She Walks A Different Road

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“Your daughter’s head is measuring a little small.” The pediatrician leaned against the counter as she said the words.

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,

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4 thoughts on “She Walks A Different Road

  1. Hello friend – I’ve been rather disconnected myself but you are never far from my thoughts and our families prayers. Reading this makes me think of Caleb. Though his challenges are so different I know, and less visible to the people around us (which makes it especially painful, when people say “I’ve never seen him meltdown” or “he seems so delightful”…as if he’s just out of control with me because somehow its all my fault)…its still terrible difficult to have a child that doesn’t fit any mold, that doesn’t do “normal” in most anything. My hearts been so, so weary of the road these past couple months with him. But I’ve come to two big truths that I cling to:
    1 – Caleb’s presence in our family provides each one of us a unique opportunity to learn a special kind of love, one that is forged in fire and will stand up to the barrage that life sometimes is.
    2 – At first glance, it might seem like Caleb would thrive as an only child where no siblings could rub him wrong (at least at home)….I’ve come to believe though, that this family he was born into is the one, the only, the perfect one for him (just as Sage is for your family) and he will learn things here about life he could not have learned growing up alone (because without the build in friendship of siblings, his natural bent is certainly not to relate).

    Much love to you friend,

  2. Beth, I’ve lived with Cerebral Palsy for 31 years now and I understand the myriad of thoughts and emotions you’re sorting through perfectly. They are ALL valid, but please believe me, Sage’s life will not be as bleak as it may seem, but how far she’ll go depends largely on the way you approach the challenges before you now. I’m praying for you and your whole family. There are so many stories I hope to share with you in the very near future.

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