The hardest thing

Watching someone you love deteriorate is the hardest thing in the world sometimes. It’s hard watching someone you care about more then anything in the world loose their ability to do every day things that we all take for granted. Little by little you watch them struggle with the things that other people do without a thought.

It wont stop there. I know that. I understand he will progressively get worse. His dad is not even sixty and can not walk without a walker and can not go far. Cory’s hands are only mildly affected right now. I kills me to think that he may not be able to hold our children. It’s one of the reasons I don’t want to wait any longer. I don’t want him to miss out. I don’t want them to miss out on much, they will already miss out on some things but they will have their dad and that’s what matters.

But thinking of that then makes me wonder will we even have kids? One year this month since I stopped taking the pill. Is it ever going to happen. I know that a year is not long, but when you are running against a very real clock, a year just seems like forever. Each time that we don’t conceive is another month closer to him possible not being to pick up and hold our child without help or one month closer to him not being able to do things with them that I know will drive him nuts.

I have a cousin who has MS. He was 19 when he was diagnosed. He got married a bit younger then us and they had two kids. Now their dad is in a nursing home and can not walk, has a hard time talking and can not do very much with them. It took a horrible toll on his relationship with his wife, she had a hard time taking care of him.

Eventually she just couldn’t do it with two small kids. They divorced but she never left his life, and she makes sure the kids see him. She just couldn’t hand it. My aunt and uncle tried to take care of him after that but with where they were living, the money they made and the care he need they could not to it either and he ended up in a nursing home.

I understand it will be different with Cory and I. I know his CMT will affect him and us in various ways. I know it will get tougher but we have support. We have both his parents and mine. It’s so hard though, he has been in pain for so long I’m not sure he remembers a time without. I’m not sure he even really ever had a time without pain.

He wants kids, I want kids, what if I can’t give them to him?

It tears me apart. Why does it have to be so hard?

3 Comment

  1. How sad to read this. When I read about CMT it didn’t seem like a progressive disease like many other neurological diseases, is it?
    Wishing you the best of luck with trying to have children.

    1. Yeah, CMT is progressive. There is different types too. Cory’s is the worst and progresses the fastest. He has already had one foot reconstructed when he was younger and he is waiting for the second operation which should hopefully be in the next year. He was referred to a surgeon who confirmed he needs his other foot done, but wanted to clear him of other issues first. So he had to wait for those referrals and now has to be referred back to the surgeon again for him to book the operation. It takes forever.

      1. I’m so sorry to hear that!! I googled CMT a bit more and found info on the Hereditary neuropathy foundation website. When I think of it, I think we had a patient once with CMT..when I worked with respiratory medicine. That was back in 2007 or something like that.

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