I watch her run across the yard, her straight, black ponytail bouncing over her self-selected outfit (which today, for once, is rather tame) and from the back she seems like just any other, everyday, six year old girl.
Then something grabs her attention and she turns around. As she glances past me her face breaks into that slightly lopsided grin, her eyes disappear as she smiles behind what would have been “coke bottle bottom glasses” back in the time of my childhood and I see the purple, circular bruises that cover half of her face.
…and suddenly I’m lost in thought…
Our appointment schedule over the past week would suggest something slightly different. In a span of six days we went to Duke Eye Center for a exam with her nationally known pediatric glaucoma specialist, to Chapel Hill Dental School for a specialized consultation and back to Duke to the Department of Dermatology for laser surgery.
Now that she’s been through eight pulse-dye laser treatments, she handles the thought of them well. It would be misleading to say that she doesn’t mind them ~ and she gets really hacked off at having to miss a day with her beloved kindergarten teacher ~ but the promise of a fun surprise just for her and a strawberry banana smoothie on the way home from the procedure help smooth things over. She’s becoming more and more confident immediately following her polka-dot days. A first innocent, “What’s that?” doesn’t bother her at all. She’ll happily reply, “They’re my polka-dots.” And that does it for most people. Just don’t ask her to elaborate ~ she has a stone-cold stare that she’s perfected for when anyone, even adults, asks one too many questions about her bruises.
Stares…her eyes…she’s an old pro at eye exams. While neither of us likes the seemingly endless wait at the Duke Eye Center, (it’s not uncommon for us to be there for over four hours for one appointment) seeing Dr. F is always pleasant. It took three eye surgeries and numerous “tweakings” of her drop regimen, but finally we seem to have stable ground over the port wine stain induced glaucoma that threatened to steal vision in DQ’s right eye. Dr. F still shakes her head in disbelief sometimes and calls DQ her poster child for glaucoma treatment.
The news we received at the dental exam in Chapel Hill left me speechless though. While the primary reason we were referred ~ her dentist wasn’t sure quite how to deal with her port wine stain affected gums ~ turned out to be a non-issue, the rest of the terminology from that visit still has my head spinning. Short version of the story is that her upper jaw has a severe cant ~ hence that sweet, lopsided grin ~ and I was given the name of a cranio-facial team to consult when her orthodontia years come along. Seriously? Jaw surgery?
Sometimes I wonder what else medically will be thrown at her. It often seems like when it comes to all things medical, she got the short end of the stick in our family. Just when we get to the point that one thing has become routine, something else comes along…though of all my kids, she’s the one with the tenacity to get through all the procedures and come out the same bubbly child on the other side.
…back to the world in front of me…
Suddenly whatever had her attention behind me ~ likely a bird in flight ~ disappears from her vision and she turns back, refocused on joining her brothers for swing time on our backyard playground. Just that quick my reflections end.
I see that her focus isn’t on all the time we’ve spent in doctor’s offices and children’s hospitals this past week. She just wants to feel the breeze on her face as she checks to see just how high she can swing, laughing all the while with her siblings. And I realize, we may have many specialist appointments in our history and many, many more to come…
…but she is indeed an everyday, six year old girl.
They are so brave to put up with all of this… All they want to be is a 6 yr old child.
God Bless your sweet girl!
That was beautiful, Kristi!
Just looking through this site. We have a new daughter home from China since July, 2014. She has Klippel Trenaunay Syndrome. Will you be writing more about your experiences?