Finding Love and Family With Limb-Girdle Muscular Dystrophy
I’m 32, a wife and a mother who just happens to have limb-girdle muscular dystrophy. I’ve learned from experience that children who learn they have a disease at a young age may worry if they will ever find true love, someone to love them as they are. I want to tell my story so they can have hope that true love does exist. No matter who you are.
My amazing husband Brandon and I have been married for 13 years now, but our story started almost 21 years ago in middle school. He is my best friend, the one person who knows me better than I know myself sometimes. He knows all my faults and imperfections and still loves me. I would be lost in this world without him.
When we’re out, sometimes people see us together and they look confused, perhaps wondering why. I have mixed feelings about this, even though we’ve together for almost 20 years now. On one side, my insecure mind puts her head down and agrees with these complete strangers, who probably know nothing of true love. But the other, more dominant part of my brain says “yes that’s right, he’s mine.”
Don’t get me wrong, we’ve had our ups and downs like any relationship, but we don’t fight like other couples I see. We bicker or pick more than anything. However we’ve had a few more obstacles to overcome than other relationships. Maybe it’s taught us to not take what we have been given for granted. It is a gift when you find someone who truly sees you and also opens themselves up to you, sharing their heart. I always thought I’d be alone when and if I ever grew up. That no one could love a person like me. I felt like they just saw my wheelchair, and wouldn’t take the time to get to know me.
At the age of 11, I met a little girl who quickly became my best friend, and she had the cutest cousin. He and I were both in summer school that year and that’s how we met. He was so sweet and funny and he looked at me when we talked, not at my chair. I never thought he’d like me back. He made me feel normal, whatever that means. Made me try harder. Not that I wasn’t loved by my own family, but this was a different feeling. It was the most amazing and yet scariest feeling all at once.
I gave my heart away when I was 13 years old, to a little boy who is now my loving husband. Throughout that time we have overcome so many things. High school, breakups, doctor’s appointments. I started using a power chair when I was 17-18; that was a big one. Moving in together, getting married. Hearing recommendations not to have children and deciding not to listen — which I think of as being our greatest accomplishment.
Almost as soon as we were married in 2004 we decided we were going to try for a baby. I think we were worried if I didn’t do it early on, maybe I would become too weak and we would miss our opportunity. We knew there are other ways — adoption, having a surrogate — but all I ever wanted since I was a little girl was to be like my mother. At the same time, I was terrified the child could have what I have and that I was being selfish. My life had not been easy — would I want to knowingly do that to my own child? We decided to go ahead and try.
I was pregnant within the month. I loved being pregnant, I truly did. To feel her grow inside of me. Even the morning sickness (more like all day sickness) for five to six months and the kicking was welcomed. When you’re told for so long you won’t be able to do something, it’s that much better. I didn’t have to be on bed rest like they said. I had a C-section and she came out healthy, kicking and screaming (probably the prednisone) 6 pounds, 4 ounces and beautiful. She looks just like her daddy to me, which I personally couldn’t be happier about, but I suppose she is a good mixture of the both of us now.
She was tested at the age of 2 for muscular dystrophy, and nothing. She may be a carrier, but no symptoms at all. She’s a good child, 12 years old now. She’s so smart and pretty, sassy, and extremely caring. She is my answered prayer, a gift from God.
Fyodor Dostoyevsky wrote “The mystery of human existence lies not in just staying alive, but in finding something to live for.”
I’ve found mine and it’s possible for you too. Don’t sell yourself short, disability or not.
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