Mary, our miracle child

Hey there, time traveller!
This article was published 11/06/2015 (4015 days ago), so information in it may no longer be current.

My baby turns 18 today. And I am still in disbelief.

In many families, turning 18 is a milestone that includes getting ready to go to post-secondary education, high school graduation ceremonies and proms.

But in families such as ours, turning 18 is even more of a jolt and a reminder so many years have gone by. While you were going to work, doing things such as mowing the lawn or going to the cottage, you and your daughter were getting older.

As my late father used to say, you don’t realize how fast time goes by until you get living calendars in the house.

But, in my family, turning 18 is also a kind of gold star of survival. My daughter has survived to 18 years of age when many doctors didn’t think she would live past her first few months.

You see, Mary was lucky to live out her first week. She was only five days old when she had her first cardiac surgery after being flown by air ambulance from Winnipeg to the Hospital for Sick Children in Toronto two days before. The major cardiac problems she had were diagnosed when she was two days old, just minutes from when she was going to be discharged to come home for the first time.

Home turned out to be almost 11 months in the future.

In fact, shortly before Christmas and after Mary had suffered a cardiac and respiratory arrest, which kept us in Toronto for more than three months instead of the three weeks we thought we would be, doctors told us there were four things conspiring to kill her at the same time.

When my wife and I held up three fingers and said we only knew about her heart, liver and lungs, that’s when doctors said “You mean no one has told you about her brain?” Turns out, for weeks doctors in both cities had been concerned her head had stopped growing.

With our first child, I can remember snippets of her first few months of life: being in the delivery room, meeting her grandparents for the first time, taking her to her first restaurant and my wife and I walking around with her for hours when she had colic.

With Mary, if I sat and thought about it, I can probably remember every minute of her first few weeks.

Mary’s first year included two cardiac surgeries, numerous blood transfusions — many directly from me after the province changed the rules to allow a parent to donate — and many, many times when we didn’t think she would live through the night.

It also included the beginning of what would turn out to be a successful constitutional challenge against the federal government’s parental-leave provisions after I was denied benefits I knew I was entitled to. But that would take another five years to wind through the various levels before we were successful and changed the rules for families such as ours that had a child living with disabilities.

Mary beat the odds.

But while she has had many challenges through the years, including using a wheelchair and being tube-fed, we have also had so many fun times with her. We take her everywhere, whether it is to her favourite store, Costco — where she delights in grabbing people’s carts and then smiling beatifically at the person as they look to see who stopped them and then not knowing what to do as she continues to hold onto the cart — or whether it is on long weekends to the States, to restaurants, to beaches, or to go kayaking.

And thanks to the Children’s Wish Foundation’s Manitoba chapter, Mary got her wish last year. Because she loves going to beaches and splashing in water, she went to Hawaii, staying at a beachfront hotel on Waikiki Beach, going back and forth across the sand in a rented beach wheelchair and sitting at the edge of the beach as water encircled her legs. She went to a luau, she saw a whale, she saw huge waves, and she had the time of her life.

Mischief, laughter, and joy of life are her three greatest skills. We should all be so skilful.

We’ve also met people we never would have met if not for Mary. The families of children and adults with special needs are some of the most wonderful and caring people you can meet. And they truly are the ones who “get” what it is like to raise a child with special needs.

But now, as she turns 18, Mary and her family are also leaving the safe confines of the province’s pediatric system.

While Mary can stay in school until age 21, she now has to apply for social assistance to continue to receive the benefits she received as a child. We know there are unknown speed bumps and pitfalls ahead of us while we adjust to the new system, the one that will follow Mary for the rest of her life, long after her parents are gone.

We also are still in a more-than-year-long process, interrupted by family issues and changes to the provincial program, of working with the province to expand the bathroom of our house to accommodate an almost adult-sized family member who uses a wheelchair and can’t get into or use a tub or shower by herself. Thankfully, provincial workers have said the process will continue past her birthday because it began when she was younger.

My wife hasn’t been able to lift Mary for a few years. I know the time is coming when I won’t be able to lift her — and I know I likely shouldn’t be lifting her as much as I do already.

Many people have said it before, but we have learned more about life from Mary than from anyone else. She is a blessing, not a challenge, to us. We have never been upset Mary came into our lives — in fact, we were the ones consoling the doctor and nurses when she was born and they suspected she had Down syndrome.

A common story told to parents of children with special needs compares the birth of their child with going on a trip to Italy, but instead ending up in Belgium.

I never thought of Mary coming into our lives as a different vacation destination. If anything, we still went to Italy, we just saw more of it and have stayed even longer to enjoy it.

And when it comes down to it, I really have only three words left to say.

Happy birthday, Mary.

 

Kevin Rollason is a Free Press reporter. He recently won a National Newspaper Award for explanatory work in the case of Brian Sinclair, a disabled man who died in Health Sciences Centre’s emergency room after waiting 34 hours.