My day began way too early. 8:00 a.m. doctor’s appointment in Charlottesville (1 hour from where we live) means we leave at 6:30 a.m. after getting home from a great weekend away celebrating Christmas with my family. We are tired upon more tired. Fortunately, Todd is a great life teammate and jumped right in to wake the kids up and get them dressed to go.
The drive was quiet – mostly because the kids were so so sleepy and not sure where they were. Quentin is always my co-pilot in the truck when I have all four with me. He definitely enjoys assisting in the wayfinding and starting the alphabet game for the bazillionth time. I think I got stuck on “N,” or got distracted with driving.
On our way, I asked Quentin if he’s ever seen the sun rise. He said no. It quickly dawned on me (yes, pun intended) that this was a memorable experience unfolding right before me. I snapped this pic (I know, I know, bad me) to keep this memory with him forever. As we talked, he started telling me all sorts of facts and figures about the sun and the earth, and the entire solar system for that matter. Because that’s what every 9 year old boy does at the first time sunrise.
We made great time. 29N is quite quiet that early in the morning. Kluge Children’s Rehabilitation Center (part of the University of Virginia Health System) was our destination. Jasmine (8) and Joel (7) had appointments with Dr. Susan Anderson. Jasmine had pneumonia in October and landed her sweet self into the hospital. Unfortunately, the treatment given at our local hospital plunged her further into illness and we had to step up our game. She ended up in the PICU at UVA Hospital and was seen by a multitude of doctors, nurses, specialists, students, and other random passerby-ers.
There we met Dr. Barrett Barnes, a great doctor who saw Jasmine holistically and how all of her system interrelate. This was so comforting! For once, someone had seen her as the sum of her parts and not just her Down syndrome, alopecia, or other individual health concerns. He recommended that we follow-up with Dr. Anderson to get a full work-up and to find out more information about our little girl (and boy).
Called to make the appointment in mid-October. First available was today, January 2, 2013. Quite a wait, but worth the time in gold. Dr. Anderson was so down-to-earth and loving, with a grandmotherly feel. The kind of woman with years of caretaking and child treating under her belt. Her assessments weren’t clinical and rigid, and I admired her skill of working in elements into general conversation with Jasmine and Joel. We spent nearly 2 hours in direct interaction with her as she ran through a battery of tests. What kind of doctor does this nowadays? I’m happy I brought snacks for the kids, though.
Jasmine and Joel did a wonderful job responding to her, and she remarked at the end of the visit that “they are some of the highest functioning children with Down syndrome she’s ever met.” It was humbling to hear this. Because we were there to request and game plan a full work-up on both the kids. And when I say “full work-up,” I mean cardiologist, audiologist, ophthalmologist, dermatologist, pulmonologist, ENT, and referrals for a sleep study, lab work, and x-rays.
While waiting for x-rays (no wait really – they were expecting us), Elise and Joel took a moment to cook up some food for us.
I left feeling very confident and reassured that we might find some new information about Jasmine and Joel from a medical, biological perspective. To see what really is going on inside their amazing bodies. To learn about how these things might be affecting their daily functioning.
Kind of like a first time sunrise. Seeing the sun break through the clouds from a dark, sleepy morning. Watching the land illuminate and watching as individual trees come into view from their shadows. Sunrise is an emergence and that is what this visit to Kluge was all about. I count it all joy to be their mother, a gift. For “when tests and challenges come at you from all sides…my faith is forced into the open and shows its true colors” (James 1:2-3 MSG).
In other words, faith produces perseverance much like the sunrise and gets stronger with each passing day. Here’s to you and your first time sunrise.
Oh, and I didn’t pass up the opportunity to get my crazy family into this place before heading back to the ‘Burg 🙂