What it’s Like to Raise Children With a Disabled Parent

By Jodi Breitkreuz

March 10, 2020

My husband of 15 years, Allan was diagnosed with Multiple Sclerosis 12 years ago. We had suspected for a few years that something neurological was wrong. He’d started losing his eyesight shortly after University. MS can be difficult to diagnose and so it took us years to get an official diagnosis and begin treatment. Being diagnosed with a disease like MS is absolutely life-changing! It threw us off our plans for our future. Should we start a family? Should we stay together, could we stay together? How could we raise children, when their father would be disabled?

Choosing to Start a Family
After years of soul searching and reading about families with challenges, we decided that we wanted nothing more than to become loving, empathetic, caring parents. We had embraced our new normal; facing a future that felt less than optimistic, full of challenges, and the unknown. But, do any parents know what the future holds? No. That and the fact that we had lots of love to give, was the basis for starting our family, so we did. That journey took some time. Rounds and rounds of IVF. Fail, loss, and grief. That’s a long story for another day. Fast forward to 2016, we brought our sweet twins into this world, we haven’t regretted the decision to start a family for a single day.

How Life is Different
As the years have gone on, one thing that I realize about loving someone with a disability is that most of the “stuff” happens behind the scenes. Most of the people in our lives, even the ones we’re closest to, don’t really know how his disability has changed our lives. Appointments, medications, physiotherapy, emotional meltdowns, research about new treatments, diet plans, supplements, and problem-solving. We’re always problem-solving. Being diagnosed with a disability does not come with a guide.
When I was pregnant with our boys, there were lots of questions and concerns that came up in our minds. I’m the only driver, so how were we going to get them home from the hospital if I couldn’t drive? He has poor balance, could he ever carry the babies? He suffers from fatigue, could he help me with night feedings? His dexterity is diminished, will he be able to change diapers? His sight is poor, will he be able to mix a bottle? There was only so much preparation we could do, most of those kinks would be ironed out as a time with on. There were plenty of issues that came up, and each and every time we were able to come up with a solution. Raising children with a partner with a disability has been challenging, but it has also been incredible.

How Does it Affect the Children
When we were planning our family, my husband was concerned that one day our children would resent him for being disabled. Well, sweetheart, what kids out there don’t resent their parents for one thing or another? Right? In most of the research we read before starting our family, there was mention that children raised by parents with a disability were typically more empathetic children and adults. They understand pain and suffering, and they can help others in a more natural way. Our boys are only 3, but from what I see, they are already so empathetic toward their Dad. Since they’ve been able to talk, they’ve been asking him if he’s okay. It’s adorable and sweet. Being around someone in a wheelchair is normal to them. They’re used to him not carrying them, but they love how much he lays on the floor with them, and his big hugs. They ride on his walker and use toys as they pretend canes. It’s just so normal to them, which sets our minds at ease that they will be okay, even if their Dad can’t walk them to school, or teach them how to play hockey, or how to drive. Our home is full of love, affection, and support.

What Do Families with Disabilities Need
Don’t pity us. But you can certainly look at us in awe for all the hurdles that we’ve overcome. We’re proud of ourselves. We don’t expect special treatment. When we’re invited to parties, we make our own accommodations to make sure we can go. Don’t stop inviting us. We don’t expect others to understand the extra struggles that we go through, you can’t know unless you live it. I guess I just want others to look as us like we’re normal because we are. Like all parents out there, we’re just trying to do the best we can. Isn’t that just parenting?

We are a team of Registered Nurses across North America who use evidence-informed research, and a HUGE dose of empathy with each family we work with. We are so much more than sleep. Click here to find a Mama Coach in your area.

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