"Of course she has Down syndrome. Any other immediate health concerns?"
She asked me, eyes twinkling with kindness, pen poised to write down my answer after the words "Down syndrome".
I thought hard and then sheepishly replied, "She's nearsighted....and that's it"
She looked surprised, but wrote down what I said, leaving half of a page dedicated for listing medical needs empty.
I remember the first time I met her. It was 1:00pm on March 12, 2010, the day we finally took our baby home from the hospital after a 5 week NICU stay.
We were led to a conference room where all of Addison's team would meet to discuss all of her health issues (there were many) and schedule her first year of doctor's appointments (so, so many).
She was there, giving me "coupons" to give the pharmacists so that we could get Addison's medications for free. Addison was on 5 (very expensive) daily medications. She kept asking me if I needed anything. If I had any concerns. If I was OK to take my baby home.
The list of Addison's health concerns handed around to the conference table full of strangers who all knew my daughter's name was:
1. Trisomy 21
3. Feeding Difficulty
5. Pulmonary hypertension
6. Conjugated hyperbilirubinemia
8. Transient abnormal myelopoiesis
11. Feeding by G-tube
It was overwhelming, scary and confusing. "I can't do this." I thought.
I nodded blindly towards whoever was talking as the room full of doctors each took a turn to speak. I listened without comprehension to their concerns and where they fit on the list. Nothing positive was spoken- only the many, many things that were wrong. There was no end in sight of the doctor's appointments. When someone mentioned adding in therapy I felt myself pushed over some invisible cliff- falling to who knows where.
After the meeting was over, we were handed the notes that one of the interns took, sent to Addison's room on the PICU floor, and told that we could leave.
The entire distance to the car, people gaped at us like we were stealing a baby because we were running out of the hospital, bells clanging on her stat machine because she couldn't breathe very well in the wagon. It now seems like a distant memory, but at the time I didn't know what normal would ever feel like again. On that day I wasn't sure if I would ever have a child not attached to oxygen with a heart surgery looming. I thought that day was the beginning of the end because none of it made sense to me.
But today? Today the only medical concern I could think to list was "nearsightedness".
As I stared at the social worker who was filling out all the paperwork for our PCA hours reapplication, I saw the last two and a half years very clearly. And I saw- a miracle.
As I did each day, doctor's appointment to appointment; medicine application to g-tube worries; therapy to evaluations, I couldn't see the big picture because I was so busy in the moment.
Today I saw that big picture, noting the swirls and dashes of the bright colors intermingled with the dark foreboding ones. There was action combined with the even more-difficult-to-achieve stillness. There were question marks tangled with exclamation points. Each layer was brushed by tears of sorrow and joy.
When I first met her, I was a new mother, full of doubt and fear. I wasn't sure if I would still be a mother the next day- or hour.
Now as I stared at her fiddling with her straightened blonde hair with one hand, finishing the application with the other, I was overwhelmed in a completely different way. I have two healthy, robust toddlers who fill my house full of mess, laughter, and dirty diapers.
God is good. And I am beyond thankful for the big picture reminder. This morning I was drowning in a new work of art because I couldn't see past the moment. Just because this current painting isn't yet finished doesn't mean that there isn't a bigger picture that I will someday look back and see that today's drama not only fits inside, but is necessary for the beauty of the big picture to have its full effect.