Not how the picture is supposed to develop

Not how the picture is supposed to develop
The Wings of Hope Angel Garden at Edward Hospital (http://www.edward.org/wingsofhope)

I had just this image in my head: I would finish a race--maybe this time it was a 5K; next time it would be a marathon--and I would walk over to my where my husband was waiting for me and scoop my baby from his arms and give my little boy a kiss.

I've envisioned it so many times, and it has made me so happy, and it was one of the parenthood moments I was most looking forward to.

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But it won't play out, or at least not in the way or as soon as I thought it would. Joe's and my son, Nathan Joseph Grace (Nate the Great) was born Sunday, Aug. 24, at 7:31 p.m., and passed peacefully on Tuesday, Aug. 26, at 2:16 a.m. Nate, we learned shortly after he was born, had what's called a brain arteriovenous malformation (sort of related to an aneurysm). With an AVM, the normal flow of blood from arteries to veins is disrupted. Often, as with heart defects, brain AVMs go undetected until adolescence or later, but Nate's was especially severe and had already caused extensive damage on both sides of his brain and to other organs. It's not a problem that's picked up on regular ultrasounds, though--the kind I'd had throughout my pregnancy that had suggested everything was fine. The fact that my circulatory system was doing some of the heavy lifting for his developing one allowed Nate to be the kicking, active baby I knew.

Joe and I were absolutely blessed to care for him as his mommy and daddy at the hospital for a little while. We talked to him, sang to him, read him stories as we had read to my big belly while I was pregnant. We even had the chance to wash his little head, with the short blond bits of hair that likely would have grown into crazy curls like Mommy's & Daddy's. Joe and I will treasure those memories always.

One day when we were home last week, I opened a box with some of our things from the hospital, and inside was his little blue hospital hat. It still smelled like it did when we kissed his head. Joe and I both lost it. We had had so many visions of parenthood, of beautiful little delights we'd remember forever as well as awful-funny or even miserable moments that we'd laugh at--or that would make us stronger--eventually. It was all going to be so challenging but so incredibly worth it. That's how the pictures of parenthood are supposed to develop.

Instead, yesterday morning, I got up after a solid eight hours' sleep, and the first thing I did was water all of the lovely sympathy flowers we've received. I don't want to be well-rested; I want to be walking around like a zombie, with spit-up on my shoulder. I don't want my house to smell like lilies; I want it to smell like a baby.

Over the weekend, Joe and I walked to the farmers market by ourselves and then stopped for coffee. We sat on a bench and stared at the street, and we hated it because we 're not supposed to be able to sit outside Starbucks for as long as we want.

We were so ready to be in the middle of something that's really tough. But not this something.

Today, in our quiet house, we're taking things day by day--just as, in a sense, we had planned to do as new parents. We hold Nate in our hearts now. We still talk to him, and we still enjoy spending time in his peaceful nursery. He gives us strength, and we are buoyed by the outpouring of  love and prayers and support we've received in the past week from family, friends and even people we haven't met.

One of the beautiful gestures to touch our hearts comes courtesy of my cousin Katie, a NICU nurse in Peoria. She knew how grateful we are for the amazing care Nate (and Joe and I) received at Edward Hospital in Naperville and at Comer Children's in Chicago, and she started a team for the University of Chicago Medicine Comer Children's Hospital RBC Race for the Kids. Contributions from the Race for the Kids, a USATF-certified 5K run and walk taking place Sunday, Oct. 5, fund research by Comer physicians. Last year, the race raised more than $310,000 for Comer Children's. Joe and I are so happy to be part of Team Nate the Great and look forward to running with family and friends in Hyde Park on Oct. 5.

Everything about perfect little Nate--he was such a fighter!--and about how people have responded to Joe and me inspires me to be a more open and loving person. If that sounds corny or cliche, so be it; it's true. I'm grateful for the change that being Nate's mommy brings to my life. The song I sang to Nate in the hospital was Weezer's "El Scorcho" (very slightly edited)--it's one of my favorite songs, and it has been on my "Baby" playlist for the past eight months because I've always especially liked the line, "I think I'd be good for you, and you'd be good for me."

I won't get to hold Nate in my arms on Oct. 5 or after any other race, but he's with me the whole way. My Nate the Great, I used to be running for two, and now I run for you.

• Christine LaFave Grace works as an editor and writer in Chicago.

IF YOU WOULD LIKE TO READ JOE GRACE'S COLUMN ON NATHAN: Strength, courage and love at the end of the sidewalk

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