-into-this-war-and-he-lied-a-lot topic over the last few years. I don't listen to most of her interviews.

But when I like her subject matter, she does a great interview. In this case, maybe too good. I found her interview with David Rakoff amazing and affirming for me. So amazing and affirming that I immediately went home and bought the audio version of his new book of essays, which I feel lukewarm about as a composite. Terri did such a good job covering the best essays of the book that the 15 minutes about the Tomorrow House at Epcot just didn't float my boat in comparison to how the author feels about his second primary cancer before the age of 50.

David Rakoff is a gifted satirist, equal parts comic (generally deprecating, self or otherwise) and cynic. The cynic is the part I like and identify with, I guess. (Disclosure: I also appear to have a predilection for gay, Jewish men? Not sure what to say about that....) I'd never heard of him before. He's apparently frequently appears on PRI's radio show This American Life, in addition to his writing for magazines and his own published books of essays.

Their interview covered his feelings about cancer, about death, and the anarchic disregard that the universe has for all things human. It was more than music to my ears. It's what I've been looking for, someone else who thinks like me. Why is that so validating? I don't know, but it was. I found myself wanting to text IKR* to him with every new sentence of the interview.

Does it bother me that talk about cancer, death and anarchic disregard is what I've been craving? Maybe.

I'll include a couple paragraphs from the interview about his newly released book, Half Empty, posted on the NPR website.

"Writer Melissa Bank said it best: 'The only proper answer to 'Why me?' is 'Why not you?' The universe is anarchic and doesn't care about us and unfortunately, there's no greater rhyme or reason as to why it would be me. And since there is no answer as to why me, it's not a question I feel really entitled to ask. And in so many other ways, I'm so far ahead of the game. I have access to great medical care. My general baseline health, aside from the general unpleasantness of the cancer, is great. And it's great because I'm privileged to have great health. And I live in a country where I'm not making sneakers for a living and I don't live near a toxic waste dump. You can't win all the contests and then lose at one contest and say 'Why am I not winning this contest as well?' It's random. So truthfully, again, do I wish it weren't me? Absolutely. I still can't make that logistic jump to thinking there's a reason why it shouldn't be me."

This is EXACTLY what is in my head most days. I've won every contest but one. Granted, it was a fricking big one. But still...

I continue to struggle with this on a daily basis. Of course, it's "Why Henry?", not "why me?", and Henry obviously lost his own biggest contest. But those who loved him continue to carry his life and death with us every day. Every contest but one. I want to learn to embrace my grief, to accept it as part of me and move on. I need to stop trying to flee from it. It's part of my game, like playing basketball with a broken wrist. I'm still playing. And it's worth it to keep going.

Mr. Rakoff, you interview too well. It made your book somewhat superfluous. But as someone searching for as many kindred spirits as I can find, I thank you.

*IKR For those of you without pre-teens, it's "I Know, Right?".

Speeding

2010-09-28T21:34:00.004-05:00

This memory has been on my mind the last few weeks.

We took a long weekend at the beach. This was during his recovery from his more intense chemo, he was feeling pretty good, but didn't have a lot of stamina. One way he coped was to spend a lot of time on various wheeled vehicles. So we took his "mogocycle" many places with us, including the boardwalk.

He took great pleasure in chasing off the seagulls. He would clear them out, and then when they landed again, he chased them off again.

At one point, he slowed to a crawl. My daughter asked what he was doing. He looked at her, incredulous. Secretive. As if she didn't know.

Whispered, "The policeman is here...I don't want to get a ticket."

Sure enough, a uniformed officer had just arrived.

**I have a measurable amount of angst publishing this. It's painful to go through old photos and videos, I inevitably get hit with one I wasn't expecting that I wasn't ready for. And I have a weird hangup about enumerating my memories of him. So I am considering this a trial run.

Hi Ho Cherry-O

2010-09-06T13:50:00.003-05:00

We recently learned from a friend that she has incurable lung cancer. She's been given less than a year to live.

I wouldn't call her a close friend, we've not known her very long. But she is a true friend, says what she means, does what she wants, and has meant a lot to our family. She became very involved with us during Henry's illness. She was invaluable in many ways.

(If I had a bit of a persecution complex, I'd advise everyone to quit socializing with me. I seem to be a human talisman of death and destruction the last couple of years. I wonder, is it just my age? I'm older, I know more people, bad things happen all the time...but it really does seem excessive.)

In our first conversation after her diagnosis, she said to me, "I know you don't believe what I believe, but one of the things that comforts me about what is to happen is that I will get to see Henry again, and we'll play games again." They often played Hi Ho Cherry-O while he was sick. He usually won too.

I told her, "I really don't believe what you do, but that's ok. Nothing would make me happier than if that were to happen."

Up until now, insinuations that Henry was frolicking through a field catching butterflies with other dead people angered me. However well intentioned, it seemed such a silly, ridiculous thing to suppose. That it was supposed to make it easier that he was no longer alive was the bitter pill to swallow.

But something about what she said softened my heart. And while I don't believe that it will happen, there's a small piece of me that smiles if I imagine that it could.

18 months

2010-08-31T18:42:00.002-05:00

He's been gone 18 months.

I feel very differently than I did at a year. I'm thankful for that.

Most days it's okay. Okay like the holocaust is okay, or 9/11 is okay. Of course it's not okay, but we all still get up, go to work, take care of our kids, watch tv in the evenings. Life goes on. Not his, but every one else's goes on. I don't cry most days. I don't feel overwhelmingly sad most days.

But every time I climb my stairs to go to my bedroom I walk past his door. I see the black and white sketch that a friend did of him holding a zucchini, hanging on the wall. I see the firetruck bed that my husband built, with him. I see his ashes sitting on his bookshelf. And if I stop to think about it, it makes me sad. Really sad.

So most days I don't.

There's not a hallmark ending to losing your child, the moment at the end of the movie when the music swells and everyone comes together for a warm group hug with a couple of happy tears. Sometimes I think there's a piece of me waiting for that.

It's a slow fade of pain, loss, sadness, that grows more distant, but doesn't go away. And the more distant it is, the more distant he is.

18 months is a huge amount of time for kids. The girls are different people than they were when he was diagnosed, when he was sick, and when he died. One of my consolations in his death is their relief. They do not seem to suffer the way that my husband and I do. But as much as he fades for me, it is tenfold for them. It's the way of a child's memory. Their brother is being lost to them.

My grandmother is 95. Our phone conversations are almost all about dead people, people so important to her, some that I never knew, (hoping here that I'm not the only callous granddaughter), many that I don't really care about. I listen, because she needs me to. When do I become her? When will no one remember him but me? When will no one want to talk about him but me? What can you say about a 3 year old, 2 years, 20 years, 50 years later?

I started this saying it was okay. It has to be okay. I am losing him again, and I can't stop it, just like I couldn't the first time. It has to be okay.

Vacation

2010-08-05T20:01:00.003-05:00

Last week we went on vacation. It was greatly needed, and a really nice time. There is a huge difference between the vacations you take when you have toddlers and what you can do with older kids. We were able to be really active, and outdoors.

After Henry died, I found the most relief in doing new, different things. Things he had never done, would never do; I didn't see him there. Familiar things had such a sting, his absence was so palpable. There was a bit of escapism in the novel adventure.

Now, his absence is part of the routine, the usual. All of the paths of everyday life have been trodden without him enough times that I no longer expect him there.

I was surprised to find how much I missed him on vacation. There were so many things that we did that he would have enjoyed. I thought of him so frequently, and it made me sad. The ubiquitous 6 year old boy with blue eyes that hangs out in family vacation spots made it easier to imagine him there with us, fighting over who got to sit by the window. I remember writing about missing a dead child, wondering if I would miss him at age 4 for the rest of my life, or if I would miss the person I imagined that he would have become. This trip it was definitely 6 year old Henry that I kept seeing.

I only cried once on vacation, and the girls didn't notice, for which I was glad. I don't try to hide all of my emotions from them, but they had such a good time and I didn't want to dampen their spirits.

DMB 2010

2010-07-24T11:03:00.003-05:00

Saw Dave Matthews last night at National's Stadium in DC. In the heat. As Dave said, "It feels like I'm standing on a dog's tongue." I concur.

I wasn't nearly young enough nor drunk enough to press up close to the stage with the crowd, but after we found a place to hang back where there was a bit of breathing room, we really had a good time. What I love about Dave is that the emotion in his music is real, and resonates with me. A lot of his older music is about falling in love, the rush of emotions and impossible dreams you have in those younger years. Now, his love songs mirror where my life and my relationship is, after several years of marriage and kids. Or maybe that's just what I hear.

It seems that every year I have a moment. Last night's was during "Two Step", an oldie but goody. I'm not sure I've ever heard it live before.

Celebrate we will
Because life is short but
Sweet for certain
We're climbing two by two
To be sure these days continue
The things we cannot change

Two days ago was Henry's 6th birthday. Yesterday I posted my father's obituary to my facebook page. But last night it was ok to celebrate, it was ok to feel good, feel happy, enjoy my family, laugh, dance, scream...

Some days I can't do it, but last night I could. So I did.

Things we cannot change....

LOL

2010-07-11T06:50:00.006-05:00

I love the names of the LOL's in my practice. (LOL was Little Old Lady in the medical field, long before we were all rolling on the floor text-messaging.) Ernestine, Thelma, Genevieve, Lula, Ruby, Nellie....each is more awful and somehow more lovely than the next. You don't get to be a nonagenarian if you are a sourpuss. I don't know why, but almost as a rule they are gentle, relaxed people. Chicken or egg? Does being 90 make you relax, or do the %#&holes kick it early? Sounds like some NIH research funding is needed....

Anyway, I saw one of my LOL's this week. She's 93. The cardiologist's notes said that he thinks she's depressed. I asked her about it. "I'm just disgusted with myself." And she cried. Her siblings are all dead. Her kids are aging, she's watching them start their own death march. Though she lives independently still, she requires help with shopping, home care, etc, and resents that. She doesn't feel that she contributes anymore. "I'm just a burden..."

What can you say? There's plenty of platitudes, of course, but really, when life sucks eggs, what can you say? Which of us wouldn't feel the same way that she feels? In residency we learned the BATHE technique, which in retrospect is really a way to teach physicians with poor listening skills how to make a patient feel listened to. It's the anti-therapy, carefully avoiding any deep thoughts, advice, psychological assignments. We never learned therapy.

I had a co-worker suggest therapy to me this week. I was crying. Let me sum up my last 3 weeks: Henry's 6th birthday approaches. My boss dropped dead of a heart attack. My disabled parent is currently doped up on haldol in a hospital 2500 miles away without insurance coverage. I had a personal loss of my own. It has SUCKED. And so I was crying, not uncontrollably so, but crying. She suggested therapy. Therapy. WTF is a therapist going to say about my crying over the last 3 weeks?

So looking at this sweet 93 year old, who indeed is a burden, who indeed is the last of her generation, whose options are to either die or get worse, I could not try to talk her out of her sadness. I'm not even sure that I remember what I said to her. It was somewhere along the lines of "it really sucks and I'm sorry", translated for someone born in 1917.

Maybe in 80 years, when all the Brittany's and Madison's are old someone will find their names awful and lovely too. But life will still be sad sometimes, and that's not pathological. That's life...

Book Review: Earth Abides

2010-07-04T06:08:00.003-05:00

I was tipped off to this book by a reader's home page. I had never heard of it before.

I bought it, and it sat on the side table, till Mr. Smak picked it up. Mr. Smak and I have very different reading preferences. I'm trying to remember a book that we both enjoyed....probably the last one was the Harry Potter series. He enjoys nonfiction, histories and science, which for me is the equivalent of eating a pound of saltines on the thirstiest day of my life. And he certainly doesn't enjoy my genre, which I guess I'd describe as fiction focused on character development.

He didn't put it down. I therefore, expected not to care for it much. Which was not the case.

Earth Abides, by George R. Stewart, is one of those books that if you asked 10 people what it was about, you'd get 10 different answers. It's a post-apocalyptic novel about a man in America after almost everyone is wiped out by disease. But that's not what it's about.

For Mr. Smak it was a survival novel, and prompted him to purchase a few fun and geeky items so that he's more prepared when the world ends.

For me, it was about humanity's need to understand it's world. The protagonist, Ish, was a man of rationality, education, science. I identified with him, with his world view. But his eventual society did not, and they needed a construct with which to deal with the world.

This message is very much where my thought process around religion is landing of late. We all need to believe in something, to have some structure or order to base our brains on. For me it is the scientific method, rationality. For others it's the teachings of christianity. For others, it's believing in tarot cards. And though I think that mine is "correct" (whatever that means), it's becoming more and more clear to me that it just doesn't matter. It's the having the belief system that is important. (Incidentally, I think this is why it seems so easy for people to alter their unalterable belief system when something happens that they don't understand. It's much easier than undoing the belief system.)

At any rate, it was a great book. Thanks, Tom.

Envy

2010-07-04T05:33:00.002-05:00

There are so many surreal things about having a child with cancer. One of them is that suddenly, after not knowing anyone who had a child with a life-threatening disease, those families are everywhere. The entire oncology inpatient floor, in your same stinking boat. The outpatient housing. The clinic population. It's very easy to look around and think, "Well, I know my kid has an aggressive cancer with only a 25% chance of survival, but at least we're not THAT family."

Horror, fear, sadness, central lines, infections, bald heads become the norm. Most families discuss schools, teachers, sports, while your family chats about chemo, fevers, and MRIs at the clinic. You're not the only one.

As "real life" has enveloped us again, a welcome thing to be enveloped by, we are the only ones. While I am careful to avoid the "Why me?" line of questioning, knowing that it has no acceptable answer, I am having more and more trouble not feeling really singled out. This time of year is healthy well child check after healthy well child check. Kids at the pool. The neighborhood kids out in the yard. I look at all those kids, at all those parents, and I can't help but let a little bit of "why not them?" creep in.

I have particular trouble with a family we know whose youngest had cancer. He was being treated roughly at the same time as Henry, with a much more curable leukemia. He's a year older than Henry would have been, and doing great. He was at soccer tryouts this year, running, giggling, pestering his mother for candy. It's really hard for me to act normally around him. I certainly don't wish anything but the best for him, for his family, and I'm glad he's doing so well. But envy seeps into me as I look at him...why isn't Henry also running around, giggling, rolling in the grass?

This isn't the envy for your best friend's cute new shoes. It sours my emotions. It eats at me.

Yesterday I went walking, and listened to a podcast of Terri Gross' Fresh Air. I happened upon the story without knowing what it was about. She was interviewing Dan Gottlieb, a paraplegic psychologist, about his life, and his books (though she pretty much ignored the books and focused on him). I really enjoyed the interview. Mr. Gottlieb has looked death in the eye, looked grief and loss in the eye, and come out OK on the other side. Better than OK, he's good with it. He spoke for a while on the subject of envy, and says he envies no one. He suffers greatly and often, but envies no one.

I'm apparently not there yet.

Pity Party

2010-06-25T20:14:00.002-05:00

"My life seems pretty complicated. Sometimes I just want to throw a pity party."

I agreed with her. We discussed medication changes, hoping that will improve her coping skills. But honestly, sometimes there's just too much to handle and still feel good about life.

I replied, "The tough part is that it's always easy to find people who seem to have it so much better than you. But if you really look around, there are always people who have it much worse. And the pity party really doesn't help."

This has been my past few weeks. I always joked that when you've lost a child, you should get a GET OUT OF TRAGEDY FREE card, that lasts at least a few years. But of course it doesn't work that way.

There are a couple of big, painful, stressful things going on in my life. Great big sucky things. No, not nearly as sucky as Henry's illness and death. But pretty big and sucky. And I could use a break from big and sucky. I even feel like I deserve one, and I know that I don't deserve anything. But I also know that I don't deserve this.

Yet, there is nothing to be done. Such is life. And the pity parties don't help, in fact, they make me feel like an ass. Who am I to expect a stress-free existence?

Still...Big. Sucky. Not sure what else to say.

Lemonade

2010-06-18T15:44:00.002-05:00

One lesson that I have learned since Henry got sick is that people deal with such profound loss and grief in very different ways. Liz and Jay Scott, parents of Alexandra Scott who died of neuroblastoma 10 years ago, channeled some of their emotion into the development of the foundation started by Alex before her death, "Alex's Lemonade Stand". Their mission is largely about funding pediatric cancer research, though recently their literature show that they are also expanding into family support. We have funneled most of our charity event money toward their foundation.

I am always amazed by Liz' calmness and grace on her many fundraising and awareness-raising appearances. I truly don't know how she does it.

Today I received an email from the foundation, as she reflected on ten years without Alex. I'll reprint her list of 10 lessons; I found each of them to be profoundly true to my experience as well.

Of course, I also miss Alex every day. Last week, I spent some time reflecting on the fact that it has been a decade since Alex's first stand. As I thought about the past decade, with all its happiness and sadness, I realized that this milestone in the history of the foundation coincides with what should have been a milestone in Alex's life. Today, Alex would have finished her last week of middle school, and celebrated her passage into high school with her classmates and friends.

That really gave me a lot to think about...What would Alex be like as a 14-year-old? Who would her friends be? How would she get along with her brothers? Would she get along with me or think I was annoying? So many questions, so many things I will never know. As I thought about these things I will never come to know, I realized all of the things I am privileged to know. Life lessons that I have learned because of Alex, her life, her legacy, and the wonderful supporters who continue it.

So, in that spirit, I created a List of 10 Lessons learned over the past decade:

1) Our children are much stronger than we are in every way.

2) Truly living for the day is something everyone should experience in their lifetime.

3) Good friends are found in tough times.

4) Life is unfair sometimes~ accept it and make something good out of it.

5) Putting on a happy face can actually make you feel happy (try it, it works!).

6) There are many more good people in the world than bad people.

7) Time does not heal all wounds.

8) Inspiration comes in all shapes and sizes.

9) One person can truly make a difference in the world.

10) Many people working together can accomplish amazing things.. including curing childhood cancer.

Thank you Alex, and thank you Alex's Lemonade Stand Supporters. You have a lot to be proud of.

Gratefully,
Liz Scott
Alex's Mom

Thank you, Liz, for all that you do.

Book Review: The Knitting Circle

2010-05-28T15:18:00.003-05:00

This is my first official novel that I've listened to, not read.

My car is old enough (as most are) not to have an ipod jack. It took me several months of whining to myself about not being able to listen to my iPhone in the car to realize that upgrading my radio would be a lot cheaper than replacing my car. I'm clever like that. So hubby got the radio replaced for my birthday, and for Mother's Day bought me The Knitting Circle for my iPhone.

As mentioned in a previous post, Ann Hood's The Knitting Circle is the semi-autobiographical account of a woman named Mary whose daughter died suddenly at age 5. The novel picks up about 6 months after Stella's death, and tracks Mary's grief journey for a couple of years.

I didn't love it. The writing style was bland, the conversations contrived, and the storyline relatively predictable.

But, the content really spoke to me. Hood nails many of the experiences of a bereaved parent, from the awkward conversations with friends who now don't know what to say to you, to the pain of various anniversaries and memories, to the self-absorption that I think all bereaved parents experience and can't escape. She also described a clinical depression well.

And, she very capably explained the sedative properties of knitting, the way that the movement of the needles and the feel of the yarn somehow distracts the brain enough from the ongoing pain that there is a taste of relief.

I'm not sure if the act of listening to the book rather than reading it altered my experience of it or not. I sure did enjoy my commute more.

To me, a glaring omission was the lack of exploration of the existential angst that it seems that most bereaved parents go through. The is-there-a-god-why-did-you-god-screw-you-god-i-need-you-god-what's-the-effing-point that I have heard from most bereaved parents was very very absent. From an author's standpoint, I would think this would be worth exploring. I'm not sure why she left it alone.

It wasn't as depressing as I thought it would be. I did cry, in two places, but by and large I was not overwhelmed by the sadness of the story. It's interesting, years ago I swore off of Oprah's book club after reading Map of the World and another sad story, wondering why in the hell people would spend their free time reading tragic, depressing novels. Now I guess I know.

Henry's Hustle

2010-05-23T17:51:00.003-05:00

I had a rough day yesterday. The worst in a long time.

Last year, to honor Henry, our elementary school put on an all day carnival, with the aim of fundraising for pediatric cancer research. They raised $18,000 for Alex's Lemonade Stand, truly amazing and remarkable. The teacher who dreamed up and spearheaded the effort received an award of recognition from the county, which he deserved.

It was a very difficult day for me. It had only been a few months since Henry had died. I hadn't gotten past feeling like one of my kids was missing whenever we went somewhere. I choked back tears much of the day, and found myself exhausted by it. Immeasurably grateful, but exhausted.

After the event, we were dumbfounded to find that they intended to make it an annual event. Heartwarming barely begins to describe it. We were truly honored.

The second Henry's Hustle was yesterday. I mentioned a few posts ago how even as I am amazed and humbled by the dedication and generosity that go into this, I dread these events. All the emotion is back, the loss is again fresh, and the publicness (is that a word?) of our loss is very very uncomfortable. I've felt the tension build a bit this week, and expected an exhausting day again.

We ran over to the school to drop off some items. I was immediately overwhelmed with emotion. The sheer volume of people who had worked on this event, given their time, effort, and money was remarkable. When that flow of emotion started, I couldn't stop it. I had to run home with my middling to pick up a few more items, and started crying in the car on the way home. She saw me, in the rear view mirror, and her excited and happy face fell to see me crying. Her disappointment aided the snow balling. By the time we got back to the school, I told her I would join her in a moment. Once she was gone, though, there was nothing holding me back. I sobbed in the car for a half hour before I told my husband I couldn't come.

I went home and cried, uncontrollably, for ninety minutes. The tragedy of Henry's death. The love and warmth of that community. The loss after loss after loss that my family has suffered over the last two and a half years. My guilt over not even showing up to this event that all these people who didn't know me had created. Most of the time I didn't know what I was crying about, it was all jumbled up.

Finally, I was able to compose myself. I made it back to the school, and out of the car. The girls were having a blast, there were kids EVERYWHERE wearing Henry's Hustle Tshirts. There were friends there to support us. It was amazing. And overwhelming. After sobbing on the vice principal's shoulder, I pulled it together for twenty minutes, and then I was done.

I ended up back at home, alone, crying, drinking wine at 11 am and eating chocolate to calm my nerves. What a high point for me.

A dear friend and my extended family came and took care of me, and I spent the rest of the day completely spent but unable to sleep.

I'm not sure what to think about it. It's bizarre to me to think about, but that's the most out of control I've been since this whole thing started. When Henry got sick, I couldn't lose it. He needed me, Mr. Smak needed me, the girls needed me. All through the treatment, the horror, the relapse, his death, the grief, I've never lost it.

Maybe I needed to. Maybe it was time. Maybe I wasn't strong enough to lose it before, maybe I was too afraid I wouldn't make it back.

I wouldn't mind if another day like yesterday never happened again. But somehow I felt like it needed to.

And today, I woke up feeling great. We took the girls hiking today, and I was able to take in the beauty of what was around us without feeling sad, without that often-present afterthought about Henry not being here. It was nice.

Weiird

2010-05-12T17:47:00.005-05:00

A couple years ago I wrote a post about playing the Wii with Henry, even as his avatar bore the signs of his chemotherapy.

He never elected to change it to one with hair, though he did add a hat and sunglasses at one point.

There are certain games where the Wii populates "extras" with various saved avatars. It's oddly comforting to see Henry unexpectedly driving in the car next to you. I like it.

The Red Thread

2010-05-07T05:10:00.002-05:00

I've said before that I'm comforted by the sheer enormity of the universe, and my unimaginably insignificant role in it. I don't see those chance happenings that others do as ways that the universe tried to make my day, or tell me something; for me, the randomness of life is so comforting.

Alas, even a cynic can wonder about fate from time to time.

I had an hour in the car yesterday while at work, by myself, out in one of the many stretches of rural America that lacks an FM signal. I scrolled through my NPR reader and landed on the Diane Rehm show, and randomly chose an hour segment titled "Ann Hood, The Red Thread".

Having never heard of either Ann Hood or her red thread, imagine my surprise to hear that she is an author who writes from the perspective of a bereaved parent. She lost her 5 year old daughter Grace to an invasive streptococcal infection abruptly, and used knitting as her therapy to help her navigate her grief.

Weird, huh?

The interview was excellent, you can find it here. She wrote a semi-autobiographical novel 5 years after her daughter died called The Knitting Circle. I hope to read it, though part of me thinks I'm not quite ready yet.

The novel for which she was being interviewed today, The Red Thread, refers to the ancient Chinese belief which states that when a child is born invisible red threads connect that child's soul to all those people - present and in the future - who will play a part in that child's life. As each birthday passes, those threads shorten and tighten, bringing closer those people who are fated to be together. After Grace died, Hood and her husband decided to adopt a baby girl from China. The book is a fictional account of five families who go to adopt, as well as the account of the chinese mothers who made that horrible decision to give their infants away. The concept of the red thread obviously runs deep in the adoption community. It's a lovely thought.

Don't worry, readers, I'm not going soft. I'm still the cold-hearted scientific non-theist that I've always been. But, that was weird, and the interview very touching.

As an aside, I'm having an unusually light for weeks. Henry is, though it pains me to write this, far from my mind. At times I feel like his story happened to another family. The intrusive thoughts that were disrupting me constantly a few weeks ago are gone. And, as all grieving parents do, I'm starting to feel guilty about all of this. I can enjoy a few of the good days in a row, and then I start to wonder what's wrong with me. I keep thinking I should have learned by now that it will be back. I'm trying to continue to enjoy the days I have.

Book Review: 36 Arguments for the Existence of God, by Rebecca Goldstein

2010-04-28T06:40:00.003-05:00

I finished this a few weeks ago, and have been trying to think of how to review it since. A good book can make you learn something about yourself. This one did that for me. I had the strange realization that while most of my childhood friends wanted to grow up to be famous celebrities or rock stars, I wanted to be Brilliant, with a capital B. The characters in this book are Brilliant, and so for me it read a little bit like a summer beach paperback about a rich debutante. Turns out I'm far from Brilliant, just bright (lowercase) with an aptitude for standardized tests. The story is about a university professor, who is being courted by the public and Harvard University due to his status as a newly christened intellectual celebrity, and a series of explorations about his personal relationships. It's a bit of a fictional peek inside the world of the intellectual elite. Along the way it explores a lot about the meaning of religion, which is of course very different from the meaning or existence of god.

This, as a sidebar, is my beef with the "atheist movement". The Dawkins crowd misses the importance of that difference.

Anyway, the author is clearly intelligent. It's the first book that I've ever read where I needed to consult a dictionary repeatedly. There are lots of big, intellectual words. Theodicy. Tautology. Disquisitions. There is a lot of philosophic arguments, that for the philosophy-naive is a fun re-exploration, almost made me feel like I was taking a college class on the philosophy of religion. There's higher math, game theory, religious history.

If you want a little of a mental workout, and a secular humanist viewpoint doesn't offend you, consider checking it out.

ShrinkRap just referenced a book that I'm going to order next.

Again

2010-04-19T18:37:00.002-05:00

She was in, with a beautiful new infant, for his first checkup. Vigorous, rooting, crying, reaching, full of life and zest.

She had lost an infant, not long ago.

As I wrapped up his visit, I asked how she was managing the difficult emotions she must be having. Doctor to patient.

What I really wanted to do was to ask, mother to mother: How did it feel to give birth to a child knowing that last one that made that violent trip from your womb to the world is no longer with you? Did you sob with joy, or grief? When you hold him, does it pain you to see the blood filling his fingers? When he suckles your breast, do you see her face? Or does this amazing gift of life, again, ease your loss?

She was managing, she said. And smiled. She looked like she meant it. She looked happy.

Lithotripsy

2010-04-18T10:31:00.002-05:00

Grief has been my kidney stone recently.

Most injuries, most illnesses that result in pain, make people motionless. If I don't move my broken arm, it won't hurt. Not kidney stones. That sharp edged stone just doesn't settle into a comfortable spot in the ureter with it's smooth walls. So most people with kidney stones are constantly shifting, trying without success to find that one position where it doesn't hurt.

This has been my recent MO. Henry's absence has been a constant presence for me. My middling and I scrubbed fingerprints off of doors this morning, and all I could think was that none of them were Henry's anymore. We went to a high school production last night, and ordered 4 tickets. Not 5. I spent it wondering if he would have liked it (decided he wouldn't have). My middling is lying on the floor building with Legos as I type. Alone. Without her brother.

And the discomfort that is leading to has me constantly looking, without success, for that position of relief. When I'm at work, I'm wishing I wasn't, wanting to be home where I can be alone with my pain, take off the happy face. Home hasn't been much of a relief either. My impulse is to push the girls away, though I feel terrible about it. Being along doesn't help much either, I spend it wishing my family was with me again.

I do feel the need for a support group, that I have yet to find. Our family grief group is useful, and I am grateful for it, but it's brief, far away, and we have trouble getting there now that soccer season is in full swing. I have not found an online group that I feel I can participate with. Most parents seem to turn to religion and the afterlife to comfort themselves, and I can't find any solace there. To boot, I have a realistic fear that I'm just barely hanging in there right now, and I am afraid of someone else's naked grief pulling me under.

I have also recognized that I have significant anxiety about three upcoming events. They are all very public fundraising events where people we love and who loved Henry give their time and money to support. I've admitted to myself that I'm dreading each one. Social events suck me dry of all energy on a good day; to stand and welcome friends, and strangers, and thank them genuinely, as they deserve, is exhausting. I feel like I have a scarlet letter on my chest, whatever letter you'd wear as a bereaved parent. It's awkward, and uncomfortable, and I wish they were over. These events are important, and I'm so appreciative of the work that goes into them, and the fundraising that results, but I just want them to be done.

So, this post was my attempt at lithotripsy, to break that damn stone up a little bit so I can pass it soon. I continue to find this blog a huge source of support; I remain grateful to all of you.

Sad, and Mad

2010-04-13T22:20:00.003-05:00

I'm so sad. A girl we met, on our first chemo admission, is at the end of the line. Her tumor won't quit. The writing is on the wall.

This has been a long and painful journey for her family.

And I'm so very mad. Her blog is full of messages to her mother. Her poor mother, who has just been told that her daughter is going to die of this tumor, is getting message after message from people telling her to "keep believing." Keep praying. Keep trying. Don't give up.

I could scream.

As if this woman doesn't have enough on her plate. As if she hasn't hoped, prayed, and believed enough in the last 3 years, through 3 resections, chemo, radiation, chemo again....

Over and over and over again, people say this garbage, all the time. "Prayer really works". "Faith saved my mother's life", not the stent placed to open up her blocked coronary artery. "Jesus can heal any cancer." Without ever thinking, wondering, if the person that is sitting through such nonsense ever lost a parent, a spouse, a child. Ever loved someone, prayed they would make it through that surgery, that MI, that car accident.

The insensitivity amazes me. Spend some time on the pediatric oncology ward, and then run around spouting that crap.

Keep your goddamn magical thinking to yourself. This woman's child is dying. She's about to make the hardest decisions of her life, and she's going to lose the prize no matter what. She needs support.

Spring

2010-04-04T19:15:00.003-05:00

Like so many of you, spring is my favorite season.

I love to garden. I love to go my local nurseries, see what new colors they have in pansies this year. I love the sun (and no, I'm not good about sunblock, though I counsel my patients to be.) I love the warmth, and would prefer to have the house open and a fresh breeze than the AC on. Who doesn't love spring?

Last year I didn't love spring. It was still warm, breezy, beautiful, but I didn't enjoy it. At all. I wasn't surprised, things were still too fresh, obviously. The things that I normally take great pleasure in, particularly gardening, were a chore to me. I did them poorly and half-heartedly. I was still emotionally hemorrhaging, going through the motions of life because I didn't know what else to do to distract myself.

In retrospect, I've had a rough few weeks. It's odd to me that I have such difficulty recognizing my grief cycles, until I'm looking back on them. And it's so strange to feel COMPLETELY out of control of them. I truly do not feel like I can "pull out" of a down cycle thru my own volition. Grief happens to me. I think that's where my last post was born; my sense of lack of control is frustrating to me.

But last week, one day I woke up and it was gone. It was there when I went to bed, and simply gone in the morning. I was energetic, positive thinking, engaged, all before I hit the shower. And it's a short walk from the bed to the shower. Since then, I've felt great. I've had some difficult moments, cried some, missed Henry a lot, but it was all from such a different perspective than where I was just a week ago. Last week I was considering putting away some pictures of him since they pained me when his eyes caught me off guard. This week the same pictures are making me smile.

Another grief lesson learned, I guess. But I'm glad that I'm enjoying spring.

As Good as it Gets

2010-03-28T11:19:00.003-05:00

I remarked to a friend this week that maybe this is as good as it gets. I miss him, long for him, need him, daily. But he's not here, and will never be again. And in between the missing, longing, needing, life goes on. Good things. Happy things. Fun things. Many many not so fun things as well. Life goes on, without Henry in it.

The only way to not miss, long for, and need him is to push him away. I wrote not too long ago that I am having some positive memories of him, some fond recollections. This fortunately continues, but unfortunately is far outweighed by the sadness. I still have regular and painful flashes of the pain and suffering inflicted on him by his treatment. His death, the days leading up to it are still seared in my mind. I am not willing to push his memory away far enough so that it is no longer painful. Maybe I'm not able even if I were willing.

Maybe this is as good as it gets. It is what it is. He's gone. I can't change that. I can't change what I did, or said, or thought.

So I feel like I should be working on acceptance, but I'm such a cynic I think it's bullshit. It is what it is, whether or not I accept it. I've always had such contempt for middle class ennui; now I watch myself beginning to sip that koolaid. She didn't marry the right guy. He didn't make it in his career. She got lupus. They can't afford the house/vacations/schools they wanted. My kid died. So here we are, living in a free society, with more money and health than 99.9% of all homo sapiens who have walked the face of the earth, and we're not happy.

I don't know where to go with this. I feel I've hit a bit of a wall, psychologically. Sometimes I want to take this bull by the horns, and do something that gives me control over it....write a book, meditate for a month, run a marathon. But I think my lesson is that there is no way to control it.

Beauty

2010-03-16T16:17:00.005-05:00

I went out for a run today on this gorgeous spring day with my 11 year old.

She is beautiful, she really is. In a Sandra Bullock, girl next door, athletic pony tail and no makeup kind of way. It's a good thing she doesn't know how beautiful she is yet.

Anyway, I was trailing her, badly. Sucking air. She's prancing along effortlessly, long legs and the start of shapely hips 100 yards in front of me. It's so strange, and lovely, to see her this way.

We passed a couple with an infant in a stroller.

I choked back tears. (No, not unusual for me, I know.) But to think that just 10 years ago she was the one in the stroller. It was such a profound juxtaposition. Where has the time gone?

There is beauty all around me, in my life.

Concensus

2010-03-07T07:06:00.002-05:00

The concensus is that the second year of grieving is worse than the first.

Grief stories and experiences are so different. Yet almost everyone I've talked to with personal experience in this area agrees on this point.

I think that I can see that. Part of me feels like I'm just really beginning to grieve in the last few months.

The first six months were truly horrible. It's painful even to recall the horror of each day, each thought, each memory. I don't mean to use dramatic words, but "horror" isn't an overstatement. Then I had a few months of improvement, mostly just in comparison to the prior six months. But after a few months of quiet, things have gotten harder again.

It's as if the first stage was the survival of a life-threatening injury, and now it's time for the long journey of recovery and rehab.

Today is a good day for me. Spring is in the air, the sun is shining, and I have a sense of optimism. I feel up to the task of the next year, and further, even while anticipating the difficulty.

On bad days, though, I'm not so sure. I feel vulnerable, like a strong blow will drop me. The anniversary had me feeling bruised and beaten for days.

As always, there is nothing to do but wait and see.

Scar Tissue

2010-02-28T06:50:00.002-05:00

Last week marked a year that he's been gone.

I didn't know what to expect of the day. We made plans so as to keep busy, keep moving, which helped. But eventually we quit moving, and I was overwhelmed. It was easily the worst day I've had in 6 months. Many significant days have come and gone since Henry died; most of them have not been as bad as the anticipation of how bad they were going to be. I don't know if I let my guard down thinking this would be the same...but it wasn't.

What I realized is that I have not healed at all. There is no scar tissue coating, covering my wounds. It is still a horrible gaping hole.

The shock of his death is gone. The imbalance of a family with a missing member has with time assumed a new balance. I thought that time had healed my wounds.

What I have learned to do is to put him away. The wooden box in his bedroom that holds his ashes is a fitting metaphor for where he exists in my psyche. This is what I have to do to continue living my life.

Last Thursday I opened that box. Got it out of the closet, unwrapped the blankets, opened it and looked inside. Nothing had changed.

Henry was gone. My arms ached to hold him. My eyes ached to see him, my ears to hear him. All of the things he would not do bounced around the box. My family's grief, my daughters' losses, my pain and despair poured out of the box.

Nothing had changed. Nothing will. Next time I look in the box he will still be gone.

Oh

2010-02-11T09:14:00.002-05:00

Dave Matthews has released a new live acoustic album. While listening to it yesterday, this song made me smile and remember Henry.

Oh

I hear you still talk to me
As if you're sitting in that dusty chair
Makes the hours easier to bear
I know despite the years alone
I'll always listen to you sing your sweet song
And if it's all the same to you

I love you oh so well
Like a kid loves candy and fresh snow
I love you oh so well
Enough to fill up heaven, overflow, and fill hell
Love you oh so well

And it's cold and darkness falls
It's as if you're in the next room so alive
I could swear I hear you singing to me

I love you oh so well
Like a kid loves candy and fresh snow
I love you oh so well
Enough to fill up heaven, overflow, and fill hell

Peeking through

2010-02-09T18:13:00.004-05:00

Of late, I find that I am able to have positive memories of Henry. This is a change.

Up till now, virtually all of my memories of him were laced with Cancer. When he was younger, did he have it then? Remembering the time around his diagnosis. Remembering the chemo, the treatments, the vomiting, holding him down to give his meds. Terrified of relapse. And then, the agony of simultaneously treasuring every minute while watching his death bear down on him like a freight train. Unable to fight, unable to run, even unable to scream because it would scare him and make things worse.

Cancer infiltrated his body, his life, our family, my being his mom.

I have hoped for good memories of him. It's been hard. There was so much pain. But a few are beginning to peek through.

I can remember how soft his cheeks were to kiss, without remembering that he was bald from chemo when I kissed them then.

I can remember his voice as he made one of his quirky comments without seeing the steroids all over his body.

I can remember his pleasure with a toy without focusing on the fact that he played with it because he was so limited otherwise.

My memories remain laced with grief. They make me miss him more. But I'm really glad that the cancer is finally letting go of him, if only in my head.

Take it easy on me

2010-02-02T18:00:00.002-05:00

If I lost a leg in a car accident, I don't think I'd spend most of my time being really thankful that I still had three limbs.

Why do I expect to be able to get past my loss so quickly, just because I have so many other blessings in life?

Red Car Syndrome

2010-01-28T18:30:00.003-05:00

So you go to buy a new car. A red car. And as you're driving home, you notice all of the red cars around you. Surely there weren't that many before. Are you a trendsetter? Did they all know you were going to get one?

This is how I feel about suffering right now. There is SO MUCH suffering now, all around me. It numbs me. A local infant, shaken to death. One of my daughter's classmates just lost her dad to a hit and run. A close friend is watching her marriage of 20 years disintegrate. Metastatic cancer at 61. A local boy, having won against cancer once, now gets leukemia. And Haiti, devastated Haiti....I can't even listen to the news about it, let alone watch it. I made my Red Cross donation and turned it off. I can't process it.

Has this always been here? Why am I just seeing it now? Is this because of my suffering, or am I just the age that all this crap starts?

Ch-ch-ch-ch-changes

2010-01-17T17:50:00.002-05:00

Since knitting has now consumed virtually all of my reading time, I made some changes in my sidebar. No longer the nightstand, now it's what's just off my needles.

Of course, if you're on Ravelry (the best website ever designed), there are many more photos.

These socks are gorgeous, much richer pumpkin-y color in person. Fortunately, there's a fellow blogger who is a virtuoso at dying beautiful sock yarn. Check out her etsy shop here.

We'll see if I'm any better at changing up the knitting than I was at the books.

Bad news

2010-01-12T16:17:00.004-05:00

It's not often I'm the one delivering the news that a patient of mine has cancer. It may be the surgeon, the specialist, the mammogram, or the ER doc that gives the bad news. I don't avoid it; it just works out that way.

I had to today. Just the fact that he had an appointment for an acute concern was a red flag with this guy, who is nice enough, but doesn't relish coming to the doctor. My visual impression of him reinforced my concern, his complaints even more so, and his physical exam sealed the deal.

My heart sank.

I always appreciated bluntness when we got news about Henry. No mincing of words, no dancing around.

I hope he did too.

Better

2010-01-03T17:48:00.003-05:00

A few months ago I mentioned another bereaved parent, who said "It doesn't get better, it's just different" as time goes by. I had another episode if wondering whether I was normal, as things were really getting better for me. But I think I've reached where she was.

For a time the grief controlled my life. It was unpredictable, overpowering, and uncontrollable. It had a power akin to cancer; I didn't know how I would feel each day, what I could or could not accomplish, whether it would be a good one or a bad one. The emotional pain was so intense it was almost physical.

Grief has gradually morphed into a much more tame beast. I can often tell when it will act up, and I can generally put it off until a convenient time if need be. I don't like living with it, but we have reached a mutual understanding. This is the part that for me is better, so much better. For a while I feared how long I could go on the way things were. It almost reminded me of labor, when you think there is no possible way that you can go on enduring more pain, and then you do.

I no longer fear that. I will live with this pseudo-domesticated companion forever. We get along ok. Honestly, I miss it when it is gone too long, again wondering if I am normal, or love my children enough. I often welcome it's sting when it returns after a break, like a religious penance.

But I find that the beast that is grief was a distraction from reality, the reality that he is gone. And now, when I am quiet, not grieving, not occupied, his absence is all around me.

That is what will never change, will never be better...just different.

Loss

2009-12-30T16:29:00.002-05:00

She lost her mom two weeks ago. It was an expected death, after a full life.

Still, not easy for her.

She cries all the time. She can't get anything done. She sits and stares at the wall. She wakes thinking about her. She hears her voice.

All normal responses to grief. I used to know it, having read it in books, and heard it in lectures. Now I KNOW it. I grok it. I have done it, all of it.

We talked, she cried, somehow I didn't. She wanted a pill that would help. But we both knew there isn't any.

So we settled for talking, and both felt a little better, if just for a little while.

Food for Thought

2009-12-22T19:31:00.003-05:00

A brilliant bit of reporting on NPR regarding how money drives way too much in medicine. Really a delightful piece, exposing how Big Pharma makes everyone think they have a disease that needs a drug. TBTAM did a similar expose a year ago on Pfizer, this one is on Merck, but be sure they would all have done it if they had thought of it first.

It should give pause to physicians and patients alike.

And make us wonder why last week the FDA approved Crestor, a powerful cholesterol-lowering drug, for people who do NOT have an elevated cholesterol.

Holidays

2009-12-15T18:35:00.002-05:00

So far, so good.

I always tell my patients who have suffered a loss to expect a difficult holiday season. So many memories to deal with, expectations to temper, gatherings to weather....

I have figured all year that this 6 week stretch would be intense and painful. So far, so good. Perhaps my low expectations have made it easier to deal with. Perhaps I haven't hit the tough part yet.

I elected for a no-nonsense approach to decorating this year. We lugged all the crap out, decorated with our favorite stuff for a couple hours, and immediately put it all away. Might be good to do it this way all the time. It was like a dental cleaning; I dreaded it, but felt better when it was done.

We bought and decorated a tree for Henry this year. I find it surprisingly comforting. It's got "his" ornaments on it: Lightening McQueen and Sally, some he made, some with photos of him, some he was given. Toward the end of his illness, he became very fond of painting various cheap wooden models we got from the craft store. We put hooks in them and put them on the tree too. Who knew that tanks and fighter jets in rainbow colors would double as Christmas ornaments? I'm really happy to have them on the tree. We haven't known what to do with them, and they are so emotionally valuable. To have a way and a reason to use them, celebrate them, treasure them annually is so comforting to me.

So far, so good. Henry has been gone for 10 months on Christmas. The intense pain that accompanied Mother's day, his birthday, my birthday, so close to his death, has lessened. For this I am grateful. I'm cautiously optimistic that we will be able to enjoy, truly enjoy, the holidays and family, all the while missing him.

WIshlist

2009-12-04T19:08:00.003-05:00

I'm borrowing this poem from another site. Compassion Friends is an organization for bereaved parents. They have published a poem that really spoke to me; I've modified it to my own taste.

Bereaved Parents Wish List

I wish my child hadn’t died. I wish I had him back.

I wish you wouldn’t be afraid to speak my child’s name. My child lived and was very important to me. I need to hear that he was important to you as well.

If I cry and get emotional when you talk about my child, I wish you knew that it isn’t because you have hurt me. My child’s death is the cause of my tears. You have talked about my child, and you have allowed me to share my grief. I thank you for both.

Being a bereaved parent is not contagious, so I wish you wouldn’t shy away from me. I need you more than ever.

I need diversions, so I do want to hear about you; but I also want you to hear about me. I might be said and I might cry, but I wish you would let me talk about my child, my favorite topic of the day.

I know that you think of and pray for me often. I also know that my child’s death pains you, too. I wish you would let me know things through a phone call, a card or a note, or a real big hug.

I wish you wouldn’t expect my grief to be over in six months. These first months are traumatic for me, but I wish you could understand that my grief will never be over. I will suffer the death of my child until the day I die.

I am working very hard in my recovery, but I wish you could understand that I will never fully recover. I will always miss my child, and I will always grieve that he is dead.

I wish you understood how my life has shattered. I know it is miserable for you to be around me when I’m feeling miserable. Please be as patient with me as I am with you.

When I say, "I’m doing okay," I wish you could understand that I don’t feel okay and that I struggle daily.

I wish you knew that all of the grief reactions I’m having are very normal. Depression, anger, hopelessness and overwhelming sadness are all to be expected. So please excuse me when I’m quiet and withdrawn or irritable and cranky.

I wish you understood that grief changes people. When my child died, a big part of me died with him. I am not the same person I was before my child died, and I will never be that person again.

I wish very much that you could understand – understand my loss and my grief, my silence and my tears, my void and my pain. But I wish more that you will never understand.

I'm really lucky in that most, if not all, of the people I am close to understand this poem without having read it. I think the part that spoke to me the most was the third paragraph. I can't often talk about Henry without crying, and I see it scaring people away from talking about him. I wish I could control my tears, but it's not in my genetics, so I don't even really try. I do wish I could tell people I'm happy to talk about him and share, but usually I'm crying so much I can't get it out.

Doors

2009-12-04T18:54:00.003-05:00

It's been a rough week; I'm not sure why.

I'm still struggling with quiet time. There's been a lot of it lately. I'm still unaccustomed to not being needed all of the time. The girls kinda do their own thing in the evenings, leaving me with more free time than I can remember since college. It doesn't take long for my thoughts to settle on him.

I contine to feel like I'm making progress in my grief. I'm a little frustrated too. I feel like I'm in some Hitchcockian movie, trying to walk through an endless progression of doors. I work and struggle and sweat my way through picking the lock or figuring out how the door works, and when it finally opens there is relief, and a sense of progress, and....another locked door.

I'm not sure where I think I'm supposed to be, but I'm continually surprised that I'm here. It's like every day, sometimes every hour, my brain grapples again with the fact that he's gone. My son, my smart gorgeous funny healthy son got cancer. Oh my god, he got cancer. And then he got chemo, and infections, and a central line, and TPN, and radiation, and then the goddamn thing came back and he died. Oh my god, my son died.

Over and over and over.

Is this the denial people talk about? I always thought of that more in a literal way, where you really don't believe something happened. But I do feel at some level I haven't accepted it...

Bereavement

2009-11-26T06:26:00.002-05:00

I have a love-hate relationship with our bereavement group.

The first group we attended, I could barely speak. I spent the entire group fighting tears. The thought that all of the families in that room with us had lost what we had lost was heart-breaking. It was like a new club. We were no longer in the cancer club, now we were in the "lost a child" club.

But, like the cancer club, membership has it's privileges. Ok, maybe not. But just as the cancer club was not a bad place to be once you got over the fact you had to be there, this club is so valuable. I guess it's better to be in a club than on your own. The club part is your option, not the "lost a child" part.

In the cancer club you shared what to feed your kids when they had chemo, how bad certain meds were, where to park on which days in the hospital lot. In the "lost a child" club, you learn that Halloween is going to be more painful than you expected, how not to kill someone who tells you about their miraculous recovery because they prayed, what to do with the empty Christmas stocking.

This is the love part of the relationship.

I've noticed a pattern. A few days before we have a meeting, my emotional center of gravity shifts. I start to feel it pulling me down. Things that I often take in stride make me very sad. Last week the day of the bereavement group I cried all the way home from work. Our schedule so far has been every other week, but one month we went to 3 weeks in a row. Mr. Smak and I were both VERY down after that. Maybe it's coincidence, it's not like that's the only time it happens, but I'm seeing a pattern. This is the hate part.

Last week we went. The girls love to go, which continues to surprise me. It's a big time commitment for us, a long trip down and back, but they are disappointed when we can't make it. Anyway, last week we hit traffic, arrived quite late, and ended up driving a total of 3.5 hours for a 45 minute meeting. We sort of decided on the way down that we were probably going to quit going soon.

I don't know what word to put on it, but the group changes how I'm feeling. It is comforting, but that's not the word I'm looking for. There is something about taking the trip that we drove so many times with/for Henry that is in a sense honoring him. Invariably I cry, and leave emotionally drained. But there's a sense of relief....still not the right word. Kind of the emotional version of how your body feels after a very intense workout.

Mr. Smak and I were surprised at how good we felt when we left last week. The experience requires us to dedicate several hours to Henry, focus on him, his story, our pain and loss, and know that we are doing it again in a couple of weeks. In that sense it's meditative, or religious, I guess.

Alone, Part 2

2009-11-17T20:21:00.004-05:00

What fabulous comments on my last post...I received several in private email as well. As always, thanks to you all for the support.

I do feel it important to clarify, however, that my many theist friends are not at all excluding of me, or proselytizing, or in any way pushing me away. Many many have been so helpful, and supportive. I guess it's sort of a cultural difference...a different map of the world that makes me feel isolated. What they turn to for comfort is not comforting to me.

There has been the occasional acquaintance who says something useful like "How can you believe you'll never see him again? Wouldn't it soothe you to know that you'll see him again in heaven?" to which I (would like to) reply, "I'd like to believe he'll be alive in my Christmas stocking on December 25, but that doesn't make it so." The truth is that I don't believe I'll ever see him, hold him, talk to him again. I think when you're done, when the neurons in the brain stop firing for long enough, that you're gone. What many see as the soul, I see as physics.

In so many ways, I think this is liberating. As a commenter noted, there is no "why" in physics. There is no blame, there is no plan. There is random chance that a cell in Henry's brain underwent a genetic transformation after which it no longer obeyed the laws of it's fellow brain cells, and grew and grew and grew until it killed him. It happens predictably, based on probability. There's nothing and no one to be angry about. I got to skip that part of grief.

There is of course a flip side. When there is no god, no one skippering the boat, the question of futility looms large. Perhaps that is something that theists struggle with as well....my guess is that it has a different flavor.

I appreciate all of the support and suggestions, there were several leads I hope to pursue.

Alone

2009-11-15T13:13:00.004-05:00

In the final analysis, we are all really alone.

Sometimes I feel more alone than others.

I have a very supportive family, and a wonderful network of friends.

The grieving support group has provided me with another group of people who can relate to me and to whom I can relate in ways that my friends and family thankfully cannot.

But I have yet to happen upon another non-theist** who has lost a child.

I've read, and continue to read, several blogs of parents who have lost a child. Most are openly religious, in a structured sense. Church, prayer, reading and quoting the bible. Some are less structured, and appear to believe in god but in a less formal way. Angels, seeing loved ones in heaven, more prayer.

Allow me to formally digress into a disclaimer. I have nothing against religion. It is a useful and powerful tool in the lives of many, including many people whom I love and respect. It's just that I don't believe in god, and I can't imagine ever believing in god, just as strongly as those who do fervently believe in god can't imagine not doing so. It's part of the deep fabric of my being since I went through my own self-directed religious journey in my late teens. It may be arrogance, but I think that I've thought about god a lot more than many people who believe in god.

Anyhoo, I feel like the only one (my husband excepted.) I haven't met/read/heard of a fellow non-theist grieving a child. Of course, they exist...they must. I wish I could find some. We as grieving parents have so many emotions and experiences in common; our real and cyber-relationships are so supportive. But I get lost, feel shut out at times, when the healing turns to god and the relief that people seem to get from that belief and relationship. I just can't go there.

Where is the nearest Pseudo-Buddhist Non-theist American Grieving Parent support group?

**My newly preferred word for my belief system. Atheist is so loaded these days. I'm not anti-god, I just don't believe in one.

The end of Dr. Smak?

2009-11-14T10:38:00.002-05:00

I'll skip to the end. I'm not going to quit blogging. Yet.

This blog is faltering for me. Like my life over the past few years, it has changed into something altogether different than when it started.

Initially, I started blogging after finding I really enjoyed the medical blogs I was reading. There's a camaraderie in medical blogging that was fun. I was new to being a family doctor, and found delight and wonder in my day to day interactions with patients.

Just as my creative juices for medblogging were beginning to dry up, Henry got sick. I really didn't intend for this blog to turn into my group therapy sessions, but somewhere it did. It's hard for me to put into words how valuable this, and you as my readers, have been through the last 2 years. There was such relief in getting my thoughts and feelings out into the keyboard, and such support with each comment left.

This stage seems to be evaporating as well. My emotions are more stable, less intense, and more consistent. Predictability does not make for interesting blogging. For two years I've yearned for predictability; I'm not complaining. But I find my inspiration for blogging has diminished.

So I'm not sure what to do with Dr. Smak. She loves her patients, but finds it less and less often that they surprise her (at least, in good ways that are worth blogging about.) She misses Henry, but there too finds that the poignant moments or memories are more and more rare. She has lots more going on in her life, but does not think much of it of interest to her blog audience.

In short, I'm still blogging. But less.

The Greatest Generation

2009-11-03T20:04:00.002-05:00

Dr. Smak: So I understand that your back has been hurting for a week?

85 year old with hearing aid either broken or off to save batteries: Huh?

Dr. Smak (yelling): Your back has been hurting?

85 year old: Yup. I think I might know why.

Dr. Smak: Why?

85 year old: I dug 100 bushels of potatoes out of the ground last week. Do you think that did it?

Dr. Smak: Yeah. That might have done it.

Folks, they don't make them like this anymore.

Standing water

2009-10-31T05:35:00.002-05:00

Several weeks ago I mentioned that I was doing much better. Grief cycles seem so cyclic, I was a little afraid that I was just in the middle of a few good weeks, but the pattern has persisted, for which I am thankful. For a long while, the waves of grief would hit, unpredictably, intense, for hours or days, so intense that it almost translated into a physical pain. That doesn't seem to happen often anymore, and when it does, I don't feel so lost in them that I can't find my way out. The feeling is familiar, and while not pleasant is welcome as a part of me, a part of my loss of Henry.

I feel much more myself, with all of my assets and handicaps intact. I'm back to forgetting friends' birthdays (never really stopped that, but I had an excuse), avoiding exercise, actually caring enough about work to let it stress me out. Regular life stuff.

But it feels as if I am walking in three inches of standing water. It's not harder than it is for everyone. I'm not debilitated. In some ways, especially parenting, I think I'm doing a better job than I've ever done. But every time I move, every step I take, every thought I have is followed by sadness that he's gone.

I wished and wished for some relief when the grief was so intense. Sometimes I did not feel like I had the strength to carry it much further.

But I don't honestly know if this stage will ever pass. If it doesn't, that's ok. This is something I could do the rest of my life, hearing the splash, watching the ripples every time I move. Maybe I don't want it to go away?

Ringing the Bell

2009-10-20T17:56:00.004-05:00

My last post generated some comment conversation about Henry ringing the bell. I thought I'd give some details.

Henry's radiation at Hopkins took place in the same arena for kids as well as adults. He received excellent care there. We felt so very well cared for everywhere we went at Hopkins.

The radiation oncology suite for me was an odd place. There wasn't much privacy, and since Henry needed to have a general sedative for each session of radiation, we were often there for 2 hours to get 3 minutes of radiation. So we met a lot of people.

The first group was what I called the Prostate Club. I of course have no idea what their diagnosis was, but there was a steady group of well appearing sixtyish looking men in their business suits who would show up in the morning, quietly and without speaking change into a hospital gown, enter the radation room, and be off to their day. Then followed a motley crew of outpatients who showed up in various degrees of health, some in wheelchairs, mostly walking but looking tired, for their treatments. Occasionally, an inpatient rolled by in a stretcher, usually looking pretty sick. Sometimes we chatted and got the story, always sad, and sometimes they were too sedated. Everyone smiled at Henry (which is not to say that he always smiled back).

Near to the treatment rooms was a bell on the wall. When treatment was over, you rang it. I'm not sure if it was a thankyou or a f*ckyou to most patients, perhaps a weighted combination of the two. We saw many people ring that bell, from the prostate club to little old ladies clawing to get out of their wheelchairs and ring that thing. The staff, the patients, anyone around would stop and clap everytime it rang.

Henry loved to watch. He knew he would get to ring it on his last day. He used to whisper to me so no one could hear, "She got to ring the bell. I'm gonna ring it three times."

He didn't ring it three times. He rang it four times.

This is the poem that was posted next to the bell. I don't have a good shot of the bell. I'm not sure why he looks so serious in this picture, he was all smiles this day.

Tomorrow

2009-10-12T20:06:00.002-05:00

Tomorrow is the two year anniversary of Henry's diagnosis.

This time of year is so hard. The smells, the leaves turning, the crisp air, all brings so much back. His diagnosis, his surgery, our utter shock and horror, and then his relapse the following year coinciding.

Halloween is even worse. For the last two years I've put on a strained happy face so the kids could enjoy it, hating every minute. Henry was so scared in 07, it was just after his craniotomy and he felt awful. Last year was our Disney trip, we were trying so hard to feel happy, especially for the girls, but he again felt terrible.

This has been a hard week. A dear friend has received some bad health news related to her own child. I can feel her anger and confusion, it mirrors my own two years ago.

We have our bereavement group again this week, I have been looking forward to it since the last one. I'm hoping for a little relief.

Dreamy

2009-10-11T18:25:00.003-05:00

Shameless Product Endorsement:

Any knitters out there?

You have got to try Dream in Color.

Superwash wool, toss it in the washer, toss it in the dryer. Warm, comfy, mostly non-itchy.

I've only used Classy (worsed weight), but there's also Smooshy (sock weight) and Groovy (chunky weight).

Try it, you'll like it. The colors are to dye for. Ba-dum-dum.

Cancer Mom

2009-10-03T15:43:00.004-05:00

I don't follow many blogs about kids with cancer anymore. I knew a long time ago that pediatric cancer support is not the place for me to put my efforts. And frankly, more than half of the kids that I got emotionally involved with are dead.

But there are a few that I follow, kids who are doing great. And I feel great about that.

A few months back, one of the moms who blogs wrote of her guilt surrounding the complaining that she does regarding her surviving child. The constant anxiety about recurrence, the worry about scholastic achievement, fertility issues....so many things that seem small when compared to losing your child, but in day to day life are so, so big.

In the past, I've had what I see as sociologically primitive moments where I will see a child, Henry's age, and wonder why it struck my family. Uniformly, this happens when I see a child who, due to genetics or circumstances, is exceedingly likely to become intimately familiar with the federal justice system. Bad kids with awful parents. They aren't hard to spot. And I think about Henry....he was so smart, so strong, so handsome. He would have been, in all likelihood, an upstanding member of society, contributing, enriching my and other peoples' lives. It's not that they deserve cancer, hell maybe they deserve a break more than Henry did, but it seems a waste.

I don't feel good about those thoughts, but as with all things, it is what it is.

But I have never, NEVER, seen a cancer survivor and even for a millisecond wished for their prognosis to be switched with Henry's. I have never been angry at them, or felt malice toward their parents for their victory. I have nothing but joy in my heart when I hear about a kid who kicked it.

And though I would have done it for the rest of my life, gladly, taking care of a kid with (or who had) cancer is a merciless journey. And I don't miss it, even a little. The constant underlying anxiety, fear, desperate terror of relapse ate me up. It doesn't seem right to even say it, but dealing with that was harder than grief for me.

If any cancer moms or cancer dads follow my blog, know this: those of us who have lost a child are your biggest supporters. We love your children, and we want NOTHING but the best for them. Your victory is our victory.

Lite-Brite

2009-09-28T18:12:00.003-05:00

I've been better lately.

My thoughts, my moods are lighter, brighter.

I'm able to be quiet again. I'm able to think about the future without sadness again. Not all the time, but sometimes.

It's starting to feel normal, his not being here. Four plates at the table. The empty bedroom. The drawer full of unused sippy cups that we can't seem to get rid of. Not good, not expected, but normal. The hole that he left is slowly being filled in by time.

I have little use for guilt. I think I struggle with it less than most. I feel like I should feel more guilty than I do, but I don't. I think that's ok.

We went to a family bereavement group last week. It's the first one we attended, and the girls enjoyed it. I found it equal parts useful and exhausting. Many of the parents there talked about guilt. About feeling so bad about moving on and feeling good that they force themselves to go back to the pain. One mom, who lost her son to a brain tumor 18 months ago, said "It doesn't get better, it just gets different."

For me it is better. I hope that's ok.

Hopf Schwietz

2009-09-15T12:07:00.002-05:00

I'm certain I spelled that wrong. My interpretation of how to spell "GO SWITZERLAND" in Swiss-German.

I heard it 1400 times in one night, at the Switzerland/Greece World qualifying soccer match in Basel Switzerland 12 days ago. Mr. Smak and I were there, with brauts, beers, and our bucket list.

It was pretty cool. The Europeans sure like their soccer, er...football. There was a swiss flag on every stadium seat when we got there, pretty cool effect when they finally scored. Sorry for the crappy picture, not sure why it is so bad.

Our vacation, just the two of us, definitely counted as grown up. Lots of hiking in the Swiss Alps, a couple of nights in Paris, and very sore feet (walking) and bottoms (biking).

It might have been too soon, too early, but it's hard to say. We missed the girls terribly (thanks, SOCKS).

In a weird way, I was surprised to find that when we got home Henry still wasn't here. Of course, I didn't expect him to be, but I had such joy and relief at seeing the girls, and it highlighted his absence. Our first morning back was hard, but I'm feeling more settled already.

Into The Wild

2009-09-03T09:09:00.005-05:00

We watched this movie last weekend. It's a true story, screenplay adapted from a book written about a young, intelligent, accomplished idealist, fresh out of college, who went to find himself in the Alaska wilderness and died there.

I read the book a few years ago, I frankly can't remember when. I do remember enjoying it. Maybe enjoying isn't the right word. It's such a tragic story when looked at in it's entirety, but somehow inspiring in areas.

The movie, directed by Sean Penn, was really well done. Eddie Vedder of Pearl Jam sings the sound track, and it's just as haunting as the story.

I'm trying to figure out why it is sticking so deep with me. It may be that I'm listening to the soundtrack, bringing back scenes and emotions from the movie. It may also be that the story includes the agony of the protagonists' parents as they lose him first to his wanderings, and then his death. Obviously the circumstances differ from my own, but the similarities remain.

Or it may be that I'm not too old to remember being that idealist, that age and station in life where I, wearing my insecurities like a suit of armor, was so damn sure of myself that I can understand why Chris did what he did. Didn't we all feel that way? Didn't we all do stupid things, sure that we were right in doing them?

I worry about my girls. Chris didn't mean to die, he was just stretching his wings. But I guess this something that we all go through, part of becoming an adult.

Mr. Smak

2009-08-29T13:13:00.003-05:00

I know, more than most, that I can't do anything to help him.

I see him pause outside Henry's room, peering in for some sense of comfort.
I hear the acceptance of pain in his voice.
I see the slope of his shoulders on bad days, and know what it means.
I know the fleeting nature of joy for him now.
I watch him try to avoid the mines hidden in every day experiences.
I hold him when he needs it.
I look for places to give him solace.

I hate what this has caused in him, what it continues to do to him. It's his life, he can't and wouldn't escape it if he could, but I so wish he didn't have to do this.

It hurts me so to see him hurting. And I know that reciprocally, my grief adds to his.

All we can seem to do is acknowledge one anothers' pain, and promise to keep going.

Meds, part deux

2009-08-26T19:01:00.003-05:00

Yesterday was six months since he's been gone.

It feels like six months. The time has gone by, I guess slowly. It certainly doesn't feel like yesterday.

The grief, thankfully, is less intense. But omnipresent.

We've gotten to the point that life feels back to normal, for all outward appearances anyway. School, work, vacations, soccer, gatherings...we're back in our family rhythm, which is nice.

But geez, it hurts.

Stupid to say, like I thought it wouldn't. Essentially, unless my mind is fully occupied, the grief sits on my chest so I feel it with every breath. I'm tiring of it.

I wrote, about a year ago, about starting an antidepressant, for my constant and worsening anxiety about his possible relapse. I took one for a few months. Strangely, after he relapsed I didn't need it anymore. The anxiety was gone.

I know what clinical depression is, and I don't have it. Anhedonia, poor concentration and energy, feelings of guilt or poor self-esteem, sleep or appetite disruption. I don't have any of it.

But geez, it hurts. I'm sad a lot.

But that's not depression. That's grief. I honestly don't know if antidepressants help with dulling the pain of grief. Or if that would be a good thing? But I am thinking about it again.

On a lighter note, I'm also tackling my bucket list. No, I don't have any foresight into my doom, but I'm not sure what the universe has planned for me, and there's no time like the present. There's a strawberry cream cheese coffee cake in the oven, I might start tackling the perfect pie crust soon. And Mr. Smak and I are about to take that grown-up vacation I promised myself, complete with a professional European soccer game. It's not EPL, but for me it counts.

Happy President's Day

2009-08-14T04:44:00.002-05:00

I dreamt of Henry again last night. It happens so infrequently.

My family is out of town this week, and I've been trying to keep myself busy, and to avoid thinking too much about him. I didn't want to hit a real low here all by myself.

Recently work has provided some trauma to my emotional scab about Henry. Tho I see kids frequently, several of them have triggered emotion in the last few weeks. I enjoy them, but the ones who mention some of his favorite things with the passion that only a 4 year old can feel, or who wear the underwear he used to wear, or who giggle in the way he used to giggle, can catch me off guard. The memories are pleasant, really, but the loss of course isn't.

And occasionally we'll have to do something unpleasant to a kid his age. The screams of "That huwts" or "pwease pwease pwease stop" coming unexpectedly down the hall hit me like a baseball bat, and I'm back changing his Hickman dressing while my husband wraps his arms around him so he can't move and dirty the sterile field. He went through so damn much. I wonder if those memories would feel different had he made it, more badge of courage than futility.

Anyway, back to the dream. Funny, it's clearly due to my book, but he was time traveling. He was already dead, but showed up again for an unspecified amount of time, in our time. It was just wonderful. We knew he'd be gone again, but he didn't. He laughed so much, and was so happy, and he picked me to put him to bed. He talked about his sisters so lovingly, and asked me to read "The night before Christmas" to him. And just before I started he said, in the way he always did when he was explaining something, "Did you know that tomorrow is George Washington's birthday?"

Book Review: The TIme Traveler's Wife

2009-08-08T08:21:00.003-05:00

This is the first real novel I've read since Henry's illness began. Lately my knitting has waned, my concentration is improved and I feel like losing myself in a story is a more thorough escape from my mind's uncomfortable wanderings. I picked it up on the recommendation of a friend, who mentioned it because he was sure he'd be disappointed with the movie. I actually think it might translate very well.

The Time Traveler's Wife is written from the two perspectives of a couple in love, but tossed around by fate and time in ways that the rest of us aren't. It's well written, has some clever dialogue, and makes your mind stretch a bit to follow what's happening.

It's a love story, first and foremost, but there's also a lot in there about loss. How are death and loss different if you have access to time travel? Quite a bit. Henry (the protagonist) lost his mother when he was a child, but as an adult is able to experience her again. Henry's father was devastated by the loss of his wife, but finds her existence to Henry, albeit in a different and for him inaccessible dimension, comforting.

I do as well, thinking of my own Henry. My poor little brain isn't very adept at quantum physics, but I believe enough in the brains of others to trust in what they are saying. Sometimes I make the analogy in my head about time that we used to have about space. Hundreds of years ago, when someone made the trip from Europe to the Americas, families knew they would never seen each other again, never again occupy the same physical space. Henry and I will never again occupy the same time space, but in "sometime" he still is.

Mistakes were Made

2009-08-05T17:17:00.005-05:00

This looks to be a long post, and I'm feeling kinda preachy. Preachy atheists aren't that much fun, (are you listening, Richard Dawkins?), but this has been on my mind.

This American Life is a fun NPR program. The host and his reporters interview a large variety of people, often introducing a slice of life that I would otherwise be unaware of. Sometimes it's intensely interesting, occasionally I feel like I've just wasted an hour of my lfe. But its great for passing the time in the car, and you can download them onto your ipod for listening at your convenience.

On our trip last weekend, we listened to an episode called "Mistakes were made." The main story was about cryogenics. I very vaguely recall hearing something about this on the news, years ago. Turns out a bunch of laypeople in (where else) southern California became very interested in cryogenics. They really, really wanted to believe that you could freeze a person who had died, and eventually science will figure things out enough in order to thaw them and cure them of their illness so that life could continue.

But really really wishing for something doesn't make it so. Trust me.

They had some scientific advisors on the board of their official organization, who said the science wasn't there yet, but research was active and ongoing.

Until someone died. Someone on the organization, who really wanted to be frozen. So they froze her.

The advisory scientists fled, as well they should have.

The story snowballs from there, culminating in multiple bodies being frozen in faulty containers (piled up as they were only intended for one person), thawing completely from time to time. The protagonist of the story is at worst a criminal with poorly disguised malintent, at best a buffoon with good intentions.

Which isn't good enough for me. Why, oh why, do people who know nothing about science think that just because something sounds right to them, and at heart they have good intentions, they are remotely qualified to advise other people on what to do? In my daily universe this is the Suzanne Summers of the world. Naturopathic doctors. Some chiropractors. A whole host of well-meaning idiots, who do harm preaching how they wish the world work, as if it actually worked that way.

Sidebar, but a great outdoorsman has more respect for a gun than a punky kid. A great boat captain absolutely respects the dangers of the water, and the machinery he drives. And a good doctor or scientist understands and respects the limitations of their craft as well. (As promised....preachy.)

But my big issue with the story was the more obvious one. Do people...smart, functional, assuming somewhat educated....truly believe that we can figure out how to outsmart death? Really? If you consider that everything, everybody, who has ever ever lived for the last kajillion years is now dead, can you really see this as something avoidable? And who in their right mind would even want to be frozen, to be woken up in 50, 100, 500 years? Who would they know? Their friends, family will all be gone. Not to even touch on the issue of finite resources, letting someone else have a turn on the merry-go-round.

I don't really understand why that story got under my skin so much, but it did. We so need to come to grips with death. It is part of life, part of us.

Helium

2009-08-03T18:02:00.003-05:00

We had another family vacation last week, a long weekend on the water. We've spent enough time without Henry that packing for a trip and traveling with just the girls feels normal again, not like we left someone at home absentmindedly.

Though new experiences are less heart wrenching than repeating things that we had done with Henry, they are far from sorrow-free. My first thoughts at a new experience are always him: what would he say, what would he like, when would he laugh. I have wondered how I would "remember" him as I experienced things he hadn't; recently, my thoughts have been more on him at age 5 as he would have been, without cancer. He was such an athletic boy, exuding health. I pictured him on the kayak, rowing with him strong little arms. There was no bald head, no steroid-induced cheeks. It was hard, sad, but I tried to look at it and move on.

As the weekend went by, it got easier. I thought of him less and less, as seems to be the pattern in new situations. Consequently, my mood lightened, lifted, I was more able to pay attention to what was going on around me.

I seem to be presented with a dilemma. Some days he's present and heavy in my mind, almost as much as if he were here. Other days I'm very upbeat, focused on the now, and when he enters my thoughts I touch on him lightly and with fondness and move on again.

But most days I'm somewhere in the middle. I can consciously choose to think about him, and be sad, or to not think of him, and feel happier. My mourning is much less intense than it was, but it is very rare that I can think of him and feel happy, light, and good. I'm like a balloon running out of helium, and to look at a photo, or really experience a memory, or to hold a favorite toy causes me to sink to the floor.

Which is of course tiring. And probably not great for me, or my family. So I find myself often pushing him away, out of my conscious thought.

And I don't feel great about that. But I'm not sure what else to do.

A little Jimi thing

2009-07-25T08:55:00.003-05:00

My annual Dave Matthews Band concert review:

We had a great time. We had no proximity issues with annoyingly trashed people, probably a first. There were plenty of annoying people, trashed people, and people we shared personal space with, but this year fortunately none that met all those criteria, at least at once.

When we arrived to tailgate, a thick summer storm was working it's way out of the area. By the time the concert started, it was cool, clear skies. Perfect.

Dave normally doesn't get real dressed up for anything. Last night, though, he really looked like he had just rolled out of bed. Maybe a quick shower next show?

The band played well. There were several great songs off of the new album, and several really fun older ones. I got to see a couple older ones (Jimi, #41) that I had been hoping for.

Best part of the show was where the drummer and the new saxophonist jammed together. Amazing. Readers may recall that the longstanding saxophone player with the band died accidentally last year. Jeff Coffin of Bella Fleck and the Flecktones stepped in. Though Leroi Moore was part of the history and soul of the band, Jeff's skills really outshine Leroi's. I really enjoyed him. The man can play two saxophones at the same time. Really. Two in his mouth. Fun.

A great tradition, a special night. This year we've booked another show to take the girls in another few weeks, give them a little Dave fever.

Squirm

Not sad, when you're gone
But when your light’s still on
Your dreams wont let you fly
Don't be dead before you die
Hunger, till fed, give love instead
When it gets inside, watch the dead man squirm

Above all things
If kindness is your king
Then heaven will be yours before you reach your end

Robbie

2009-07-24T05:23:00.003-05:00

I saw him first, coming off the elevator with his N-95 mask on, dad in front, mom behind, and a cute blond next to him. It was the mask that grabbed me; if you could hover over it with a mouse a text box would pop up that said "I have cancer." He whipped it off, but I didn't recognize him. I had never seen his face before. But his parents I remembered.

They walked past us, and we stood awkwardly facing them until she made eye contact. Robbie's mom remembered me, we had spent a couple of late nights talking in the parent lounge, not believing either of us were really there. Robbie, a teenager, had been diagnosed very close to Henry, with leukemia. His stem cell transplant happened some time after Henry's, but their stay in off campus housing overlapped ours a little. That was the last I had seen them. It had been over a year.

Robbie's head of hair was evidence that he hadn't had chemo in some time. I had never seen him out of bed before. He had been so very sick. The cute blond next to him, his sister, made the head of hair admit that Robbie was only pretending to be healthy. His skin was a bit mottled, his hair thinned like a middle-aged man.

His mom and I chatted briefly about how he was doing, then she looked around and said, "Where's your son?" I thought it was so obvious, standing there with my red-rimmed eyes after a day of visiting Henry's old nurses at clinic to commemorate his birthday. But of course it wasn't. He could have been getting a transfusion, or having an MRI done, with us hanging out in the cafeteria until he woke from sedation.

I told her he was gone. She was surprised, horrified, but she looked at it. When you've lived it, like she has, you can look at it in a way that other people can't. She stood for a long time, searching my eyes. I could feel her questions. "How is it, there, where I thought I may have had to go?"

I cried again. We hugged, she whispered to me "I'll never forget you."

Sympathy, Empathy

2009-07-18T14:08:00.002-05:00

Family docs spend a lot of time listening to other people's problems. It's a valuable and important role we play in the physician/patient relationship. This is a lot of where I experience the "privilege" of being a physician; people reveal deep, personal, intimate details of their lives to me, often without blinking. It is a humbling experience to be trusted so.

Of course, some people will reveal those details to the schmuck next to them on the bus, but that's off topic.

I've found that my experience of this relationship has changed slowly since Henry's death. During the time he was in hospice care, and for my first several weeks back to work, it was hard to not quietly compare my patient's life angst to my own. Obviously, a great many paled in comparison. Many of my patient were exquisitely aware of this, and very embarassed to come in to see me and complain about their relationships, finances, stress levels, etc. Of course I reassured them it was fine, that my loss certainly didn't encompass the world.

Occasionally, I had negative emotions about this, mostly with insensitive, whiny patients. Honestly, that's not much different than I think it is with everyone.

But over the last several weeks, I feel myself healing. My loss is not as acute, at least some days. As anticipated, my experience of Henry's life and death has changed me.

I find myself more empathic. I feel I connect more to the experiences people are having: the losses, the stresses, the disappointments of life. Cliche, yes, but I can feel their pain. I have lived it.

And I find myself less sympathetic. My view of life has shifted such that I no longer expect or anticipate perfection. The fairytale is over. And it's ok, really. It is what it is. But for so many people, it isn't. There is such angst over what isn't. The perfect job, the ideal family, the best vacation, good health until you drop dead of an MI at the age of 97. For so many people anything less is a disappointment.

I'm not angry at people for feeling this way, or judgemental. I too was there. But my world view has a different perspective. Like a third-world missionary who returns home to find our excesses despicable, my life landscape has shifted. I don't feel sorry for people anymore. It is what it is.

I hesitate posting this. I have several friends and family who read this blog, and I don't want at all for people to feel that I don't care about their hardships. I do. I guess I just expect them.

My Second Political Post

2009-07-15T20:29:00.002-05:00

A followup to my First Political Post.

Thank you, President Obama. Our Surgeon General Nominee is a family doctor!

I don't know Dr. Benjamin from Adam, but I'm way more into her as Surgeon General than Dr. Gupta.

Poignant

2009-07-14T16:07:00.003-05:00

I'm feeling really good right now. Not sure why. My grief seems to travel according to it's own schedule. Strangely, it has nothing to do with my mood. It's like I've grown a new emotional capacity called grief, separate, of course linked, but separate from the ones I already had. I'm adjusting to it.

Henry's fifth birthday is next week.

I'm not in serious grieving mode, but every time I think of it I all but burst into tears.

I don't expect it to be a pleasant day. Maybe we'll be able to spend it in happy memories, but I kinda doubt it.

poign ant, adv.
a. Profoundly moving; touching: a poignant memory.
b. Physically painful.
c. Keenly distressing to the mind or feelings.

Fireworks

2009-07-11T18:43:00.002-05:00

The sadness seems to come and go, in cycles at least a week at a time. A few weeks ago was a very difficult time for me. I was completely crushed by the fact that Henry had never chased and caught fireflies. Every time I saw one all of the things that he never got to do started to line up, one after another after another until I forced myself to break the train of thought.

There's a lot he never got to do.

For the Fourth of July, we went to watch our local fireworks display. As the four of us waited for the sky to darken, the fireflies began their dance.

I remembered that Henry had seen fireworks, twice. We had been to our minor league baseball stadium the summer before his diagnosis, and he watched them then. He really loved them. And, when we were on his Wish trip to Disney we watched them one night. He liked them briefly, but wasn't feeling well and on so many medications that he didn't remember it later. But I had a real sense of calm that he had seen them.

I thought a lot about that as we watched the fireworks that night. I can't measure every event in my life on the measuring stick of whether or not Henry got to. Clearly the stick is too short.

And isn't it for all of us? Even in a full, blessed life in these modern times and with modern amenities, there is so much that life has to offer, we can never do all we want to do.

Acceptance.

I keep coming back to this, and wanting to write about it, but struggling with how.

The desire for what isn't can torture. The acceptance of what is soothes. There is pain, and grief, and hurt, along with the wonderful memories I have of him. But I don't need to add to it.

Quiet

2009-06-27T05:23:00.002-05:00

I miss the quiet.

Rather, I miss enjoying the quiet.

I've always loved quiet, early morning cups of coffee, or sitting along at the pool and daydreaming, or watching a fire crackle.

It's always been great thinking time for me, I could turn off my conscious thoughts enought to let my mind wander to less trodden paths, get new ideas, remember old ones.

Now my mind wanders about as well as a dog with a next door bitch in heat.

Sometimes I remember good things, happy things about him, that make me smile. They still hurt though, and I can only do it for so long before the mood of the memory shifts to pain and grief. More often my mind replays painful memories, the bad times in the hospital, the times I regret how I responded to him, the early signs of his illness. And very often his death. The last 60 seconds of his life. It was a quiet and peaceful death, overall, but such a traumatic memory for me.

Sometimes when I'm feeling strong I'll replay it over and over in my mind, hoping that my brain just needs to get through it a certain number of times before it can let it go, but so far it hasn't worked.

What used to be a solace is now a problem for me. I really can't be in the quiet very long. I think this is a big reason of why work has been so enjoyable to me lately...for the most part I'm too busy to dwell on anything. Fortunately, my work setup is such that I can't work more than my regularly scheduled hours, so a pathologic escapism is not an option for me, but geez do I see how some people do that.

I feel like I no longer plan ahead, dream of the future, like trips, projects, life changes. Maybe that's because of the grief, or our family's recent life where we couldn't plan more than 24 hours ahead for anything. I don't feel like I'm coasting, but I'm definitely just riding in the old ruts, not really looking around much.

But I wonder too if it's because I can't just be anymore.

Her too

2009-06-25T20:26:00.003-05:00

She sat on the exam table and expressed her condolences. I forgot till she started talking that she had lost a son, too.

It's been 5 years for her. He was an adult, but just barely.

"It's been 4 months today," I said, and started to cry.

She said she was sorry to tell me that it gets worse before it gets better. The third year was really hard for her. As much as that sucks eggs, I'm glad she told me. Talking to someone who has lived through this is like talking to a sister...you don't have to explain yourself, or backtrack, or sidestep. She just gets it.

She said, "My mom told me I had to make a choice: crawl in a hole or keep going."

She's right.

I'm doing ok with the keep going part. She's not the first person to tell me that it will get worse. Everyone navigates this differently, but I suspect they are right.

So I'll keep going.

Baby Blue

2009-06-18T20:04:00.003-05:00

Once again, geeking out on Dave. The summer tour is in full swing, and I'll get to see the band play in about a month. It's easy to geek out on a guy who is not only a fabulous musician, but as a friend recently noted, somehow is super yummy even though he always looks like he just finished mowing the lawn.

The Dave Matthews Band has a new album, Big Whiskey and the Groogrux King. There's some really good stuff on it, check out Seven and Why I Am for my favorites.

I so often find a piece of his songs that speak to me, that relate so much to me or my life. The mark of a great artist, to touch many people in many ways.

This one is not just a little uncanny. I can almost believe it was written for me.

Baby Blue

Confess, your kiss still knocks me off my legs.
The first time I saw you was like a punch right through my chest.
And I will forever, ‘cause you’ll forever be,
My one true broken heart, pieces inside of me and you forever,
My baby.

You will rest your head, your strength once saving.
And when you wake, you will fly away,
Holding tight to the legs of all your angels.
Goodbye, my love, into your blue, blue eyes.
Your blue, blue world.
You're my baby, blue.

Confess, I'm not quite ready to be left.
Still I know I gave my level best.
You give, you give, to this I can attest,
You made me, you made me,
You and me forever, baby.

You will rest your head, your strength once saving.
And when you wake, you will fly away,
Holding tight to the legs of all your angels.
Goodbye, my love, into your blue, blue eyes.
In your blue, blue world.
You and me forever.

Dave, man, if you ever read this, thanks for your music.

Oh, and call me.

Sugar Snaps

2009-06-16T18:05:00.003-05:00

Since we moved to our new house I've had a small veggie garden. The kids have always loved it. I now champion gardens as as great way to get kids to eat more veggies; things from the garden are either more interesting or more palatable to them for some reason. Mine would at least always try what we grew, and often ate most of it. Even the brussel sprouts.

Henry loved the sugar snap peas. When he was three he loved to pick them and eat them in the garden. Last year he was very close to his stem cell when they were ready for harvest and he wasn't allowed any fresh fruits or veggies due to his immunosuppression. He would dutifully pick them for me to eat, and seemed to enjoy it almost as much that way. But when he was again allowed to eat fresh produce, they were no longer bearing. All winter long he asked when the sugar snap peas would grow again. He even got some green stuffed animal as a prize and named it "Sugar Snap". I don't even remember what it was.

The frozen ones from the store didn't cut it. I'm not sure he would have eaten fresh ones anyway, his relapse and the meds he took clearly altered his tastes. But he wanted them.

I planted them again this year. They came up poorly, reluctantly, scarcely half of what came up last year. They are bearing now. Last week we picked a bowl, they sat on the counter till they were limp and inedible. I'm not sure when or why the kids lost their taste for them, but it appears they did. I wanted to want them, but couldn't.

This week we picked more, and yesterday I forced one down. It was delicious, as all fresh from the garden sugar snap peas are. So I enjoyed the rest, a bigger step than it seems. I think it was a good thing.

My belly button

2009-06-14T19:23:00.003-05:00

My poor readers, I abuse you so. I'm not certain why you're still along for my constant self-absorbed navalgazing, but I guess you get something out of this blog. I'm feeling quite guilty when I look back on my last several posts. They don't reflect very well my state of mind, overall. Unfortunately, my urge to write is wrapped up in looking for a catharsis for my grief. Hey, whatever works. But to look at the blog I should be close to slitting my wrists, and I'm far from that.

Overall I feel really, really good about my life. The grief continues to come in waves, and the days that I spend constantly biting my tongue so as not to cry are the days that I have to get it out, to come up with yet another metaphor for my grief. So through the emotional muck I drag you. It's not really fair of me.

The Smak family had a great weekend. A weekend trip, we revisited old roots, and got reacquainted with some old friends, going back to the town where we lived for eight years before relocating to get back closer to family. It was heartwarming in so many ways; definitely some good new memories. I didn't think of Henry as often as usual, which was ok with me. I was able to talk a lot about him without it hurting, again welcome. It was strange to see our old next door neighbor on her porch, we stopped the car when driving by the old house to say hi. The girls were put through the obligatory "My how you've grown" and I realized she had no idea that we had birthed and lost another child in the interim. Part of me wanted to mention him, but of course that wouldn't have been fair to her.

It was a whole part of our lives as a family that he was never a part of, and never will be. And I want that to be ok, because there's a lot more to come that will fall into the same category.

Anyway, readers, I'm pretty good. Not great, but good most days. I figured that I'd throw you a bone.

Bleeding

2009-06-04T20:29:00.002-05:00

Sister Smak told me that when Henry died a piece of me would die with him.

I honestly didn't know if she was right. I didn't know what to expect.

She was close. It's more like a permanent injury, a cut that won't heal. I'm slowly bleeding, every minute.

Distraction helps. I can't staunch the flow, and I don't try to. I'm aware my compulsive knitting is a coping mechanism. It seems benign enough. Strangely enough I'm enjoying running, again a distraction. Whenever I sit, quiet, without distraction, I feel it, hear it, watch it bleed.

It makes me feel vulnerable. I feel wounded, weaker, and afraid that another hit might make me falter. Proactively (compulsively?) I'm trying to be very careful with myself, my family, my life. Seems a reasonable way to cope.

Right now I'm keeping up with the bleed. Taking my theoretical iron. I remember seeing a man in my 2nd year of medical school with an H/H of 1 and 4 respectively. White as a sheet is an apt descriptive term. He had a slow bleed, so slow he hadn't noticed.

Is that me?

Everywhere

2009-06-01T19:32:00.003-05:00

You are everywhere.

Every firetruck I pass is yours.

The sugar snap peas in the garden grow for you, I can't eat them.

When I lie in your bed by myself and cry, I can almost feel you next to me.

You're in the tub with your big sister, but she can't see you.

The birds eat your birdseed, and I fill it for you.

Every boy on the street on his bike is you.

Oswald plays for you on tv, waiting for you to watch.

The flower named for you blooms on the trellis, last year you held it.

Your locker across from mine, holds your shoes, hats, coat.

You are everywhere, but here.

Uneasy

2009-05-30T05:51:00.003-05:00

Yesterday I saw one of my pediatric patients, who was close to Henry's age at diagnosis.

He's had rough month illness-wise, and enough unusual symptoms that my doctor-skin-on-the-back-of-my-neck is prickled. Just enough to start wondering if he has cancer.

I think about cancer all the time in my patients, but it doesn't come up often in my pediatric group. Any good doctor should. Sometimes I mention it, sometimes I don't, depending on how much I'm worried, or how much I perceive my patient to be worried. I remember one older boy, just as Henry finished treatment. He wasn't my patient, I just happened to get involved in his care one day due to his regular physician being out. And I very quickly extracted myself from the situation. I found myself nauseated every time I saw his chart. He turned out to be fine.

This little boy is mine, though, and I know his mom well. I didn't mention the "C" word yesterday; I couldn't tell if it was on her mind, but she is a bright woman so it probably was.

In an eerie coincidence, she had just shaved his head. He so reminded me of all the little children just regrowing their hair. It certainly contributed to my unease.

I had flash memories of Hopkins the rest of the day.

The Question

2009-05-18T17:27:00.003-05:00

I got the question, for the first time.

I was sitting on the soccer field sidelines, watching my middling play. My older daughter (who needs an internet nickname) was on another field at her own game.

The mother of a teammate I didn't know asked me, "How many children do you have?"

Ugh.

Somewhere an answer must exist, like a good banana split. One scoop of he-will-always-be-one-of-your-children, one of can-you-come-up-with-a-more-jarring-comment-than-my-son-is-dead, and throw in a gawd-I-don't-feel-like-crying-in-front-of-these-strangers. Top with my innate ineptitude with small talk, the fact the family on the other side of me knew Henry, and sprinkle on the distance this other woman was away causing me to all but yell.

I hate banana splits.

I said something like "I have two now, my son died three months ago."

She was very gracious, talked about the girls, and then asked how old he would have been. I was then able to talk a little about how he had died without making her ask. It ended up being a nice conversation, and I didn't cry. This was entirely due to her social grace and genuineness.

Maybe I'll get better at it. It is sure to happen again.

My Middling

2009-05-13T13:26:00.003-05:00

I'm sure I've broken all kinds of universal parent/child trust laws by doing this, but really, she's too young to know.

Here's my middling's latest journal entry.

I have to agree.

Illusion of Control

2009-05-12T19:27:00.002-05:00

Is the illusion of control over our lives a western trait, or more a human one?

We expect, in the middle class of this country, that if you study hard, do your time, eat your veggies, go to church, play by the rules, that things will work out for you.

We know, cognitively, that this isn't necessarily true.

But I believed it. I think most of us do. My version of faith, perhaps?

I don't think it's a bad thing to believe. It's a good motivator. Makes you feel good about yourself, your accomplishments, the people you love.

It's a shield, a forcefield. An invisible airbag that must be there, to protect you if you were to be sideswiped, or rearended.

I don't have it anymore. Lots of people don't. Anyone who has been rearended, and not seen the layer of airbag dust settle on their lives know they don't have it. It makes life more scary.

Is it better to believe in an illusion, or not? To believe that things will just work out well, since you are doing what you are supposed to? It seems easier, gentler. And if nothing "bad" ever happens to you, maybe better.

Would it make life's challenges easier if you weren't surprised that the airbag wasn't there? Maybe. Maybe not.

I'm not sure if I want the illusion back. I'm not sure if it's my decision to make anyway.

Happy Mother's Day

2009-05-10T07:39:00.002-05:00

Henry was never old enough to make me a Mother's Day card with a fat red crayon, the words trailing down the side since he hadn't planned ahead and left enough room.

It makes today easier, because I don't miss it.

When your young child dies, what do you miss? My ten year old used to make me those cards, and her four year old self is as absent from me as Henry is. I'm certain I don't remember Mother's Day with her at age 4.

Right now I miss him, as he was when he died. Is that what I will always miss? Will I "miss" him as he would have been at age 10? Can you miss what never was?

I've never been overly into Mother's Day, except for the fact that it tends to land on a sunny spring Sunday. I don't expect today to be awful for me, but I've been unexpectedly broadsided enough times that it wouldn't surprise me. I am forever fortunate to have my beautiful girls, and will try to keep that in mind today.

When I'm not feeling so sad, I can be grateful for being Henry's mom too. Some days I can't help that being outweighed by missing him.

Update

2009-05-05T17:09:00.002-05:00

I've been struck with an utter lack of profundity, hence the lack of blogging. I'm pretty busy, and pretty tired because of it.

I walked/ran a 6 K last weekend, to support one of the charities that supported us during Henry's illness. I really enjoyed the whole experience, but haven't exercised since.

We got a new dog. She's cute, but the little piddle spots aren't.

I'm back to working full time. I am enjoying it on a variety of levels, but I regret that I'm not home more. It's definitely my comfort zone, where I can really let down if I need to.

My sister had a baby. He's gorgeous, and I love to see their family grow. I expected to find my emotions regarding it a little tough, but I haven't, a pleasant surprise.

The pain of his death is passing, the constancy of my grief becoming more apparent. At first the emotion was so intense it was unsustainable, and seemed to rise and fall without warning. I seem to be at a more stable place now, but I don't get much relief.

I miss him so much.

Dreams

2009-04-24T19:26:00.002-05:00

I dreamt about Henry last night.

The two-month anniversary of his death is tomorrow. Last night was the first I had dreamt about him. I've been wondering, waiting for it.

In residency we had some lectures on helping people through the loss of a loved one. We learned that many people hear, or see, their loved one after they are gone, and how important it is to normalize it, lest they think they are crazy.

I have so been hoping to see him, to hear him. After years of hearing him call "Mommy" from his room, I long for his voice, even if it were just a memory merged with a hallucination. Sometimes I'll see something out of the corner of my eye, but disppointment follows when it turns out to be an out-of-place chair.

Last night in my dream, he was how he had been the few months up to his death, happy, solid, warm. I drank in his face, his voice, and held him in my lap as I sat cross-legged on the floor. I knew in my dream that it was just a dream, that it was what I've been waiting for. He didn't, and played and talked to me.

It was wonderful. He was so healthy, so happy. I kept my hand on his wrist, to feel his strong and regular pulse.

It was wonderful. I hope he visits me again soon.

Spring has sprung, sort of...

2009-04-19T07:01:00.004-05:00

Dear Patients,

It's nice to see you. I always enjoy our visits.

Let me know what ails you. Runny nose? Back hurt? Need refills?

But please don't tell me something is wrong with you, because you are cold all the time for several weeks now.

I know it's the second half of april. I know we all really, really want it to be warmer out than it is.

I'm just as tired of my sweaters and thick pants, browns and reds as you are. I can't even bring myself to wear them.

My light cotton short sleeved sweater has me pretty chilly. Because the temperatures (yesterday excluded) are pretty much a nice day in January. If I had been wearing two layers and my down jacket I would have been right toasty.

We all make our choices. But don't ask me to fix it for you. Put on a sweater.

And please schedule your September appointment for "I'm sweating all the time." I can't wait to see your new fall fashions.

Dr. Smak

Things

2009-04-17T20:07:00.003-05:00

Things I've learned (or relearned) in the last few weeks:

Sunlight helps.

As much as I would like to be an athlete, I'm not.

I get a small high if I take Excedrin and drink a cup of coffee before 7 am.

Crying about Henry, in small controlled bits and regularly, is good for me.

My girls are growing up, so fast.

My husband is fabulous.

Cute shoes help too, probably more than they should.

I'm doing much better this week. I'm not sure why, but this week I can remember him and cry happy tears, which has been really nice.

Groundswell

2009-04-08T21:43:00.003-05:00

It's getting bigger and bigger, stronger and stronger.

I fear I don't have a clue how big it will be. I'm not afraid of it, but not really excited about embracing it either.

I thought that I had already done some, in anticipation. I thought that 18 months of pain, fear, dread of the inevitable would have given me some progress, but I think I was wrong.

When he was first diagnosed, and in treatment, and then after relapse, there was so much to do. Some of the time we were in shock, but most of the time we were busy. He needed tending and energy, money had to be earned, appointments kept, the girls cared for. Carpe Diem. You only have so much time with him, don't waste it grieving, there will be plenty of time for that.

I haven't gotten through any of it yet. I'm back in October 2007, shocked that my healthy, smart, beautiful son is sick. Has a Hickman. Has lost his hair. Is in the hospital. Is losing weight. Is throwing up. Keeps falling down. Is scared.

I haven't done any of this yet. There is so much to do, to get through. I forced it all down, away, so that we could live while he was here. I guess it was the right thing to do. It was the only thing to do.

I can feel my brain grappling with the acceptance of it. He has cancer. He's going to die. He died, right here, where you are sitting and watching TV, he died. He was so so sick, for so so long, and he was only four, and he died.

I have so much to do.