So I’m sitting here waiting for a representative from the DARS Division of Blind Services (DBS) to arrive for our scheduled assessment. I received the call a few weeks ago and the representative briefly told me about all of the wonderful services and programs the DBS offers. There were many that I thought would be very beneficial for our family. She performed a quick “screening” to see if we would be eligible for services, but it was a mere formality, “With that CVI diagnosis, you’re sure to qualify.” I was excited to schedule the appointment and couldn’t wait to learn more.
But after I hung up the phone, a strange feeling swept over me. On the one hand, I was excited about the additional services, but on the other I realized that my child was now classified as “so disabled” that he qualified for all of these extra services. “With that CVI diagnosis, you’re sure to qualify.”
Not too long before this call, I received a notice that Braxton had reached the top of waiting list for the Deafblind with Multiple Disabilities (DBMD) Medicaid Waiver. If eligible for this waiver, Braxton could qualify for Medicaid on his own without taking in to account his parent’s income, which could disqualify him from receiving services. Again, excitement for the new services and opportunities, but sadness because of the “classification.”
I see a tenacious young boy learning to exercise his independence and autonomy. A little boy who defies me when I tell him not to chew on his sister’s shoe by clamping down tighter or throwing the shoe across the room. Or even more developmentally appropriate, when he refuses to put it down until I walk up to him and he sets it down and tries to act like he never had it in the first place.
I see wide eyes and a bright smile that fill my heart with so much joy I could burst.
I see a wobbly walking toddler through tears of joy because ‘they’ told me he might not ever walk.
I see a child full of love who walks as fast as he can just to get a hug. Little hands that pull me back and squeeze ever so tightly because you can’t just get one hug.
I see wonderful every time I look at him, but every once in a while, that ugly feeling washes over me when his disability becomes real and unavoidable due to our circumstances.
When I watch him wobble across the room while a friend’s 2-year-old is running around, jumping on furniture, “are you SURE you want a ‘normal’ 3-year-old?” runs through my head.
When I finally gave in and asked our pediatrician to fill out the forms for a handicap placard; And not the temporary red one, the permanent blue one.
All the way back to the NICU when the doctor told us he would need a feeding tube and he might not ever eat on his own. Agreeing to the tube meant he was going to be different for the rest of his life. The tube meant he would not ever be ‘normal.’ What would people say? Would he ever be able to do things like a ‘regular’ kid?
Answering developmental questionnaires and marking “no” for all the things he can’t do.
When sitting in his first school ARD and there was no “fight” for services, because there was no denying that he needed them. Only, I didn’t recognize there was no fight until my ‘typical’ daughter needed help and it didn’t go near as smoothly because her disability didn’t affect her enough.
The day I finally parked in a handicap accessible space only to fear that someone would question me and therefore make me tell them, show them, “Look, look how disabled he is! The placard is for him.”
Perhaps it’s not that his disability is any more real in these moments than it is at any given time, but more so the fact that I have to accept it and recognize the ways in which it permeates our lives that hurts me so.
In three years, I feel like we have all come so far and we are in a good place, a place of acceptance and adjusted to what is ‘normal’ for us, so when these feelings intrude, it always surprises me. But, I recognize that grief is cyclical in nature. We are constantly moving through the stages of grief, sometimes staying in one stage for very long periods of times, which lulls us into a false sense of security until something jolts us back in to active grief.
I also realize that we are still very early in our journey and this feeling is only going to continue as the years pass. With every birthday, every milestone, every IEP Meeting, as I watch him walk next to his peers, as I dream about hearing his voice and awake only to find that he still has no words for me.
But then, there is that smile; the smile that brings me up from the depths of my sadness and self-pity.
That sweet, charismatic, wonderful smile as he turns his head like a bird to make sure I’m looking right in his eyes as I lay in bed and then he comes in for a hug and lays his head so sweetly on my shoulder and squeezes me tight. It is in those moments that the labels and services and countless appointments no longer matter. When wonderful returns and if only for a moment, disability disappears.
And with that there is a knock at the door. I squeeze my boy one more time and take a deep breath.