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Tuesday, May 30, 2006

The weeks after

It seems like a lifetime ago when I would write--almost daily. My day wasn't complete until I sat down and shared some introspection with the world. It was so important to me, to my identity as an invisible at-home parent. It mattered. When I wrote I wasn't invisible anymore. I would sit bleary-eyed at the computer until late at night when the only sound was the tapping of my fingers against the keyboard and the ticking of the Einstein clock above my head.

Then my kid needed surgery--yet again. I could barely write. I could barely sleep. I could barely eat. Those are all bad things for a parent. Those are all really bad things for a pregnant parent.

Now we're on the other side of that harrowing experience, and I'm trying to remember who I am, who I was before we went into that storm. And it seems that I've come out a different person. I'm not just a woman or a mother or caretaker or a friend or a wife. I'm someone who watched my son nearly die. I'm someone who cried for hours every day. I'm someone who felt pain so deeply that it hurt to eat, to drink, to wait, to breathe. I watched my son crawl back from the edge. I watched the staff draw blood from his neck, rip tubes from his chest, be so weak that he didn't have the strength to hold up his head or lift his arms. He wouldn't look at us, talk to us, ask us for help or tell us when he was hurt. He wouldn't smile or laugh. He barely cried. He was stoic. He was sad. And there was so little we could do besides be there with him and try to comfort him. During those five-and-a-half weeks his body was transformed. After surgery, he was swollen, so bloated. Then he started to disintegrate, losing nearly 20 percent of his body weight. And now he's so small, so skinny, so boney, so different. He has been cut and poked on every part of his body. He has scars on his arms and legs and wrists and chest and stomach and neck.

I was scared to feel optimistic. I was afraid to love him completely, as if my body was trying to shield itself from more hurt, from what seemed inevitable. So many times my brain was trying to capture the essence of what we were going through. Even when it seemed that things were getting better, they often got worse again. My mind kept focusing on life after death. I'd always thought about those words as if it was for the person who had died. The journey they would take after they died. But those words seemed to take on a new life during those weeks. My mind was thinking about my life, my husband's life, my unborn child's life after the death of my son.

We are so grateful that we have him home now, even if he is smaller than before. He's alive and we have been given the gift of getting to know him more as he grows. Writing no longer sustains me. Those weeks in the hospital were so raw, so physical, so present. My writing is so abstract, so sedentary, so transparent, so insignificant.


  1. Hey Suzanne,

    you may feel your writing is insignificant but you are able to put into words the very feelings and sensations i experienced last summer when isaac was in the hospital for 6 weeks with his life-threatening pneumonia. i dunno, i really appreciate your words. ALOT. ALOT. ALOT. ALOT.

    it's really amazing the energy your son received during his time in the hospital -- from you and Ken and all of the medical staff and all your well-wishers... when i think of it it makes me cry.

    i really love that you are on the other side and i eagerly await your future "insignificant" writings. because soon, my friend, they'll feel significant again. because you are still you. :-)

    much love to you!!

  2. I know how blogging can feel like a compulsion. The bottom line is to write for yourself, and if you don't feel like writing, well then I can't think of anyone who deserves a rest more than you do.

  3. Thank you for the update. I can imagine how an experience like the one you went through with Riley would be life-changing.

    Hope things return to normal (whatever that means) soon. Take care.

  4. Anonymous2:18 PM

    We all seem to have momments where we wonder if what we do means anything. Watching you guys was so hard, I felt so helpless, as if trying to bring a little support would make it better. We are so happy to see TIC's comeback - but I think you all changed a little . Even TIC seems a little wiser - a bit beyond the casual life. Perhaps its a sad thing or perhaps he'll just see life as a little bit more precious then most. I'm just looking forward to seeing how everything moves on, the birth of another lovley boy and the growing friendship I've been honored to make.

    p.s. i still think your writing is important :-)

  5. I hope you do continue to write because this was (or still is) a passion of yours that defines you, beyond being a wife or a mom. Although this experience your family went through was truly difficult, and something I can't even begin to imagine. Even though the worst is thankfully behind you, I can see how it will take a lot of time to get back to some semblance of "normal". But do take care of yourself and do what you need to do to recover. I have to say that I am so happy to hear that Riley is doing much better. Thank you for sharing his blog with us so that we can check on his progress.

  6. Anonymous2:35 PM

    As a soon-to-be mother of 3 who discovered your blog a while back, I must say this was one of my favorite entries.

    I've been following your experiences with Riley for a while and thinking (and praying) for his recovery. I am very happy to hear he's back home again. I can't imagine how hard it must have been for him, you and your family to have endured through those weeks at the hospital feeling life's vulnerability so up close.

    Your writing makes me laugh, cry, and aware of other mothers out there going through similar experiences. I know writing or working on anything else now may seem insignificant to you, but keep in mind that your writing has inspired me (and likely your many other readers) in my quest to be a better mother every day.

    Take a break but come back now and then to continue inspiring your readers.

    All the best to you and your growing family!

  7. Anonymous2:47 PM

    Hi Suzanne,

    Jeff is down with Katie, Tim and Kat for Zareens wedding so guess what I did last night, read your blog archives. I had a really good time doing it.
    I first have to say our hearts go out to you and we pray that you don't have to watch your son go through such horror again. It isn't the same but my mom has a terminal illness and I have watched her come back from the dead too many times and it is devastating all around.
    I felt compelled to e-mail because reading your archives made me happy. I don't struggle with the same issues you do but I love reading about struggles because we all have them. You wrote about yours so openly and I appreciate that. It made me want to be more of me.
    Good luck with your upcoming birth. I think you'll be amazed at how much "the siblings" love and entertain each other by about 4 months. We have a just turned 2 (May 9th) and 5 month old.
    Best Wishes,
    Lisa Brandolo Johnson

  8. Anonymous1:10 PM

    Parents who go through the roller coaster ride that you have been on and are still on feel this exact same thing. Do you remeber I asked you about wheather UCSF had ECMO reunions with kids? I see these families come back year after year, each one with a different clinical scenario and out come, but each family sharing this one experience. The one thing I see and hear each of them talk about is the life "after the hospital". For so many days you held sleepless vigils at Riley's bedside, nights lying in a room with other kids and parents, beeping monitors, pumps, IV's suction tubing, bubbling chest tubes, staff drawing blood and labs every hour. No sleep. Constantly afraid for bad new, but equally afraid of good news out of fear of being let down.
    Jobs on hold, scheduals on hold, Life Interrupted. you are thrusted back into what once was "your life", only its not anymore...or at least it doesn't seem to be. It is so far removed from the cliff you were teetering on. It seems insignificant.
    This is what I have heard time and time again. The one thing that gets many of these mom's and dad's through this is returning to their passions. One mom (who was an artist)told me she used to paint everyday up until her son was on ECMO for 3 weeks in the hospital for 2 months. I saw her and her son last spring during an ECMO reunion and she said for 3 months after her son got home she didn't paint. She felt like she didn't deserve too. "What did it matter. My son almost died and where did I get off painting. I gave everything i had those 3 weeks he was on ECMO and I felt like I had nothing else to give." she said. It wasn't until she realized that painting was her coping mechanism. It allowed her to get back to being her again. Focusing on herself was ok. And when she finally realized that, she said, she felt like herself again. Going to the yearly reunions also helped her help others realize this as well. Know that your words are helping others...and more importantly they are helping yourself. Some people run, others bike, some paint, you Suzanne; You write. Don't loose sight of that. It may take time, and blogging may not end up being medium you want to return to, but write.

  9. I am so sorry, again, for all that pain - for him, and for you and your husband.

    I hope he continues to improve and becomes himself again.

    I wish I could do or say more.

  10. suzanne
    i will always be here to hear what you have to say. you have so much to teach us. You are a strong lady and things will eventually be a bit easier. Take Care of you !