She Walks A Different Road
My two year old son wiggled in my lap as my husband bounced our smiling two month old daughter on his knee. There was an accepted chaos in the room. My son reached for the jar of wooden tongue compressors and cried as I pulled him away.
“What does that mean?” I asked. Two days before I had a terrifyingly vivid dream that something was wrong with my daughter, it was the whole reason I had made this doctors appointment. I inhaled deeply, sealing myself for the worst.
“Well, we don’t know yet. I’d like you to take her to see a neurologist.”
That was the beginning. A few weeks later we would see a neurologist who would tell us our daughter had microcephaly, which just means that her head is measuring abnormally small. He was reassuring, telling us that there are lots of things it could be. He recommended an MRI. We moved states and went to another neurologist. They told us she was showing definite delays and recommended getting her in early intervention. Eventually, my tiny daughter was given an MRI under anesthesia.
At our next appointment we got the official diagnosis: bilateral polymicrogyria. Almost six months had passed since that pediatrician appointment were red flags had first been raised. We had lots of time in-between to let the new information sink in, to adjust to our new reality. And we had a smiling, happy, adorable baby, who would lock eyes with us and let us know it was all going to be ok. It was hard to imagine wheelchairs and speech devises when holding such a tiny buddle of pure joy. The reality of what her diagnoses would mean felt far off and with everything else going on in our lives it was easy to push it off even farther.
Now it has been almost two years since we first heard the term polymicrogyria. But, in the past two months there have been a few things that have happened that have brought me face to face with the long term reality of what it means to have a daughter with severe special needs.
First, my daughter was accepted into Arizona Long Term Care. We are so thankful that Sage was accepted into this program. It will enable us to give her the best possible care and will help so much with therapy and expenses. But, as I looked over the paper work one day and talked to one of our therapists about it, something struck me - they are essentially determining if my daughters disabilities are severe enough to be institutionalized. That’s how severe she has to be to qualify. Well, Sage didn’t just barely qualify, she qualified “with flying colors” so to speak. She fit every criteria. Sure we had been told to down play some of her strengths so that we could get in and I definitely didn’t celebrate all the little victories with the evaluator, but I didn’t lie at all. I told them the things she does and the things she doesn’t do. And we got in. I am so very glad that we did, but it made her diagnosis feel more real for me. It made it all sink in a little more.
My daughter was also put on a feeding tube in the past few months. At the moment she gets all of her calories from formula that goes straight into her tummy through a g-tube. This is also another really great thing. She is finally gaining consistent weight! Meal times are no longer a struggle. She is getting the nutrients and calories that she needs to help her body and brain thrive. And I am so grateful! But, it is a constant reminder every time I look at her that she is not normal. She walks a different road.
This month we also went to see a new neurologist for the first time since we moved to Arizona. It was at this appointment that we first heard the term cerebral palsy applied to our daughter. The doctor explained that cerebral palsy is a broad category term that applies to anyone with brain injury or malformation that effects muscle and motor development. What Sage has is cerebral palsy.
In some ways it’s been nice to have this new term for my daughters disability. When I used to tell people that she has polymicrogyria they would look at me with blank stares as if I was speaking another language. When I use the term cerebral palsy people understand. They have some image or idea in their head of what that means and instead of saying, “what’s that mean?” they tilt their head and smile sympathetically. In some ways, that is nice. It’s nice to not have to explain and to have instant understanding. But, in many ways this new term has been incredibly difficult for me.
For the first time I understand why some people don’t want their child to have a diagnosis. For the first time I understand the argument that a diagnosis puts your child in a box. I feel like Cerebral Palsy puts Sage in a box. When I hear cerebral palsy I don’t think of hope and possibilities and a broad spectrum of ability levels (although I probably should). Instead I think of people I have met who had cerebral palsy. I think of wheel chairs and curled fingers. I think of speaking devices and weak neck muscles. And I feel like crying.
It’s been almost a year and a half since my daughter was diagnosed, but it’s only been this month that I have really begun to feel the weight of her diagnosis. I am only beginning to grieve the dream I had for my daughter that is now lost. I am only beginning to grieve the life that she could have had that is now gone.
In quite moments alone with her I wonder what she would have been like if her brain worked the way it should. When she obstinately demands a certain toy, when I ask her to do something little and she does it, I grieve the brilliant powerful woman that she could have been. I know that she is still brilliant and powerful. I know that there is so much going on inside of her that I only get glimpses of and I know that God will still use her and shape her in amazing ways. But, right now I just have to grieve, because it’s different - different than I wanted or expected, or even than what I originally hoped when she was first diagnosed. She walks a different road.
Rejoicing in the journey, Bethany