if you've read Apple Cheeks McGillicutty at all, you know emma has a standing appointment with a lot of doctors and a lot of therapists. she also goes to Gymboree twice weekly and visits the local children's library for some extra exposure to other kids her age, typical and special needs alike. we have her as engaged as possible to learn as much as possible, while still having a fun childhood.
in short: apple cheeks is a busy gal.
today's schedule included a visit with emma's geneticist.
i can't sing his praises enough. when we left his office, i thanked him and told him he was an angel - because if angels exist, he is most certainly one of them.
he has dedicated his life's gifts and passions to serving children with special needs, from those with autism spectrum disorder to Down syndrome. and, he has done so with excellence, professionalism, and a tenderness with his patients that is rare.
i have not yet met another parent of a child with Down syndrome who does not repeatedly sing his praises and hold a special reverence for his gifts.
so, not surprisingly, when emma saw him today, she tried to leap into his arms. seriously. she's a generous hugger already. and, she smiles and laughs and waves hi and bye to lots of folks, strangers, friends, and family alike. but, it's not common for her to want to leap into the arms of one of her myriad doctors.
but, then again, our geneticist at Children's Naional Hospital isn't a typical doctor- he is exceptional.
so, when we went to see him today, we tried to maximize our time with him. we made mental and literal lists of questions, concerns, doubts, fears. i look to him as a speaker of truths and find him to be one of the few in the medical profession i genuinely trust with my daughter's care.
and, as is his fashion, he asked a bevy of questions, observed, measured, examined, reviewed, and contemplated. he answered our concerns. he explained current research underway for Down syndrome - which is woefully underfunded and a topic for another blog post at another time - and emma's prospects cognitively, physically, socially moving forward based on what he saw at her now 14 months of age.
all the while, emma wanted to crawl into his arms and play.
he listened to her heart. she grabbed his fingers and said HIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIII!
he examined her skull and she tried to flip over to see him.
he looked at the concave nature of her sternum and she giggled.
we, though, weren't feeling the same lightness of being that emma clearly was.
as emma tried to play, the doctor reminded us that some children with Down syndrome regress sometimes, like emma has seemed to be doing recently.
some gain in some places, while falling behind in others.
some wake up at 12 or 13 years of age and have lost substantial amounts of their abilities for an unclear reason.
others are prone to leukemia. others to alzheimers disease. others to autism spectrum disorder.
he noted her need for orthotics onces she's standing more. her need for another hearing test.
he took notes when we said she's not yet crawling on all fours; just commando "crawling" by dragging her legs behind her fast moving little arms and torso. he nodded and said she may just eventually walk and skip the crawling, altogether.
we nodded; it's what we've heard before.
yet, of all of the information the good doctor imparted upon us that has stuck with me the most and that i must hold onto in a safe place in my heart and mind is that emma is doing "great" comparatively. that for all of her challenges and continued medical and physical and cognitive issues -which he reminded us gently that she will always have - she is really doing well compared to many others.
and, he said that we could spend 24 hours a day 7 days a week working with her intensively, yet it wouldn't change some basic things: like the fact that she'll not likely have an IQ above 70- which is considered pretty high functioning, relatively speaking.
as we listened, and took notes, and nodded our heads, and said we understood - but that we still want to give her as many options as possible to develop cognitively, socially, physically - emma smiled, drank a bottle of soy milk, and watched the doctor intently. looking at her out of the corner of my eye as i listened to the doctor, i had this sense that our little e, despite delays or not, understood the doctor's message more readily than did i. that she was sitting in her dada's lap looking ahead, at me, at the doctor, saying yep, that's how it is, so can we smile and have some fun now?
my husband and i walked away from the appointment feeling simultaneously relieved and crestfallen - the doctor reminded us of how well she is doing relatively, but also gently packaged the message that we must carry with us always: there are some things, despite our best intentions or wishes, that will not change.
it is a message i have wrapped in a figurative box which i carry with me everywhere i go. it's stored in my heart and in my head. it crushes me with deep sorrow in some moments and lifts me with hope in others.
that's the thing about truths; rarely are they one-dimensional.
we'll call the good doctor in a month about emma's gross motor regression concerns. we'll have follow-up blood work in a few months. we'll see a developmental pediatrician for good measure. we'll have her hearing checked again. then, back to the geneticist we go in early January.
and, i'm certain the cycle will start back all over again with a new round of questions and concerns, celebratory moments, and moments of clarifying levity. the good doctor will once again package the message kindly and gently that while there are some things we can't change, we must continue to be the best advocates and caretakers of our little apple cheeks that we possibly can, as long as we take it one day at a time.