50-50: Playing Russian Roulette with my Hereditary Disorder

It’s common for little girls to dream about their wedding day, about having a family and taking care of babies. I know I dreamed of those things, before experience opened up my eyes to my would-be reality.

When I turned 16, a girl from my school got pregnant. She was also 16. I remember being a little jealous, because I wasn’t going to get pregnant. By then, the fanciful day dream I had as a child of holding my own baby was gone. In its place was the hard truth: any children I biologically gave birth to would have a 50-50% change of inheriting my genetic bone disorder, Hereditary Mulitple Osteochondromas.

I was in and out of hospitals, having surgeries to remove the bone growths and try and counteract damage. Surgeries were exhausting, and I had at least one a year for many tiring years. The recovery was never fun, and each surgery left scars – both physically and emotionally.

Surgeries aside, there was the day to day pains, the severe loss of self-esteem when I became aware of the fact that my body was different. I felt repulsed by it. I wore layers even in the summer, making sure that my bone growths and scars stayed hidden from my peers.

“You don’t have to worry about me. I am going to adopt. I wouldn’t be able to forgive myself if my baby inherited this,” I remember stating to my mother when the conversation came up. I truly felt that way…I truly felt as if I wouldn’t be able to forgive myself for playing Russian Roulette with those numbers. I couldn’t imagine what I would do if my child inherited my HMO, so my decision was not to have my own biological ones.

When I was 18 years old, I met my now – husband, Matt. I gained confidence and self-esteem, simply from seeing myself how he saw me. We were focused on each other, on having fun and not taking life seriously. Then I found out I was pregnant.

I was terrified and excited at the same time. I honestly didn’t think about my hereditary disorder…not even when I was in genetics counseling having all kinds of blood tests done. I told myself it would be fine. I rolled the dice with genetics, hoping for them to land in my favour. I was excited to have a baby with the man I loved, to feel a whole other being grow within my womb. It was an incredible feeling.

Each day, I prayed that the baby would be healthy, and that he wouldn’t inherit my HMO. But he did, and our next child too. My eldest son is affected more by it, but thankfully neither of them have needed surgeries just yet.

There are days when it is blatantly obvious that I have not forgiven myself, and I may not ever truly get to that place. I dance between feeling incredibly guilty about it, and wanting to punch myself in the teeth for feeling guilty. Our sons are beautiful souls, they are remarkable on the inside AND the out. I can’t imagine my life without them.

I consider myself a better person because of my struggles with HMO and chronic pain. I am incredibly emphatic towards those around me. And it’s not the worst thing out there…I am thankful every day that I at least KNOW this disorder, and it isn’t terminal.

Still, I would be lying if I said that their future struggles didn’t terrify me. I know what it’s like, after all I LIVE this. The list of things I cannot do seems overwhelmingly long. I cannot stand for long periods of time, I can not walk far. I’m never without pain and I’ve had to let go of dreams because I knew my limitations would get in the way. For so long, I felt ashamed and unworthy, because I couldn’t work regular jobs like “everyone else”. I worry every single day about their futures and their abilities to work and provide for themselves.

I also know what it feels like to feel hideously different from peers, and to be bullied. I still remember what it felt like to be called “Disease Girl” and “Crutch Girl” and “Crippled”. Kids are cruel when they don’t understand things, and I worry about my kids feeling the same way I felt. Devastated. Isolated. Less than.

I don’t want my boys to ever experience that kind of despair…but hopefully, that will give us all an advantage…my knowledge and understanding. Hopefully, neither of my boys will feel as isolated as I did…because they’ll have each other, and me.

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About J.C. Hannigan

25. Mother. Wife. Lover of words. Weaver of stories. My first book, Collide, is available in e-book for Amazon Kindle and Kobo.
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5 Responses to 50-50: Playing Russian Roulette with my Hereditary Disorder

  1. You are an incredible person for having endured all that as a child. My roommate was born with her toes pointed inward and went through a lot of surgeries and stuff. But I’m so glad she was born. My husband, as well, has some disorders and injuries that led to him having surgeries all throughout his childhood, along with struggles with everything else he went through. But I’m SOOOOO glad he was born. You have a purpose and God loves you. 🙂

  2. bendy says:

    Thank you for writing this.
    I have a heritable connective tissue disorder and had a doctor tell me I should never have children (why? Is it so horrible to be me? should I not exist?). I am currently pregnant with my first child. I waited for over a year to go to see a geneticist who gave me the go-ahead.
    Yes, I have that 50% chance my child will have it too – they may never be an athlete and they may struggle with chronic pain and various mild-moderate health issues – but I still love being alive and I hope they will too. Also, I didn’t get a diagnosis until I was an adult. I was instead diagnosed with a million different things all through childhood and generally labeled the sick one, the gimp without really knowing why. I feel it is an advantage that if my child does have it, I will recognize it right away and start a child-sized drawer full of braces and splints to match my own.

    • From the moment I got that positive pregnancy test, I told myself that it didn’t matter. Inheriting this disorder would not make my child any less…and it’s true. We are lucky that our disorders are not deadly. We can help our children thrive and grow because we know what it takes.

      Thank you for your comment and congratulations on your pregnancy!

  3. tierney says:

    I live every day in pain and most of my free time is spent at the doctors and in therapies but I haven’t thought for a second that kids aren’t in my future. Battles like these make you a stronger person and yes, while my condition is hereditary, it’s nothing that would make me not want to be alive and for that alone, I have no reason brining kids into this world- they may just have an added struggle. Hopefully I’ve done enough research and therapies by then to figure out the best route and can alleviate some of the stress for them.

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