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Fight rare neuro-immune disorders. Together.
It all started two years ago on October 4, 2014. A day I will always remember. Just like my children’s birthdays, it was another kind of anniversary, one I had no idea we would be, I guess you could say, celebrating for the next I don’t know how many years. On the night of October 2nd, Marcus was coughing so badly that he was throwing up and the next day, the cough seemed to have almost disappeared, but I noticed quite a few times that day that while he was walking, his left leg would just give out. He didn’t complain of pain so I didn’t really think much of it, until the next morning when he couldn’t bear any weight at all.
This was the beginning of six weeks of bringing him back and forth to emergency rooms and having my family doctor tell me the whole time that he will be fine and that it will go away, and to just wait another week. Finally, after six weeks of repeated visits I got an appointment with a pediatrician. They had no answers, so they sent me to SickKids in Toronto, Canada. As soon as we saw the doctor there, he told me that they thought what happened to Marcus was the same thing that had happened to dozens of other children all over North America, they believed he had AFM or TM from a virus, Enterovirus D68. They could not say for sure, but it was thought to be the cause of all of these random paralysis in children since 2012. I was terrified to say the least, and the next eight days are somewhat of a blur. For the most part I was at the hospital all by myself, wandering around aimlessly, thinking, wondering, how, what, WHY was this happening?! We were sent home for a couple weeks to wait and hear from a Children’s Rehabilitation Hospital, Holland Bloorview, where Marcus would have to go and stay for three months and get intense physiotherapy every day, sometimes twice a day, from Dec 8th-March 10th.
The whole time Marcus was sick and in the hospital, he would wake up every single day with this little smirk on his face. It was almost like he knew something I didn’t. At first I was terrified, I was afraid to be alone with my own thoughts, so I would keep busy, text or call my friends, anything to keep me from thinking about what the rest of my little boy’s life was going to look like. But every day he would wake up with that little smirk, and then just be smiling and happy all day. He got to go to school there and meet kids that were just like him, and different than him, but they were all treated the same. It truly opened my eyes to how blessed and wise my little boy had made my life. Now that I had been there many weeks, I now felt blessed, no longer on the brink of defeat.
My heart broke when I came to realize that we would be leaving Bloorview with Marcus not 100%, but even still, Marcus had awoken something in me, something I thought I didn’t have. I had always felt that if something like this were to ever happen to my child I would just curl up into a ball and cry–forever. But I didn’t, because he didn’t! How could this sweet little four-year-old boy be so brave, so strong, so wise, so sweet, so kind, and watch his mama fall apart. I would not let him see me give up, I would let him lift me up, and not be the one to bring him down.
Coming home and getting back to school was difficult, mostly because I didn’t want to let him out of my sight. At first he had a physiotherapist come to the school to work with him. I thought it would be once a week but it was more like once a month, which quickly became once every three months, and then I was told he wasn’t progressing and that they really didn’t need to see him, but I should keep doing physio with him 3-4 times a week. I was not happy with this answer especially since I KNEW his leg was definitely stronger then it was when he first got sick. I complained so they sent me another therapist who pretty much said the same thing. This past spring, I went out looking for another physiotherapist who would be willing to see that Marcus was not going to get better in weeks or months, this is going to take years, but Marcus is going to get better, and I found one! I will never lose hope that one day my little boy will come running to me and jump in my arms, without hopping on one leg, and without his brace. One day I will see him run a race faster than his friends, and one day I will see him help that other little boy or girl that doesn’t walk so well and show him/her that being different is okay, it can actually be way better than being the same as everyone else.
When we first came home, and even now, I find it hard to talk to family and friends about what’s going on with Marcus. I know it’s not their fault, and they try to say the “right” thing, but no one understands like someone who has been through it. I joined a Facebook group, Parents of Children with AFM. I cannot explain how much this group has saved my sanity, and picked me up on my darkest days. They were also the ones who introduced me to The Transverse Myelitis Association, which is how we got to go to the Annual TMA Family Camp held at Center for Courageous Kids this summer and met the most amazingly, inspiring, beautiful, kind, generous, determined people I have EVER met! I am so proud to be a part of this family, I definitely did not choose this, but I know with these guys behind us, we will be okay!
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