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.