Mommy Is Still Mommy – How Our Children Have Coped with My Spinal Cord Injury

Every year I dread Labour Day and the blunt transition it brings: summer vacation to the school year. On the last Monday of summer holidays, as I was getting my boys ready for bed, that all too familiar feeling of bewilderment crept up on me as I thought about how quickly they are growing up. They are beginning to leave interests and other aspects of their younger years behind them. I have mixed feelings of excitement, trepidation and longing as I think about the new school year. I’m excited for the adventures they have yet to embark on but I’m nervous that they will stumble down the wrong path. I long for the simple days of toddlerhood, which admittedly were not without many challenges, but I was more in control of their worlds and what they were exposed to. Their questions could be answered simply without the constant noise of the world around them and the knowledge that quickly comes to them when they have the ability to read. But as I sang them a song before bed, the same song I have sung them almost every night since they were born, I started to think about the small amount of time they have been here on this earth and how much life they have already lived. When I think about the challenges these two boys – at six and seven years old – have already overcome, and the way all three of my children have handled themselves since my accident, I find myself amazed by their resilience and capability. And I realize my children have taught me about what is truly important in life and what is truly important in people.

Before my spinal cord injury, I don’t think I ever gave much thought as to why children love their mothers or, more to the point, why my children loved me. Yet day-after-day, mistake-after-mistake in the learn-as-you-go game of parenting, they love me; they trust me. They give me chance-after-chance to get it right (or as close to it as one can get). When I fell, my boys were terrified; I can still hear their screams from that night. But at the ages of four and six, all it took for them to be reassured were three simple words “Mommy is ok”. They took those words at face value over the days we were all apart. But what amazed me most is that even once we were reunited, their opinion never changed. Mommy was ok. Mommy was alive. Mommy was still Mommy.

Initially after my accident, the thoughts about how our family life would change ran through my head faster than I could process them. I missed my children like you wouldn’t believe but I was nervous to have them come visit and assess the damage for

Movie night at the rehab centre

themselves. When they finally visited the hospital my boys were brave and their questions were innocent and endearing. They wanted to push my wheelchair – ride my wheelchair – and play with the buttons on my bed. They would snuggle with me in my fuzzy-make-me-feel-like-home-blanket and then try to steal it for themselves. They would climb on my bed and brush my hair. They brought a box of games from home so we could play together and on one or two occasions we pushed two hospital beds together and all snuggled up to watch a movie. They understood so quickly that I was still the same person I was before my accident; something that took a number of adults in my life a long time to sort out. Paralyzed or not, my boys still loved me.

My daughter was more difficult. At only 18 months old, the whole thing was very confusing to her. My sweet baby girl treated me like a stranger. We would get little moments here and there where she would sit with me or play a game with me, but they were short-lived and when they were over I was shattered all over again. I remember one visit in particular that was quite emotional for me. My sister brought our daughter for a visit. Ian went out to get lunch for everyone and left our daughter with my sister and me. As Ian left the room, my little girl acted like she had been left with strangers. She was inconsolable and didn’t want anything to do with me. Every part of me wanted to disappear and never come back. Before I had children, one of the things I looked forward to was that I would be the person my child always wanted – to help them when they are sick, sad, hurting or scared. And yet at that moment, I was not who she wanted. Even worse, it was like I was the one causing her pain and it was almost too much for me to take.

But, as far as I knew, my fuzzy-make-me-feel-like-home blanket did not have vanishing qualities, so disappear I could not. Instead I stayed calm and I talked to her. I could see

Playing games was one of the only things she would let me do with her

my sister out of the corner of my eye trying to decide if she should step in. I eventually calmed my daughter down by only talking. That was one of my first instances of learning how to better negotiate with a toddler (crucial when you’re paralyzed if you ask me). I convinced her to play a game. Every second of that encounter felt like my new verison of motherhood was betraying me: I couldn’t pick her up, I couldn’t snuggle with her, I felt like I couldn’t comfort my daughter. But, there we were: quiet, content and playing a game. When Ian returned I remember my sister telling him how it all unfolded and how, from her perspective, she was impressed at my ability to put my feelings of heartbreak aside in order to best help my daughter in the only way she would let me. And although it still stung me like you wouldn’t believe, I realized that there was a part of my daughter that still knew who I was. My daughter still loved me.

Anyone who knows love knows pain. Out biggest struggle with our boys was being away for so long. It got to the point that visits always ended in tears because we all just wanted to be together. About 10 weeks post-accident, I’d had enough. After meeting with my team of specialists, it was unanimously decided to change my treatment plan to let me get home and start the next part of the healing process. Now, at this point, home meant moving in to my in-laws’ inaccessible house for about 6 weeks. I never thought I would live with my in-laws and I’m pretty sure that if you were to ask them they would say they believed the same. So how amazing is it that they opened their home to us so we could be together as a family? We slept on a mattress on the floor in their dining room and our boys (who had a room upstairs) slept next to us on a mattress of their own. We had to manoeuvre stairs, put paper up over the dining room’s glass doors for privacy and I had to shower at my parent’s house, but it was all worth it to be back with our children. And, it was here that I started to get pieces of my daughter back that had been missing for 10 long, miserable weeks. But it is when we returned to our home, that my relationship with my daughter came rushing back full-speed.

Being able to get out of the rehab facility and back with our children was wonderful, but nothing compared to going home again. Getting back into our own space and our own little life felt like we were finally in a place to start the unknown journey that lay ahead of us. Probably the most challenging thing for us in the transition to our own home was the lack of grandparents around for extra help with the kids during the day-to-day.

I have said before that having a spinal cord injury takes up a lot of time. A few of the main things that take up a lot of extra time for me are bathing, dressing, using the bathroom, and transferring from my wheelchair to the bed/couch/car and back again. In the beginning, when I had to rely heavily on Ian for help with all of these things, it meant that we were both tied up and weren’t as readily available for our kids. Our Netflix account got a lot of use for a while because it felt like the only way for us to survive. But our children were continually surprising us with their patience and their ability to understand, despite their young ages, that the trade-offs for Mommy being ‘ok’ were these changes to our life and the extra time a lot of them entailed.

I was amazed at how much our children understood in a very simple ‘that’s just the way this is now’ kind of way. The fact that I pee by inserting a little tube called a catheter every few hours was interesting to them for about a minute. We take the long way around buildings to find ramps and go out of our way to seek out accessible washrooms. There are very minimal complaints about waiting when the choices are ‘don’t wait and go without Mommy’ or ‘wait so that Mommy can join in’. If they have to wait for any other reason, then we head back into typical childhood whining territory.

When we all went to Disneyland, I did almost every single ride with some pretty ridiculous transfers. While our kids had the meltdowns we all expect when visiting The Magic Kingdom, they were never because they had to wait for me to transfer or use the washroom. Not once did I ever feel like I was burdening anyone in order to participate. My kids made me feel wanted. They still wanted me to be a part of the experience with them.

My children are capable of more than I ever expected. The boys take so much initiative now to help me. Whether it’s assisting me load my chair in my car, carrying bags out of the store or helping get something that is out of my reach, they want to help make my life easier and for them to realize that and make those selfless decisions is commendable.

Our littles have also learned how to ‘work the system’ so to speak. For instance, they know I take longer in the bathroom in the morning, so on Christmas morning I was instructed to wake up earlier so as not to delay their Santa reveal. Yeah, they have it figured out. They have also figured out that we are still a family like any other and I am still a mom like any other. My daughter is my little girl once again and doesn’t see my wheelchair as something that makes me different. My boys understand that it makes me different, but doesn’t make me less. And they never have shown signs of embarrassment because of my disability.

I want to be clear that our children are far from perfect. Parenting is a struggle and we come up against roadblocks all of the time. But when it comes to the adaptations that we have had to make in our lives because of my spinal cord injury, the kids have been resilient, patient and quite selfless. They have made me proud. I still don’t know if I could tell you why it is they love me but I know, without a doubt, that they do. And I know they love me for the mother that I am for them. Children don’t see differences until we point them out. They don’t hate until they are taught how. They see no reason to discriminate or pity another person based on their physical appearance. But they know when someone is unkind and they know when someone makes them feel safe and loved. And in my children’s innocent perceptions, they have taught me that the person inside is always the most important thing. If the person inside is ‘ok’ then figuring out the rest is just logistics.

Hospital visits