My daughter was 3 months old when we adopted her. We knew there was a 50/50 chance that she would have CMT. After 15 families turned her down for adoption, we said yes. At the time my oldest bio son was 2.5 years old. We struggled to get pregnant and persued adoption. After 19 months of waiting for a baby, McKenzie came to us. Ten days after we got her I found out I was pregnant. THey would be ten months apart.
McKenzie was developing ahead of schedule. She was walking on furniture by the time she 6 months old, but only on her toes. I talked to her doctor and she knew of the family history of CMT, she told me it was normal for kids to walk on their toes.
At 12 months old, she was still only walking on furniture and completely on her toes. I went to our local neuromuscular center and had her tested, after my pediatrician still was not concerned about her toe walking and lack of walking on her own. She was tested and they found she was quite far behind on motor skills.
At 18 months she was still not walking on her own. She had taken steps but would not walk. I was angry with her (and feel guilty to this day) and decided that night she was going to walk. I made her take steps over and over and over for an hour until she fell to the floor in tears and exhausted. At this point there was no diagnoses, just a delay but no reason for it. I laid her down for bed and went and cried in my own bed about it for hours. I remember just wanting her to be normal. I wanted my little girl to be a gymnast like I was, or a swimmer. I want her to be normal.
At 26 months we saw a neurologist. She does not have deep tendon reflexes in her arms or legs as well as significant neuropathy. She walks with a slap foot or drag and is very weak. My now 15 month old son can run faster than McKenzie, climb up and down stairs, walk of the curb without falling, and feed himself as well as she can with a spoon. The neurologist diagnosed her with CMT based on clinical findings (and her bio family's history of it).
The general feeling is that although she is making skill progress, her quality is getting worse. I have been unable to find other with kids this young with CMT. I feel an immense amount of anxiety and stress about her future. I read another moms post that said her childs diagnoses feels like it is her (the moms) life sentence. This is EXACTLY how I feel.
I do not want to deal with this. I feel angry and frustrated with my daughter because EVERYTHING is way more work than it should be. I am angry with myself for being angry at her. I do not know how to deal with this, and I don't really want to deal with it. I don't really know what her future will look like. Our neurologist said he hasn't ever had a child this young with CMT as it typically hits around puberty.
My heart hurts for her. Im afraid for her, and feel immense amounts of stress because of her difficulties, and the young ages of my children (4,2 and 1). And her mom had another baby 2 weeks ago that we have been asked to take also. Feeling guilty for not wanting to because its her sibling, but also not feeling like I can take the chance of another child with this disease. What does my future look like?
- UNDERSTANDING CMT
- RESOURCE CENTER
- ABOUT THE CMTA