Making plans with Noah

At the beginning of the pandemic, my girlfriend and I decided to organize a fundraising campaign to donate money to the Regroupement de la trisomie 21 in Montréal. The name says it all, it was all about running for our boy. Since his birthday is June 21st, I decided to run for 21 hours! That’s how #courirpourNoah started, without any specific idea of what would happen next. To our surprise, many people got on board with us, whether it was to run, share on social media or donate. It was touching to see that. The idea was also to motivate people to train and get in better shape. Some were running their first marathon, others were running a few miles while sharing their experience via #courirpourNoah on social networks. The idea was simply to make people talk about Down Syndrome.

Each race is a personal challenge. Running 160 km seems easy to me now, although it is still a big challenge. I ask myself every time if I’ll make it. Running is also a way to teach Noah and my daughter June that it is possible to push your limits day after day. Initially, the challenges I set for myself seem impossible. However, if you break them down, if you believe in them and put in the effort, you can overcome them. I teach myself to surpass myself: year after year, you have to start training again despite your doubts.

Regardless of the child, I think the first year is a bit complex for the father. The mother is dealing with a lot of things, and as a father, there’s not much you can do except be there to support her. I had to be strong for my partner, Carolanne, supporting her as best I could in this adventure. Going to medical appointments, trying to learn as much as possible, seeing how we would build our lives and adapt. We quickly put aside the sadness that followed the announcement of Noah’s condition. We had some grieving to do, and then we decided that the life mission of our family cocoon was going to be positive, we had to adapt and make people aware of the difference by raising awareness about Down Syndrome.

With Noah, we had to consult a wide range of professionals: speech therapists, physiotherapists, etc. During each visit, we had to listen carefully and try to draw upon this expertise once back at home. The specialists gave us homework, which was very important, because it is at home that the child progresses. It meant building our toolbox at the same time as learning to be parents. Perhaps it was in this sense that we became caregivers. For all of us, this second year has been a tremendous learning experience.

Yes, I put pressure on myself to make sure everything around Noah is “aligned” and going well. I put pressure on myself to be a good dad, to be present both physically and mentally. When I’m with Noah, I’m 100% there. Running takes my mind off the worries I may be having. I’m a good dad when I’ve had a little time to myself, when I do something for myself, when I have a little happiness for a few moments. Being a good dad… It’s a difficult issue… I do the best I can.

Maybe we give ourselves less leeway. We want to learn quickly, because we want everything to be perfect. We make it harder for ourselves. We give ourselves less room for error, especially in the case of a child with special needs. At the end of the day, the child and the father have to allow each other time to learn: Noah teaches me, I teach him. It’s an exchange and it’s time spent together.

Today, Noah finishes class at 2 pm. So I will pick him up and stay with him all afternoon. On the weekends, we become more of a “play parent.” During the week, however, we try to maintain a structured learning environment for him, to introduce a little of what is going on at school, putting on our caregiver parent and teacher hat. I find the term “caregiver parent” to be a good illustration of our roles as parents of a special child.

You have to find a project or hobby that doesn’t necessarily have an end in itself and that you can repeat, an activity that inspires you, that allows you time for yourself, that makes you stop and focus on it. When you’re doing it, you’re not thinking about burdens and family life; you’re just thinking about what you’re doing, about yourself and how you feel. It’s time for yourself, to take off your parent and caregiver hat. If the dad is able to do this completely, I think it will help him to be a better human and to be happier. I love music and photography. Music, especially, is a great passion for me. I close my eyes and concentrate on what I hear.

We think about it, and it’s a little overwhelming. We don’t bury our heads in the sand about the future. Our little secret is not to think too much about the future. The plans we make now will change as Noah develops. So there’s no point in looking 10 years down the road, because a lot can change between now and then. Carolanne and I want him to be happy. Whether he lives alone in an apartment, with friends, or with us in a bi-generational home, the most important thing is that he is happy and has a social life. We don’t put pressure on ourselves and we are not making any plans “for” him. When the time comes, we will make plans “with” him.

For me, it’s a day of special gestures, but no more than that! A simple day, a beautiful day for which I have no particular expectations. It is a day that reminds me that… I am a father!

This summer we will be travelling with our family to Western Canada! The mountains are Noah’s great passion. So we will definitely be doing some hiking! Next year there will probably be a race to celebrate Noah’s seventh birthday and another fundraiser for #courirpourNoah.

• Témoignage d’un papa — Courir pour Noah (Regroupement pour la trisomie 21) (in French only);
• The Little Boy and the Sea (Beside);
• Telephone helplines;
• Intellectual disability: resources and referrals;
• Knowing the rights and status of the caregiver;
• Protecting yourself so that you can better help.

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