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 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.

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I wrote the above article on my old blog on February 10th, 2014. I've updated and cleaned it up a bit...but the breathe 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.

Safe Spaces and Representation in the Disabled Community

When I was a teenage girl struggling with the complicated reality of living with a chronic pain bone disorder, a well-meaning loved one made this comment in response to something I said:

"You are so brave. You experience pain every single day of your life, and you're still smiling."

At first I became reactive. I detested being told I was brave. It made me feel like I had to be quiet about my fears, because if I wasn't quiet...then I wasn't brave, was I? And each time I expressed my pain or fears, I would be told this. You are brave, Jessie.

At the time, I was expressing my heartbreak over feeling left out of the seventh grade camping trip. I wasn't able to participate because it was technically a sports camp, and I was recovering from another MHE related surgery.

In that moment, I felt incredibly hindered by my disability. I felt alone, left out, misunderstood, and angry. I wanted to be on that camping trip, too. I knew my friends were all bunking together, having the time of their lives. My two older sisters had also gotten to go on this trip with their peers, and they'd raved the whole time about how fun it was.

But when I vented to my loved one and they responded with the above remark...

I stopped. It was a double edged sword; a compliment in the highest form. Brave. I wanted to scream at that word, and uphold it. I wanted to be what they saw when they looked at me, but it was hard, damnit. It sucks being the only one in your grade to miss out on a class trip, and I just wanted to cry about that and not have to feel guilty or worry that I wasn't being brave enough.

Then this person shook their head and explained it to me:

"We don't call you brave because we want you to be quiet about your feelings and fears, we call you brave because you are honest about them. We call you brave because despite the pain you are clearly in, you're still smiling. You're still connecting with the world around you when you could just as easily let the tough parts of this life consume you. That's what makes you brave."

Anyone who knows me would describe me as being "bubbly". My family, friends, hell...it was on every single report card that got sent home. I was the happiest baby, the sweetest toddler, and the most compassionate student. I used to volunteer at a local recreational group for the developmentally handicapped for fun. I managed to get all of my high school volunteering hours finished within one week of camping, and then I spent the next three years volunteering my time because it was one of the most incredible experiences of my life. I made connections to a lot of different members and volunteers, and we had the best time camping, and those incredible human beings taught me so much.

Living with my own medical conditions and limitations, I could easily relate to the members of the recreational group. I drew inspiration from how happy they always were. They loved so freely, and laughed with a kind of carefree abandon that instantly put you in a good mood, no matter how shitty your week or day had been prior. It was why I loved spending so much time there. The experience reminded me not to sweat the small things and to always appreciate the gift of life you have been given.

No matter what hand you've been dealt...every moment, every memory, every experience and every connection, no matter how fleeting, is is a gift.

I don't complain often because I do not care to burden my loved ones with a barrage of never-ending negativity because I know how helpless it feels to be on the other side of that. There is only so much we can do for our loved ones when they are suffering, and changing an impossible circumstance for them is beyond our power. I can't make someone's chronic pain disorder disappear, but maybe I can teach them how to use creative distractions to cope with it and remain more positive.

I am not happy all the time, trust me. In fact, I burst into tears at least once a day even if I have a lot of awesome things happening that I'm really excited about right now. I can go from happily rambling on and on about those wonderfully awesome things, to bursting into tears over the stressful bits.

For example, just last night I was trying to talk to my little sister on the phone about Off Beat. We must have played telephone tag a hundred times all day long, trying to get in touch with each other. For two moms who are staying home with kids all day, we've never felt busier.

When we were chatting, I was telling her how overwhelmed I felt with trying to balance my work and having the kids home all the time. We have been sheltering in place since March, being selective and careful about who we see.

This means I have had my children home with me for 140 days.

Since my youngest started kindergarten, I've spent my days writing and doing behind the scenes author scenes. While they're both at school, I have a solid 6 hour work day where I can submerge myself fully in my writing and check off every single box on my to-do list. I know I'm blessed to be able to do this. It has had an astonishing, positive effect on my personal growth, and I didn't realize how vital it was to my own mental health well-being.

But now, I am finding it very hard to give 100% of my attention to anything. I feel as if I'm being pulled in a thousand directions without any give in any way. As we were chatting, I was folding and putting away laundry. I moved my knee the wrong way, and my right hip slid half out of socket and I burst into the most horrific display of "ugly crying" ever. I'm talking huge gulps of air, snot and tears running down my face, hyperventilating simply because that really hurts.

It happens to me quite frequently, since my hip joint doesn't sit properly in its socket. It slid back into place, and I was fine. The tears stopped almost immediately after, as they generally do once I've had a good cry. It's why I encourage tears: they are a quick therapeutic release.

As a child with a rare chronic pain bone disorder, I didn't complain. Not as much as people expected.

I would do my best to try to explain how I was feeling inside my own body without the "woe-is-me" tone. You see, I come from a long line of doers, so it's not surprising that I keep my complaints about pain and life to a minimum.

I was taught at an early age that although my life may be a little harder because of my bone condition, having a chronic pain disability is a free pass to treat people poorly. I was never allowed to lash out because I was in pain, and if I did...I was put on a time out.

To this day, I still remember the recovery of my first surgery ever. It was brutal and terrifying.

I went in to have a few exostoses removed. One was on the left inner femur just below the knee, one was tucked between the fibula and tibia, and the last one was located on my ankle at the fibula. That surgery was not the smooth-sailing picture we were painted due to variables outside of everybody's control.

My surgical team at Sick Kids Hospital in Toronto was amazing, but looking back...I can see that the trauma was real and valid. I was, at that moment, a very angry little girl.

Those three exostoses would be removed and I was supposed to head home the same day. However during the surgery...I bled from the bone itself when they cut into me, and my leg swelled up two times it's regular size in the recovery room, they had to cut off my hot pink cast and send me back to the operating room.

I required another two emergency surgeries after. One was to get the bleeding under control, which they did by extending my scar from the top of my inner knee to my ankle and putting in a drain. Before I could go home, I had to have one more surgery to remove the drain and stitch me back up again, then I had to learn how to walk on crutches.

I don't know if it was because of the trauma from the surgery and nearly bleeding out, but getting up and moving after that surgery was one of the most painful and hardest things I've ever had to do. My normally sunny disposition was gone, and I was being incredibly snappy at the physiotherapist because she was forcing me to do things that hurt. Each time she made me put my foot on the floor, the blood to flow back to my toes and it hurt more than I could verbalize. I remember even in that moment feeling guilty, but she assured me she understood and took no offence to my lashing out.

Even when I was finally home from the hospital, I was in agony. My small body had just been put through more than it ever had before, and I was only seven. I didn't want to try walking, didn't want to deal with that icky feeling of the blood returning to my toes.

I started lashing out at my sisters, because I was angry that I was in pain while they were able to play and run amuck. I was mad that they hadn't had to have a terrifying surgery a week beforehand. I was devastated that my older sister told me I couldn't have the Christmas present she bought me until I at least attempted to walk. She was trying to encourage me, of course, and I wanted the present, but I didn't want to walk or get up, so I threw a temper tantrum.

My dad didn't like my attitude, so he picked me up and carried me up the stairs to the bedroom I shared with two of my sisters, He set me down on my bed and told me that it isn't my sisters' fault that I am in pain, and while they all sympathize and wish my reality wasn't one of chronic pain and surgeries...that it was important to remember not to take your pain and frustrations out on loved ones.

My sisters' hadn't asked to be born healthy any more than I'd asked to be born with a chronic pain bone disorder. Sometimes, it's just the hand we're dealt...but you cannot punish other people for that hand.

I have always had a supportive and loving network. I know I'm lucky. I've written about the influence certain members of my family have had on me before. I credit my family for raising me right, for teaching me how to put on other people's shoes...or at least walk in step with them. I know that not everybody is blessed to have the same kind of people in their life as me. I know that that's probably why they act out the way they do; because they haven't been shown the kind of kindness and grace I have.

This is why it is crucial to have a safe, supportive network when you have a rare disease or chronic pain disorder.

The community support I offer doesn't come by way of a fancy registry. It comes from that small-town connection, from your neighbour checking in to see if you need anything because she knows you're sick.

Along with a few other MHE warriors, I started a group chat on Instagram where women with MHE can come together and chat. They can share their experiences or ask questions, and talk to someone who's been there. To be a part of it, all you need to do is send me a message and say you're an MHE Warrior in need of support. There are many ways to do this: you can use the contact form on my website or personally message me on Instagram, Twitter, or Facebook.

One of those wonderful warriors recently was a guest on the Abnormal Adjustments podcast. Lauren explains MHE perfectly, and what it's like to live with it, in episode 8.

I spent a lot of my youth and young adulthood searching for representation of myself in books and on TV, and it's finally happening. We have a podcast now!

As for representation...that's coming from me, and what I'm creating. I'm currently working on Rare Rebel, a brand new full-length book in my Rebel series that tells the love story brewing between Tommy Armstrong and Sam Henderson. Sam is the first character with a rare disease I've ever created. She shares some of the same conditions as me: MHE, a platelet secretion deficiency, as well as cyclic vomiting syndrome.

Off Beat, my upcoming rockstar romance, also features a character with MHE: a little boy who also has a spontaneous case of MHE. Eventually, these two series are going to cross over in the best possible way.

While I'm excited to be tackling MHE in my new stories, there's always room for more rare characters in my book world.

If you'd like to see yourself in a book, please fill out this form and I'll make it happen.

Divine Understanding

Growing up, I was always told that you had to forgive people to be truly happy, and so early on...I developed this need to do just that. Forgive the people who hurt me, and try my hardest to understand why they were hurting me.

I am an empathetic person. It's easy for me to "slip into someone else's shoes" and imagine their pain. Feel it along with them, in a way...wish to change it. This makes it somewhat easier to understand the motive behind someone hurting me.

Understanding the potential reasons for someone's cruelty doesn't always mean you need to actively forgive them, though. My friend, Candice, reminded me of this today when she came by for a porch visit and chat.

We got to talking about everything, from our careers (Candice is a wedding photographer) to our physical disabilities and how they challenge us, but we wouldn't necessarily say they completely hold us back. We also discussed some recent dramas other people have brought into our lives, and how frustrated I was that this person continues to spread fear and discord in vulnerable medical communities*.

One of my favourite things about Candice is how she shoots it straight. She doesn't sugarcoat things, and she calls me out when I need it. Today, I needed the reminder that not everyone deserves my forgiveness, and I don't have to give it to find peace or understand why a person acts the way that they do.

You don't necessarily have to forgive someone to understand them. There are many people in my life who have hurt me so deeply that I can understand their motives, but never truly forgive them, and that's okay. I still offer them kindness because that's how I was raised.

I think it's worth a watch or a listen, if you haven't already:

"When you're in a place of deep understanding, it becomes impossible to hate the perpetrators or to feel anything but compassion and forgiveness."

Generally, when someone enters my circle; they don't leave it. My circle is an endless welcoming, warm place, where you are free to be human and make mistakes. My circle is uplifting and positive: it is understanding. I have been a safe place for so many of my loved ones to come shelter their storms, and I always will be available for them that way.

But I expect things from the people in my circles, too. Kindness, mainly. So long as you are kind and doing the best that you can, I will love you and I will help you.

"Look into their hearts and see what could have been healed that was not healed: what injury or damage or twisted thought created that behaviour and have compassion for that poor poor person that that was the only way they felt they could get through life, behaving like that."

I have had to let friends go over the years when they are not kind any more, when they take and take and take instead of recognizing that you've got to fill your cups before you drink from them. You can't take constantly from your loved ones; you have to give, too. Your time, your kindness. The takers become toxic, and toxic gets removed from my life.

I always warn people, though. I always tell them why they are unsteady with me, and what they can do to make it better. I give them a choice to do better, or I let them know why I'm walking away from that particular relationship.

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*Since I've had more than one worried mom reaching out to me, confused and scared that their children with MHE are going to die of COVID-19 because some person on the Internet with a platform said they were at risk due to the heparen sulfate deficiency associated with our disorder, Multiple Hereditary Exostoses, I am going to take a minute to address that.

THIS IS NOT TRUE! This information has not been proven or backed in any way. Dr. Feldman, an MD and associate director at The Paley Institute in California says as much in this video he did back in March. He mentions MHE patients specifically at about 2:59 into the video.

Originally, this person got me too with that fear. I've since learned to let the fear mongering go and consider the facts presented by medical professionals.

So, if you are an MHE mama and your stomach is twisted with those same fears; please release them.