Six years ago Heidi and Matthew had promising healthcare careers, a baby girl and a new house. Then Matthew had a seizure and was diagnosed with an incurable brain tumour.
When our daughter, Brooke, was four-and-a-half years old, Matthew wanted to teach her how to ride a bike without training wheels. He wanted to let go of the back of the bike when she wasn’t looking the way his father taught him. But she was too young.
When our son Zachary was two-and-a-half years old, my husband Matthew bought him a hockey net and sticks to teach him how to play because Matthew was an avid hockey player growing up. But Zachary was too young.
Matthew makes sure to read to our two-year-old son, Joshua, before he goes to sleep at night and whispers some life lessons in his ear. But he is too young to remember.
Matthew wants to reach all these milestones with our children before they are ready because he might not live to see them actually happen. That’s because Matthew has brain cancer and when he was diagnosed six years ago, he was given three to five years to live—if he was lucky.
We found out in the most shocking way possible. One minute my seemingly healthy husband was picking up our young daughter at daycare, and the next he was having a seizure on the playground because of an incurable brain tumour the size of a baseball. News like this at such a young age is earth shattering. All our hopes and dreams of what we thought our lives would be like were gone in minutes and a new version of “normal” had to begin.
There is no skirting the issue: we are not going to grow old together. Faced with this reality, we have forced ourselves to focus on the most important things in our lives. We explored and advocated for every possible treatment available to Matthew and we never give up hope. At first we thought we thought we would not have more children because of Matthew’s diagnosis and our uncertain future, but with time we decided we shouldn’t have to give up our dreams of a big family. Our daughter now has two siblings and she will never be alone.
Needless to say, our parenting skills are likely very different from the norm due to our circumstances. We probably spoil our kids too much and don’t enforce as many rules because every moment Matthew shares with the kids might be his last. That’s the reality we face. And when you live in the moment like we do, it’s amazing how even small things take on such incredible importance. Walking the kids to school. Playing board games on a snowy day. Spending an afternoon at the park. Watching our kids laugh.
But when everything is important, any deviation from perfection can be emotionally devastating and draining. For example, at one of Brooke’s birthdays, I lit the candles without checking if Matthew was around and he missed it. Seeing Matthew so upset will stay with me forever and the guilt I felt was horrible. Slowly over time I have learned to not be so hard on myself when things like this happen and Matthew’s constant support and appreciation for everything I do for him and the kids gets me through these low moments.
I often wonder: if this hadn’t happened to us, would we have slowed down and appreciated these little moments? I can’t tell you I honestly would have. So while I hate that we have to live this way, I like how it’s made us truly appreciate every minute of our lives and time with the kids. As the saying goes, “Enjoy the little things, for one day you may look back and realize they were the big things.” Truer words have never been spoken.
(Photo: Paula F. Photography)
This is #1000families post number 52. Do you have a family story of your own to contribute to the 1,000 Families Project? Or do you know a family that might want to do so? Learn more about how the series got started and how to get involved here. You can find all of the #1000families posts here.