Saturday, June 19, 2010

With Me, But Not Belonging To Me.

Today was the semi annual ECMO reunion at Children's Hospital. Also the 25th anniversary of the ECMO program.

I'd gotten the invitation a couple months ago, and was given the day off by my director of nurses whose daughter works with ECMO patients at Mass General. She knows what a big deal it is, and didn't hesitate to grant me the day.

We've only been to one before, when I was pregnant with Bea. They throw quite a party for these children who shouldn't be. Arts & crafts, face painting, wild animals, live band, tons of food.

Poor Owen didn't understand then, what all the fuss was about. Who all these people were who certainly remembered him as the kid who was on ECMO twice. One round of ECMO is an extreme feat of survival, hence the big party. But TWICE? Such a rarity.

The garden courtyard is a lovely venue. I'd spent countless hours there when Owen was inpatient. His first trip outdoors was almost exactly 7 years ago, in that very garden.

I wanted to go. Knowing that I'd be a smooshy weepy mess the whole day. Large sunglasses that cover half my face had been purchased just for the event.

I wanted to see all those important people who played those important roles in Owen's survival. I wanted to hear the surgeon's speech, the big brain on a stick who is humbled by these little warriors.

I wanted to sit and cry and squish my warrior.

Owen was up at 4:45 this morning, sitting at the kitchen table writing about Spiderman.

"What we're doing today?"

"Remember hospital? Uncle Rusty? Owen and Mommy sleep there before? Remember?"

Signing as he wasn't wearing his hearing aids.

"Uh huh."

"Today party at hospital. For kids like you. Sick babies like you. Party outside in garden. You understand?"

"Uh huh."

I convinced him to go back to bed, and he did, and he slept.

He woke up around 7am.

"I not want to go hospital. It too far. Want to stay home."

"Ok. Want beach? Playground? Anything you want, we do."

"Stay home. Not go anywhere."


I felt bad about skipping the reunion. I wanted to mark the occasion. To honor his accomplishment, his survival. To thank once again all those who had a hand in giving me this unique kid, this unique experience.

As the past seven years have whizzed on by, those weeks and months when our lives dangled precariously are getting buried. And I don't want that.

You'd think it would be painful to revisit that time, maybe it is a little, but it is a good pain.

Reliving life in the ICU, when we didn't know hour to hour how long we had with Owen. The day to day caring for a critically ill newborn; appreciating that no news is indeed good news.

Trusting my heart to strangers who knew better how to keep it beating than I did.

The realization that this person is not mine alone, but belonging to something much greater.

These feelings, I strive to preserve. To hold close to the surface. To remind me, center me.

But. That stuff is about me. Not him. And he didn't want to go. So we didn't.

We lounged on the couch watching cartoons. We fetched Bea when I heard her squeal.

He ate a bologna and cheese sandwich for breakfast. And a grilled cheese for lunch. Freeze pops are a new favorite.

He and Bea played in the pool, bikes, scooters, squirt guns, follow the leader, hide and seek, Spiderman, swings.

A fantastic day. Better than most.

Better than anything I could have imagined back in those days when ECMO was busy making it all possible.


  1.'ve probably defined, but can you redefine, for my sake?

    Any kid to go through ICU.....What a little warrior!

  2. Rebecca, I linked the first mention of ECMO. It should explain. I think.

  3. All smooshy. Glad he was smart about the traffic, but also wish you had your reunion.

  4. Amazing. Whether you did it at the hospital or in the backyard, you marked the moment. You honor every one of those doctors, nurses- and even machines which fought hard for your boy- every day by pushing him and helping him be to the best he can be! So, kumbaya and all that shit ;) Because guess what... today he was just being a little boy- and that means all that work worked!!

  5. It's difficult to remember some days that this is their life, and we're just merely players.

    He's so beautiful. Good job :-)

  6. This is another one of those posts that takes my breath and reminds me how to be thankful for normal stuff.

  7. First of all, what Dani said above.

    Secondly, dammit, you made me cry, and I was *positive* I was all cried out this weekend from seeing Toy Story 3 yesterday.

    I think you should print out this post and mail it to the folks at the hospital. It couldn't be a more lovely tribute.

  8. so glad owen made it and that he is THRIVING!!!

    i have a niece that was born prematurely and she had issues. but she is fine now. in fact, she is thriving, too. WHEW.

    and i think it is nice that you let owen decide whether or not you should attend this event. very nice. :)

  9. It's kind of cool he didn't want to go. Not that he didn't want to go but that he could decide for himself that he didn't want to go. Ya know? Very Cool!

  10. Sounds like a perfect way to celebrate his survival story, appreciating him with bologna and cartoons. Smooshy indeed.

  11. sounds like his favorite place is home... not a bad thing at all

  12. Hello, my first visit to your blog and I'm glad I did :) We had a NICU (or newborn ICU) stint as well, we didn't bring our little one home and lost her after a month.

    I know the machine your son was on (our daughter did not go on it), I feel so very humbled and awed by the survival of such unwell tiny bubs. Truly a miracle.

    Your boy is gorgeous.

  13. What an awesome way to honor your little warrior! All children are miracles but others are just a bit more special.

    While the people at the reunion would have loved to see him and his success, they also will appreciate and understand why you are not there.

  14. Know what I think? You go up there some day and just chat w/ those surgeons and docs and nurses. Just a random day. They'll appreciate it - and the one on one they may not have gotten at the reunion.

  15. How amazing. I remember watching the reports about swine flu, and the people who were kept alive on ECMO machines until the flu left their bodies, and just thinking how stupendous it was that this kind of thing is possible.

    I'm glad you had a good day together.

  16. GAWD. I was so out of it when Charlie was on ECMO. I didn't realize how precarious the whole situation was until many weeks after the fact.

  17. "squish my warrior" love that.
    freeze pops rule. yellow and purple are my kid's faves. not sure what that translates to in flavor? glad you had such a good day with your warrior, I think that is the best celebration you could have, just the two of you hanging out having fun. he is so damn cute.

  18. I am a mom to an ECMO/ R-CDH survivor and every word you wrote just resonated with me. I was just at the hospital where my warrior was treated on Monday night, for a check up with her surgeon and to visit with a mom who is just starting the journey. I went to visit her adorable newborn and as I walked in and washed my hands and smelled the smell of the soap, my heart started pounding so hard. And as we walked back, he was in Dakota's old room, and it beat so hard I felt like I was going to pass out for a second. But it felt so good to remember too! It makes me a better person and mom to remember!
    So thanks for sharing,
    Mom to Dakota 12-25-2008
    RCDH survivor

  19. The day was celebrated with bologna and freeze pops and little sisters with glorious names and squirt guns and Spiderman and all the things that make up a little, active boy. I'm sure that is exactly how the medical team who fought so hard would want him to celebrate.

    And now, I must go take kids to school. By the way, my kids are assholes, too.


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