We knew
I tried to prepare myself. I said it wouldn’t matter, but as tears stream down my face it does matter.
I don’t think you can truly prepare yourself for the words “significant progression.” We knew. We knew that it was highly likely that his cerebellum would continue to shrink. For goodness sake I just wrote about it! Words stuck in my throat while on the phone with his neurologist. I tried to hold back the tears but couldn’t help it. His neurologist just listened as I apologized and she said “sometimes you can’t prepare for certain things.” I cried. I couldn’t talk to her. I apologized again and tried to compose myself.
She said things like “markedly different” and “noticeable change.” It’s extremely hard to hear this. It sucks. It sucks to know that this rapid progression will likely continue until there is nothing left, just as we knew. Even though we’ve been told this it never felt real until now. It’s real. Our baby’s “little brain” is most definitely shrinking, and according to his neurologist, rapidly. This is where I want to insert a bunch of profanities but I’ll refrain.
“He’s going to achieve all that he can because of what you do.” This is what she said to me as we ended our conversation. She’s right. Her scans can tell us what is going on inside but I’ll focus on what he’s showing me outside. As I look at him he’s sticking out his tongue and making raspberries with his sweet lips. He’s rolling over and grabbing his toys. He wants to sit up and play, he can even prop sit for a few seconds alone! He loves to interact and charm the pants off of others. He reaches up, touches my cheek and grins. Significant progress. That’s what we’ll focus on. Not “significant progression.”
I can’t lie though. It still sucks. Really really bad.
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3 Comments
Pastor Linda
Dear Friend,
You write with such open honesty. Know that my prayers surround you and your family— and especially Christopher. He really is a charmer!
Prayers for continued hope living one day at a time…
Prayers for peace- Prayers for comfort- Prayers…
~Pastor Linda
jody
There are no words. The love of a mother surpasses all imaginable strength, hope, sacrifice and courage. You have a special gift in your care. Keep doing what you have been doing, and the rest of us will lift you up in prayer to places only God can keep you. Love and peace to you.
Kerri
Cry- let it out but trust your gut feeling. We were told that our daughter Zoe wouldnt acheive much and not to expect much. She has cdg type 1a, a small cerebellum ,retinitis pigmentosa and the list goes on. A doctors general rule of thumb if a child is not sitting independantly by age 2-3 that they mostly likely wont walk. My daughter had a processing delay of upto 15 seconds ( documented) and wasn’t meeting the milestones. Her speech hard to understand.
Love, therapy and hard work has helped us. Zoe gave a speech last year to graduating speech therapists about therapies at La Trobe Uni , 15 minutes long and did this from memory- not reading. She is 17 and doing a modified yr 11 at mainstream – began walking with crutches in Yr 8. Take on board what you can and use what is most useful . Everyone has an opinion which is exactly that- if your seeing improvements – focus on that.
I trully wish you all the best