When my husband and I got married, we made promises to love each other no matter what. Through whatever life threw our way. That’s what you do when you get married, you promise to love the other person no matter what.
You promise to love them in good time and bad times….
In sickness, and in health.
When my husband said his vows, he emphasized that part strongly. In sickness and in health. He knew, even then, that he could, and would, love me through all of my (then largely unknown) medical issues.
Fast forward to now, almost 7 years later, and we now have 2 kids together, with another on the way. Not only has he loved me through sickness, but our children also.
We now know. We now have answers. What we didn’t know then, was that what I have is a severe genetic condition that could (and would) be passed on to our children.
Last week, we got the results from the amniocentesis that we did in June on this baby that I’m pregnant with, and we found out that he also has this genetic disorder. That means that me and my 3 boys all have this horrible thing.
Because of something called “gene anticipation”, this particular genetic disorder (Myofibrillar Myopathy type 6), gets worse and more severe each time it is passed on. Which explains why the kids showed symptoms earlier than I did. Basically, it’s like muscular dystrophy, and it also causes heart failure at a young age.
To be honest, I was completely devastated when I found out. When I got the phone call from the doctor, I was really surprised. I shouldn’t have been, because I knew there was a 50/50 chance either way. But I just never thought it would end up that ALL 3 of them have it.
I almost started crying on the phone, and I had to really focus on collecting myself and catching my breath. It was like I got punched in the stomach.
Life is different now…even though it’s not. I’ll probably never know what it’s like to raise a “normal” baby. I will probably bury my kids in my lifetime.
We will continue to spend an insane amount of hours in therapy every week, only to watch their condition progress and see them decline physically.
This time is different. This time, I’m going into it knowing that I will have a newborn with significant health issues. He will have delays, he will have struggles, and he will have his own unique challenges. Just like his 2 brothers before him.
While all of them continue to thrive cognitively and socially, they will always struggle physically. Just like I always have.
It’s a hard reality to wrap my head around. It breaks my heart that I feel like I did this to them. If it weren’t for me, for MY genetics…they wouldn’t have this. And that hurts.
I shouldn’t be surprised or hurt by this, but I can’t help the fact that I am. I feel guilty and awful that my son will be born with this. It makes me feel like shit.
I’m glad I know. I’m glad I have answers. I just really, REALLY, wish that the answer was something different.
Is this going to make moving out of your parents’ house harder to pull off?
Yes. At this point, we’re considering just adding an extension onto this house to give everyone some more room. It seems like the easiest and cheapest option. But of course, they are being difficult about that. I just need anything to happen at this point.
One would think it would be exhausting even for them to be as difficult as they are.
Oh, it is. They must secretly love me and want me to stay, seeing as how they are making any other option very difficult. Including that one 🤦🏻♀️
Oh gosh, your words got me to tear up. Alana, I’m sure it’s hell to deal with the pain, the feelings, the apprehension. Thank you for sharing this information.
I wish you only Wellness and happiness ❤️
It’s definitely incredibly difficult to deal with. But I don’t have a choice. I just… have to deal with it. Even when it sucks.
Luckily, writing helps me figure it all out. ❤️
Yes it’s true.. sometimes we definitely don’t have many options. Especially in your case. Writing definitely helps sort the mind out and provides clarity in some ways.
Btw Your boys are beautiful and they look so happy.. Alana, looks like you’re doing a great job on the mom front 😊😍
Ow no, I’m so sorry about this! I was also hoping that this time, the 50% chance would make it to your baby not being affected. I can never begin to imagine how you must feel. And while I do feel truly sorry, I know my words are pale in comparison with what you’re going through.
I’m sending you big, careful, hugs and I’m here whenever you’d like to vent. I know just talking about it may sometimes help, even if just a little.
I wish you all the best ♥
Thank you 💙
Yes, talking about it and writing about it helps. There’s not much else I can do, so I appreciate the little bit of an outlet/support that I do have.
I think, under all cir circumstances, you’re doing a fantastic job. Struggles are always there and if you would not struggle with one thing, I believe it would just shift to something else. At least that’s how it seems to me.
I’m sure you got this, especially with good support! 💪🏼 ♥