Updated: Oct 19
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 desirable.
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.
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 apartment slowly and carefully with my crutches while baby-wearing Nolan, so I could get him to the change table to change his bum.
When Nolan was diagnosed 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 its 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, our mommy/Nolan outings happening less and less.
When Archer was born, I physically couldn’t handle the two of them together. That second pregnancy and c-section really did a number on my already chronically hurting body. 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 reaction to 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 were we do get out and do fun things. We have regular play dates with friends, we go outside and play in the nicer weather and 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 hope they see the strength in that, as I am beginning to.
I wrote the above article on my old blog on February 10th, 2014. I've updated and cleaned it up a bit...but the heart of it is the same.
So much of what I wrote above really hit me in the chest. I remember these days so clearly; the early days of motherhood. The sleepless nights, the constant feeling like I wasn't getting it quite right.
The struggle of raising littles is a one known by every mother, but when you are also a chronically disabled mother trying to tend to your own needs as well as your precious babies...it can get heavy and hard.
I was happy then, of course. I have always been happy and always felt blessed. Just because one is thankful and appreciative for their life and the gifts in it, it doesn't mean they don't have heavy things they carry and break apart over.
I have always broken apart over the thought of my child's suffering. Knowing this condition the way I do, I could never deny how painful it is...or how the surgeries are a double edged sword of suck. Multiple surgeries are the only solution we have here for some semblance of temporary relief. Whether you've had over thirty surgeries, as I have, or one...medical trauma is often a result of invasive surgeries.
I still have panic attacks when I need to go in for an operation, and you wouldn't know it to look at me. I know the routine, I know what the end result will more or likely be. Surgically removing the sharp, hooked exostoses offers relief to the surrounding tissues and tendons, and that improvement keeps me grounded.
Out of necessity, I've had to find a way to carry my many anxieties without letting them sabotage my care. It's a constant balancing act, one that I sometimes can't manage on my own.
I promise you; even "healthy" mothers have these feelings of guilt and failing. We are doing the toughest job out there: raising little human beings to be decent and contributing members of society.
Women are maternal; it's how we're hardwired. My childless woman friends have just as much maternal instincts to care for those around them, to put everyone else's needs before their own. Whether you're raising children or not, women bring a certain kind of magic to the table. We are the givers, we are the community builders, the heart...the home.
You should always be able to find the support you need with the community you build around you though, so please don't hesitate to reach out when and if you are struggling. Even just talking to someone about your feelings can help validate them and remind you that you are still a wonderful mother despite your bad pain days.