One Molecule At A Time

Nine years ago today, after 94 days in the NICU, we finally brought our baby boy home.

I didn't know then that Elias would never catch up, the myth of the former micro-preemie turned all-star athlete carried me through more sleepless nights than I can count. As I sat up with a mechanical pump attached to my breasts at 3:00 a.m., I imagined Elias running across a lined field.

I always assumed I'd have a healthy child. 

With Nick and I as genetic donors, I imagined a soccer-playing, kayaking adventurer with a small but stocky build.

I never could have predicted Elias.

Even after more than three months in the hospital, multiple surgeries, including placing a reservoir in Elias's brain, I still believed he would overcome it all. He would be the miracle child, not just for living, but for surpassing every expectation.

I ate hope for breakfast, longing for lunch, and dreams for dinner.

This is how I survived Elias's infant-hood.

I couldn't absorb all the dire predictions. The possible vision impairment, cerebral palsy and autism that all turned into reality.

Nine years ago today, I just wanted to see my first child under natural light, outside of the alarm-soaked windowless NICU. I wanted to hold my baby in my arms in my own bed for the first time. I wanted to believe that now that we were finally out of the hospital everything was going to be ok.

And if I could whisper in the ear of my sleeping self nine-years-ago today I'd say, "Keep believing."

I wouldn't mention a word about Elias's current aggression, his incontinence, his lack of balance. Not a single word.

This journey for me has been all about learning from what is right before me. And taking in what I see one molecule at a time.

No more.

If the doctors labeled Elias with all his current diagnoses on discharge day, I would have fallen into a desperate hole and failed to bond with my son.

I know this.

I am no angel chosen by God to parent a special needs child. I did not arrive at parenthood's door with a wealth of compassion and knowledge about children with challenges. If anything, I held them in an uninformed disregard.

A former college athlete who moved to Alaska for the physical challenges of the outdoors, the last thing I thought about was the need for accessible playgrounds or to banish the casual use of the word retard as a put-down.

Elias made me the person I am today. Every day he makes me stronger. Every single fucking day.

And yes, it seems like we've had more f-word days than good ones lately but today was a good day.

And I'll take it.

Elias spent the weekend with his grandparents in Palmer and I think he needs time away from his three-year-old sister who has already surpassed him in every measurable arena. I think the root of his aggression is frustration but he doesn't have the emotional vocabulary to say, "Its hard having so many challenges."

He sees other kids running and somewhere deep down he knows he's different. So he pulls Olives hair or scratches Nick across the face leaving blood lines so we'll remember.

This is our baby boy at nine.

This morning, I participated in a nine-mile bike race with 700 other women while Elias went to church with his Grandma and Pop. "Did we go to church to celebrate my homecoming?" he asked tonight after I told him he got to stay up extra late because it was his home-coming day.

"Yep, everyone there was celebrating you." My miracle baby. Not for surpassing but for being.

After a mixture of snow and rain all day Saturday, the sun came out today, just in time, and we spent the afternoon outside, biking and playing street hockey with the neighbors.

Elias may not be able to hit the puck too well but he wants to play. And he's encouraged by all the grown-ups in the neighborhood.

He's loved by so many and its not a pity love. Its not because of his challenges, but because of the way he freezes the world for a moment and makes you look.

He takes you out of the quest for the finish line and forces you to notice the way the gravel shimmers in the light, just so.

Comments

[Mom and Dad]

Beautiful! You write so well. Can't wait to see you all!

[danielle in zurich]

Dear Christy,

Thank you.

I am you - pre Elias - and without the Elias wake-up call. Not always, not every day--I do manage to have my beauty-of-the-here-and-now moments but boy, as an Ivy grad, trilingual blablabla mother of three neurotypical geniuses (ha, ha) I sometimes find myself staring at that finish line. The one festooned with degrees and success and books and perfection. Staring so hard at that finish line that I am blinding myself and I worry those around me.

Just so you know...I quote YOU to myself when I wake up in the night anxious about some stupid race that is probably not worth running--yeah, I quote you to remind myself of what matters.

And for the record, I do not tell myself, danielle, don't sweat it, look at Christy, it could be worse. No. Because of what you write I tell myself, Danielle don't sweat this crap and it will be better. Life will be better if you slow down and love in the present tense.

It usually works.

So thank you.
Hug from Danielle in Zurich

[Tina Toran, Grant Coordinator, Coalition for Children]

beautifully written.
still following elias,
tina

[fleming]

He is beautiful, you are beautiful and the life you are making together...scratches and all.

[Sara Sutton Fell]

Christy, you are so damn talented, and amazing. I appreciate and value the reminders of how important it is to just stop, be, look and appreciate. It makes me think of a book one of my yoga teachers mentioned the other day - On Looking, about how the author walked around the block(s) near her house with different "experts"... each had very different views of what they say, what happened, the beauty, etc. I haven't read it yet, but it's on my iPad, so hopefully soon. :-) Wishing you all the best, and thank you, as always, for your posts.

[Christy]

Sara, thank you! And that book sounds interesting and reminds me of how Nick and i will take walks around our neighborhood in the summer and he notices all the detail work on the houses but I only notice the gardens and landscaping so we can never discuss what we saw afterwards:)

Danielle, I love what you wrote thank you! I'm honored that you quote me on those anxious nights:)

Thank you Mom, Tina, and Fleming for always following and cheering me along:)

[Kate]

So beautifully and powerfully written, as always. And I will keep coming back whether it's an f day or a good day.