Motherhood: Disabled

When I was 16, I used to tell my mom I would never have kids. Although I loved them, I couldn’t bear the thought of them inheriting Multiple Hereditary Exostoses. I couldn’t fathom having to watch my child experience the same things I was experiencing. The pain, the surgeries, the social anxiety and awkwardness I felt around my peers for being physically different…the hurtful words the occasional bully would fire my way. The first heartbreak I experienced, where I was dumped because “that bone thing was freaky”. A direct result of the thing I’d feared all throughout middle school: that my differences meant I wasn’t lovable or desireable.

Of course, that wasn’t true at all…but try telling a 16 year old girl suffering from her first heartbreak that, after she’s been told that yes, it is gross and it’s a major reason why she got dumped. I already had low self esteem, it was impossible for me to understand how shallow that person was. It was impossible for me to understand that I didn’t want to be with someone like that, that someone much hotter would one day fall for me and we’d get married and have babies.

Well, the baby thing was sort of an unplanned surprise. The first one, anyway. Before I got pregnant with Nolan, I couldn’t imagine having children still for the same reason: I couldn’t fathom them inheriting my bone disorder and suffering.

It’s funny, I never thought about me during all this. I didn’t think about how parenthood would affect my health, not even when I was pregnant and my parents tried to get me to think about my long term health. I didn’t really think about it at all until my second pregnancy, when my health deteriorated even more so and I couldn’t keep up with my toddler. That’s when my husband, Matt, and I decided to close up shop. We were apparently very fertile, and pregnancy was pushing my body into a realm of deeper issues. I knew if I continued to have kids, I would miss out more and more on actually enjoying things with them.

Like most moms will say, the first few years of parenting my first born are a blur. I know I had bad pain days, but I pushed through them. I had two surgeries when Nolan was little, and I forced myself to heal quickly…probably doing things before I should have. I can still picture myself walking around the appartment slowly and carefully with my crutches while babywearing Nolan so I could get him to the change table to change his bum.

When Nolan was diganosed with MHE, my heart broke a little. I think it was knowing that, because of me and my genes, he’d have to suffer through bad pain days and surgeries. I worried about high school, about how he’d feel. I worried about seeing him in pain, and how I’d feel. I still can’t picture the surgeries he will undoubtedly have. How will I keep it together, being on the other side of that operating door for the first time?

Becoming pregnant with Archer was a huge turning point. That’s when the mom guilt reared it’s ugly head, when I’d be immobile on the couch watching way too many movies and TV shows with Nolan because the pain was too great in my hips to move about. Our park trips were infrequent. As were our mommy/Nolan outings.

When he was born, I physically couldn’t handle the two of them together. Matt had to take time off work to help me, because dealing with a newborn was all I could physically do. I was spent simply just breastfeeding and holding him. My body ached from just those tasks. That coupled with the fact that I was severely sleep deprived (Archer never slept for long, and that carried on well into his 2nd year), my daily pain levels tripled. It’s hard to manage your pain when you’re not getting enough sleep.

Things got a little better for me when Archer got more independent. Then they quickly got worse again when he got more independent. Once Archer got moving, he didn’t stop…and he hasn’t. Keeping up with him is hard for me to do, but I try.

When he was diagnosed with MHE too, more guilt set in. I told myself that they would understand each other and have one another to weather through the sea of adolescence, because everyone knows mom knows nothing. Even though I’ve been there, that was like a thousand years ago and I’m also a girl.

I wanted to be the mom who took her kids on fun adventures every single weekend. The zoo, the Science Centre, Lego Land…but it hasn’t happened yet (at least not frequently). I can’t walk around or even stand for very long due to a bone growth on the heel of my foot (it’s like walking on a marble…a very large one). When we do go out, I’m in pain the entire time, trying desperately to hide it so I don’t ruin anyones day.

I’m short with my temper more often than not. It’s hard to react calmly and zen like when you’re constantly at war with your body to keep moving. I often feel like a failure because of it, because of all those articles I read that tell me the best mothers are always calm and happy and interactive. A side effect of my pain is to curl up inside myself, because I can’t curl up inside my bed. It’s how I cope.

Not every day is like that, of course. I do have good days. We do go out and do fun things. We have regular play dates, we go outside and play. In the nicer weather we frequently visit local parks.

If there’s one thing my boys learn from me constantly being in pain, it’s that I carried on. I pushed through all those bad pain days, I did what I had to do despite the pain. I cleaned the house, cooked meals, tried to make sure everyone was where everyone needed to be at the time they needed to be there. I hope they see the strength in that, as I am beginning to.


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.
This entry was posted in bits and pieces, blogging, challenges, chronic pain, confessions, emotional, family, figuring it out, frustrations, genetically mutated, genetics, growing, happenings, hard stuff, health/medical, heaviness, honesty, hopes, hurt, living with chronic pain, me me ME, mom life, musings, on struggles, pain, parenthood, parenting, personal, reflections, tough stuff, uncensored, updates, words and tagged , , , , , , . Bookmark the permalink.

10 Responses to Motherhood: Disabled

  1. I have the same fears. Without having a diagnosis, I have no idea whether I could pass this illness on. I also worry that I won’t be able to physically handle having kids.

    And then I see you, and how you are able to care for your boys. You’re such an inspiration to me! I know how it feels for even the smallest tasks to suck away your energy, yet you still push through. Those are the things Nolan and Archer will remember — plus they will appreciate having a mom who gets it. 🙂

    • Jess says:

      Thank you for those words Liz, they were just what I needed to hear. ♡

      If there is one thing I’ve learned throughout this journey:anything is possible. It may be hard but it’s possible…and worth it.

  2. Thank you so much for your bravery in writing this. You are amazing!

  3. Byron Hamel says:

    Life is great. I’m glad people brought me into the world, even though they had social and physical problems in the family. There were times growing up that I wished I had never been born, but I don’t think that’s isolated. It seems to be a fairly universal existential phase.
    In your case, you love your kids. That’s something I never had. They’re going to know that you love them. And that matters more than weekend outings or having enough energy to play, or pain, or basically anything else.

  4. S. L. says:

    This was very inspiring to read. You are an incredibly strong woman/mom, and I’m sure your boys will see that and learn from it!

  5. Brave. Strong. Powerful. You build the family that makes sense for your family.

    • Jess says:

      Thanks! You’re right. I’m trying to break away from the mindset of “if it’s not [a certain] way, it’s not perfect”. And I’m getting better with it!

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