Worry

Worry is another emotion that I'm struggling to deal with right now. Well I can't really say “right now” because I've been what my family called a "worrywart" all of my life, but I don't think that term was really correct because that actually means "a person that worries unduly" and all my worries were pretty justified (at least in my mind) especially now.

I mean my mom is almost 80 and not in good health, my husband had two strokes last year, my oldest daughter moved out earlier this year, and then Rach's seizure control went downhill. 

That's a lot to deal with worry-wise but I've really been making an effort to do what I can and then accept the things I can't change, because in the last few years I've realized that I'm making myself ill by worrying too much. 

The thing with Rach and her epilepsy is that I can't stop worrying because it's just always right there, especially after the doctor tried to switch the medication and it all went downhill. She still hasn't had a seizure free day since June and even though she's feeling better, she's still not 100% Rach yet.

Another reason I want to talk about this is because Rach herself has come to me with some things that have been bothering her of late and it breaks my heart to hear her say the very things that I'm worried about. This is another reason I wanted to do this blog, because I know we can't be the only family that has these worries and I think they need to be talked about.

Worry #1 - SUDEP/Death

Even typing that makes me want to cry. For those of you that don't know, SUDEP is when a person with epilepsy dies and that person was otherwise healthy and no other cause of death is found during the autopsy.

When Rach was first diagnosed, back in 2010, I didn't know anything about SUDEP and at that time my main fear was that the medicine might cause her to die. Because Depakote does have a Black Box warning on it. 

There’s always a fear that the very medicine you're giving your child to stop the seizures might also damage their body to the point of death. Anyways the doctor didn't bring up SUDEP but he did give the Epilepsy Foundation website, where I soon learned about it. 

According to the CDC there are about 3,000 SUDEP deaths a year, but that number may be off because sometimes it isn't listed on the death certificates. 

This is one of those worries I can't do much about because the only way to prevent SUDEP is to have good seizure control but since the medicine changed, seizure control hasn't been good at all.

In 2019, when Cameron Boyce died from SUDEP, it was the first time I think Rach had ever heard of anyone dying from epilepsy and I could tell it bothered her but she didn't talk about it then. 

This summer, when the doctor tried to change her medication, was the first time she spoke to me about her fear of death. She said something along the lines of, “I'm scared either the medication or the seizures are going to kill me.” It broke my heart to hear my 16 year old daughter talk about this but it hurt even more because it's something I had been worried about.

Death is something we all worry about at some point in time and it's something we know will happen to all of us, but no parent wants to think about having to deal with the death of their child. My heart goes out to any parent that has had to deal with the loss of a child, no matter what age that child was. 

I know in my heart it doesn't do us any good to worry about dying because all the worry in the world won't stop it from happening, but it's a hard thought to push to the side too.

Worry #2 - The Future

Both Rach and I are worried about several things with her future but mainly it's these two things.

Will her seizures get worse?

We are trying to have faith that they won't and we are even hoping that we will find something to help. Even though the doctor has given up, we haven't and hopefully we will find a doctor that cares more than this one does. 

Right now we are researching some things we can do, like more changes to her diet, chiropractic care, and a few other alternative care options.

If her seizures don't get worse but we're still unable to get her seizure free, then the other worry is this…

How will she provide for herself as an adult?

That question may seem odd to some people but for us it is a concern for many reasons.

First of all, if Rach is still having seizures she can't drive and we live over 20 minutes from our town which isn't very large. Not only does our town not have a lot to offer job-wise but it also doesn't have reliable transportation for a person like Rach that can't drive. 

Next is the fact that the more seizures that Rach has, the harder it's getting for her to focus and she's also very tired. I've talked about this in another post and some of it is just a side effect of the medicine, but all these seizures the last few months have just taken it out of her. 

She even said the other day, “If I had a job right now I would get fired or have to quit because I just can't function some days.”

Hopefully we will find something that will help her seizure control improve and even see her become seizure free again and then some of these worries will be settled. 

I hope I didn't ramble too much with this post but it wasn't an easy one for me to write at all. If you are reading this and have worries or fears you would like to talk about then please leave a comment below. I really would love to hear from you!

As always, thanks for reading!