The children have grown, as all children do. Ainsley is taller and lanky (a trait not inherited from my side of the family I can assure you), and now in the 6th grade(!). She has become quite a talented soccer player and travels often for the love of her sport. Jack is also taller now, not quite as lanky as his sister, and is plodding through 2nd grade like a trooper.
Their father and I divorced. The children and I moved back to my hometown three years ago, and it seems everyone has adjusted quite nicely. I happily remarried a few months ago. Jeff, a man I adore and have known for years, is wonderful to us and for us. We live not too far from my parents, which has been of particular good fortune since my Mother's health has taken a dramatic turn, the outcome of which remains to be seen. I am happy to be close and offer our support when needed.
Jack's over all health has had no remarkable changes. He is now on medication for ADHD, wears glasses (very hipster!) and participates in the special education program through his school.
To this point, this update has been a mediocre rambling, like something you expect to receive in the yearly Christmas card from a relative you never see or speak to. And if that's all you were looking for in this update, you can stop reading now. The rest is just my own thoughts about all things Jack.
There is far more information regarding neuronal migration disorders available now than there was just a mere 5 years ago. And while that is astounding, there is still very little known about the long term prognosis, and even less known about male children who have multiple neuronal migration disorders with no Filamin A mutation. We basically don't know any more about how it is going to affect Jack's quality of life then we knew back then. It is nearly impossible to comprehend the vast dissimilarity of how swiftly information surfaces versus how slowly research actually progresses. The basic facts remain the same: diminished IQ with significantly delayed learning, motor planning difficulties, high risk of developing seizures during the second decade of life.....etc., etc., etc.
So I have to ask myself, if the facts haven't changed, why do I find myself struggling with his diagnosis NOW?
When he was first diagnosed with his "disease", for lack of a better term, I didn't know how to react. Was I to be relieved that we finally had a name and a very vague sketch of things to come? Was I to be intimidated by the massive names (periventricular nodular heterotopia and cerebellar hypoplasia) and the minuteness of the information available about them? Was I to be indifferent, knowing that there is a stark contrast between a diagnosis and a cure? Looking back now, it seems I chose door #3, shaken not stirred, with a splash of denial.
I understood the diagnosis, as well as a non-medical professional could, but not the implications that went along with it. Now, as we navigate the realm of special education, attempt to plan Jack's school career, and watch his social struggles emerge, it is painfully more real to me. He is not normal. He is wired very differently than the average person. He will never live independently, likely never drive a car, and never be capable of managing his own finances. (Hmmm. Come to think of it, neither does a significant portion of the "adult" population of this country.....) I have said all of these things a thousand times, but saying it and accepting it are not the same. Over the past few weeks, I've struggled with that acceptance and it's very likely that I will struggle with it for years to come. And that's ok. I am amazingly fortunate to have something, and someone to struggle for.
Be well. Be kind. Be love.
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