The pandemic has made caring for our son with multiple disabilities harder than ever
Children belong in the home — not long-term care — but parents need more support
My name is Jean-Pierre, I'm 43 years old and the father of a 13-year-old boy, named Mikael, with multiple disabilities and epilepsy.
Mikael is neurologically a six-month-old baby and he's fully dependent on others. He doesn't speak or walk, he uses a wheelchair, wears diapers and only eats purées. Mikael was born a healthy baby; the delivery went very well but at the fourth month, he started having multiple seizures. He was having about 50 seizures a day. We rushed to the children's hospital and stayed 23 straight days.
After many tests, we found out he had heart and brain defects, which he then had surgery for. He had heart and brain surgery by the time he was eight months old. A pulmonary vein was mixing both bloods and his frontal right lobe was very affected, which was the cause of his epilepsy activity.
A lobotomy was performed and stopped most of his seizures. He is doing much better, but still has about three seizures a day.
It's been very difficult, but the last year has been the hardest period of our lives. This pandemic has brought us many times close to complete exhaustion. Taking care of Mikael is very physically tiring. He has to be fed, bathed and clothed, his diaper must be changed about five times a day and we have to entertain him constantly.
We go for walks every day because he loves to be outside, during summer and winter. He has no interest in watching TV or playing with toys. He mostly likes human contact, especially from his mommy and daddy. We both have started working from home during the pandemic, and to be able to manage both work and our son has been extremely challenging.
Spending a whole day with my son takes an enormous amount of energy. A good night's sleep would help, but Mikael has most of his seizures while he is asleep, and we have to wake up for each one. We monitor his sleep with a camera in his room because we're afraid that one day he could suffer from SUDEP (Sudden Unexpected Death in Epilepsy). Mikael often stops breathing during seizures so it is important that we are close to him in case we need to call the first responders.
I will always give everything I have to care for my son, but my health is not what it used to be. I take medication daily for my body aches, and I'm mentally tired from not having a good night's sleep.
For a couple of months, we had to take care of him on our own 24 hours a day. Now that schools have reopened, we can now rest a little more.
In December 2018, we moved to a new house in Longueuil to be closer to Mikael's new school, and we started the process of applying for Quebec's home adaptation program right away. Because of the pandemic, our project was put aside but finally next month, our bathroom will be renovated with a new shower without a threshold.
I have been carrying Mikael in my arms from his room to the bathroom to bathe him for the past two years. Now that he's a preteen and weighs about 100 pounds, my wife and I need to carry him together.
At the height of the shutdown, the respite centres were closed and it was not possible to have help come to our home, making life very difficult for us. They are now open, but they cannot operate like they used to.
They are doing an amazing job, but space is limited and so is help at home. We had a kinesiology student coming to our home five days a week last summer, but she went back to school in September. Since then, we haven't been able to find a replacement.
We are also worried about having someone over who could infect Mikael. Since he has a weak immune system and gets often sick, we are concerned about possible complications he could have from COVID-19. So, it is very important to have one dedicated helper who is used to taking care of children with special needs under the sanitary measures.
We haven't found that kind of help yet.
We are also very worried about sending Mikael to school, but at the same time he needs to continue his treatments and see other people — and it gives us the chance to work and rest. The school has been doing fantastic work and very few have been infected, but we are still worried. He's had pneumonia twice — at age four and two years ago after having hip surgery — so we have been keeping him home once or twice a week to lower the chances of him getting infected.
This gives us very little time. Having Mikael home all day limits when we can do the rest of our chores, like cooking and cleaning our house. It's hard to find time to rest or to even think of something else; there is always something to do. There are also regular follow-ups and hospital appointments.
It gets very heavy to bear most of the time, but we have no choice. We keep moving forward for Mikael.
Taking care of Mikael is never easy, but this pandemic made us realize that there is a need for the government to improve what help is available to children with special needs and their families. We are often left out and forgotten, which results in many parents having to place their kids in long-term care, away from their family.
I strongly believe that parents do it not by choice but because of exhaustion and lack of services.
It brings tears to my eyes just by writing these next words. When I first laid eyes on my newborn son, I felt this strong connection between us. Life suddenly made sense! I was deeply in love with Mikael. As the months passed by and Mikael started feeling bad, seeing him in pain at the hospital, sharing all this pain together brought us even closer. It was like we were one.
He was not even one year old and we had spent two months at the hospital. We were basically living there. I couldn't leave the hospital, not even to go home and take a shower. I was there for him every time he would wake up from a nap or surgery. And I think going through these bad times, Mikael developed a strong connection with me, too. Until this day, every time Mikael sees me, even if I'm away for only 10 minutes, he gets all excited like a little baby that sees his daddy coming home from work.
We still cuddle every day, I kiss him constantly and I believe we will go on forever with this relationship. I cannot imagine my son being able to live anywhere else than home. I believe it would be the end of him. So that is why I think that with a little more help from the government, us parents will be able to overcome all the challenges that our children bring us, and keep them home where they belong.
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