amylenore

It All Makes Sense Now

I have 3 kids. They are all so different – but also the same. My oldest Caitlin was a go-getter from the very beginning and smart as a whip. When she was two she had a meltdown because she could not write like Mommy. She loved kindergarten, except the homework they gave her was “too easy”. She learned quickly and readily. My son Asa talked back before he could even talk. He had a cheesy sense of humor, which helped him a lot in school, because learning was much more difficult for him. The teachers liked him though, so he was able to get away with some of his behavior. My son Jake was an early walker and loved to be outdoors. He could make up lots of stories in his head and tell me all about the things he would invent. School for him was a nightmare.

We knew that Asa had some learning disabilities early on – and he had to do 2nd grade over again because his reading was not up to par. His brain has always run a little differently than other peoples. Multi-step directions were difficult. He got in trouble a lot as he grew older.

As soon as Jake learned to walk, he toddled over and kicked the dog. He would laugh when someone was hurt or when he was getting in trouble. He was kicked out of every daycare he went to.

Caitlin didn’t have all the bumps that the boys had in school. She did have a lazy eye which she had surgery for, but it still would laze over when she was tired. And she was plagued by stomach issues over the years.

One thing they all said they had was an issue with their hands locking up – like their hands would get stuck in a grip and they would have to open it up using their other hand. I was a stressed out single Mom when I heard this and figured it was just some oddity – or one had the issue and the other ones had to say they also had it because they were all pretty competitive.

Fast forward MANY MANY YEARS and MANY MANY other issues with behavior and odd medical things. My ex-husband had his hand lock up. And he couldn’t get it unlocked. He had heart problems, and leg problems, and weakness, and suddenly his hand locked up and even with physical therapy, it didn’t help. After seeing a specialist and having a blood test, it was determined that he had a disease called Myotonic Dystrophy Type 1. It affects your muscles – legs, arms, face, heart, lungs, intestinal, etc. It can affect people’s behavior and cognitive ability. And one main symptom is hands locking up. And yep – it’s hereditary. And all three of my kids have it.

We had never heard of it before. It’s a form of Muscular Dystrophy. I have spent tons of time researching and learning everything I can about it so I can help my kids. It is a muscle wasting disease that is progressive and there is no cure. My kids have gone to neurologists, cardiologists, pulmonologists, ophthalmologists (oh yeah, it can also cause cataracts), and swallowing specialists (because you have muscles in your throat and if they don’t work right, you can choke on food).

For years, we didn’t know what was wrong with my boys. Asa struggles with regular life stuff, like keeping a job, managing money, knowing how to take care of himself. Jake has had so many behavioral issues, autistic-like mannerisms and no answers from all the doctors and specialists we went to, so we said he had “Jake Syndrome”. My daughter Caitlin has had severe stomach issues that were unexplained. Her son (my grandson) Tyler is nonverbal and has had leg problems (the disease gets worse every generation).

Finding out about Myotonic Dystrophy makes everything make sense. It explains why Asa could never blow out birthday candles or blow a whistle. It explains why Caitlin would suddenly vomit and have dry heaves for an hour. It explains why Jake’s heart rate is 40 and irregular. And it explains why Tyler walked on his tippy toes until he had surgery to correct it. It explains it all. And it sucks.

Thankfully though, there is the internet and I am able to get lots of information about the disease, so I know what things to look for, what doctors to have them go to, what procedures or equipment might help. I am thankful for the diagnosis so that there is a name to what is going on – and we can be better prepared as this disease continues to progress.

Right now, they are all pretty “healthy” which is a tremendous blessing. They all can still get around on their own and don’t have any significant weaknesses. My grandson Tyler is so active he makes me tired just watching him! So we will enjoy these times and try not to think of what is to come. And as things come along, we will deal with them. Having information makes a huge difference in how we manage. I am thankful for knowing because it brings clarity. And it makes it all make sense.

This entry was published on December 9, 2020 at 5:44 am. It’s filed under Uncategorized and tagged , , , , . Bookmark the permalink. Follow any comments here with the RSS feed for this post.

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