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When you lose an advocate

By Victoria Tkachuk

Nearly two years ago, I lost my dad. He was not very old, only nearing 70, and suffered a brain aneurysm that was fatal.

My parents had just visited two weeks’ prior, so I am grateful for having seen him so recently, and having a goodbye of sorts. This didn’t make losing him any easier, but softened the blow.

Since then, I have learned to reach out to others and talk about the pain of loss. 

I’ve found my role as a special needs mom prepared me because I have come to understand what happens when you have something very important taken away suddenly and unexpectedly—my son suffered a brain injury during labor and has cerebral palsy as a result.

That one medical incident forever changed his life, mine and his father’s, his siblings’ and the lives of others. In moments, something was taken from him (being a neuro-typical child) that can never be returned. It was a loss I felt deeply and struggled to accept. Similarly, my dad’s passing was earth- shattering for me, but I was able to cope with it, I believe, much better than I would have been able to without my son’s experience.

What I wasn’t prepared for was the waves of grief that came when I first realized that in losing my dad, I had also lost a huge supporter and advocate for my son. The first time I realized this was when a casual thought passed through my mind about Henry’s (my son) change from a crib to a bigger bed. Oh, I remembered, my dad said he’d help me design one. Cue the sobbing.

For months afterward, just looking at Henry’s crib would produce this effect. Even talking to friends about making Henry’s bed would prove too much to handle. My dad—also named Henry, like his father before him, had loved my little Henry so much.

In fact, Dad loved all my children so much, from the very start of each of their lives. What made my dad’s “grandpa love” so wonderful was that it wasn’t specially bestowed on any of my kids; he loved them all the same, wanted to know and nurture each of them as individuals, and help make their lives richer in any way possible. He was the kind of grandpa to get right down on the floor and play with them.

Where Henry expressed apprehension as a baby with other adults, my dad was the exception. He’d make funny faces at Henry and never shied away from helping him with physical tasks—although he’d always ask first if Henry wanted help. That’s a big deal to me; I much prefer people ask my son if he wants help rather than automatically doing things for him.

My dad always talked about my son to his colleagues and friends as well. Little Henry was as much a presence in their lives as my father was, which is remarkable considering most of them never even met my son. When we needed help paying Henry’s medical bills, my dad circulated a GoFundMe-style campaign and, amazingly, donations came pouring in.

During Cerebral Palsy month in March, or whenever something concerning CP came up in the news, my dad made a point to post articles on his social media accounts and ask me questions. He put CP in front of other people, gave them solid information, and always spoke positively of my son (and me, for that matter). Losing my dad felt like a crushing blow, not only to me but to Henry and all of my children.

I’m sad for my dad who won’t see Henry and his sisters accomplish so much, do so much, be so much of who they are. And I’m sad for my kids that they won’t have grandpa cheering them along the way. Even writing this, it’s almost too overwhelming to think about without tears.

However, I am so very thankful for his advocacy and the legacy of it. If he has inspired one other person to think about physical disabilities, cognitive conditions and the real people behind those labels, he has done my son, and others, a great service.

To my dad—we love and miss you, and will carry on your advocacy in your absence, to honour you.

Reprinted with permission from fireflyfriends.com.

Victoria Tkachuk has four children, three neurotypical daughters and one son with dyskinetic cerebral palsy. Her goal in writing is to connect special needs parents and make inclusion a reality in all our lives.

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