Yesterday, I received a call from our daughter's doctor. He confirmed what the nurse had told me the day before. Lottie's biopsy was abnormal. Abnormal, not a word you want to hear from a doctor. Really not a word most people ever want to hear in conjunction with their health. This is where you come in, Congenital Fiber Type Disproportion. He went on to say that her muscles presented with you. This was already WAY over my head and I knew I had to get through this phone call so I could google stalk you like a crazy new girlfriend.
I asked the doctor the most obvious question, "so what does this mean?" His answer was vague (a common trend amongst pediatric doctors) but he did say that you, CFTD, could be a diagnosis all on your own but his knowledge of our Lottie led him to believe it was your buddy Congenital Muscular Dystrophy. And that this was enough to give a clinical diagnosis. How strange this felt to finally be hearing "we think we have a diagnosis" when we have been searching for 20 long months. The doctor went on to describe that you CMD, are a complicated guy and that you have multiple personalities. And we would have to do further genetic testing to figure out which personality we are dealing with. Some more pleasant I suppose than others.
Frankly up until a few months ago I had never heard of you. I knew your family name, Muscular Dystrophy, but had never heard the word congenital (presenting at birth.) See, my experiences with MD started young but were very limited. We knew two great teenaged brothers at my first church that were wheelchair bound and really cool guys. They had MD. They eventually died in young adulthood from MD related illness. My Dads two uncles started showing signs in late adulthood, and my only memory is of one of them navigating a chairlift that would get him to the second floor of his home. (I thought that was really cool as a kid.) They also had MD and they also died from illnesses related to it. I also have a very pleasant memory of a high schooler my dad taught that was wheelchair bound and she was nice, bubbly, positive and smart. I didn't know then but apparently she had MD.
My feelings on you are complicated and I'm not going to mince words by saying you are what I had intended to welcome into my precious daughter's life. You see Lottie is our first born, the answer to my prayers and dreams. She is beautiful, funny, laid back, loving, silly, stubborn and hard working. And apparently she is also linked with you. A disease that could potentially weaken her muscles and keep her from running and jumping and possibly walking. But until there is a cure she is stuck with you. Luckily at her age it doesn't bother her yet. But it sure bothers her Daddy and I.
We will accept you, because we have to and because we believe we can work around you. We know that you will not control our Lottie and you will not control us! So I'd like to make a deal with you. You give us your most pleasant personality and we will in turn give you ours.
Regards,
Mama Bear
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