Written by Brenda Agnew, Client Liaison
Our first holiday season as a family of four wasn’t what I had hoped for or imagined. And it started an annual tradition of sadness and grief that lasted for many years.
Maclain was just about 4 months old his first Christmas. Just days before we had received the devastating news that he was profoundly deaf, the Cerebral Palsy diagnosis had not yet come.
That first Christmas was tough, but I worked so hard to make it as normal as possible. Holiday photos for the cards to friends and family, festive decorating, picking out the right gifts. I did whatever I could to make things as typical as possible in that constant search for normalcy. I was left exhausted and feeling depressed.
Each year I could feel it starting in the depths of my stomach just after Halloween would end and the holiday songs would start popping up on the radio. The stress and anxiety would build as I braced myself for yet another holiday season. Where had the joy gone? I used to love the holidays, and they say that seeing the magic of the season through the eyes of a child is supposed to be even better. But having a child with a significant brain injury made things tough.
Imagine searching for gift ideas for a child who couldn’t use the same things other kids his age would be asking for. Imagine looking for treats for a child who did not eat well by mouth. Finding ways to enjoy the sights and sounds for a child who was overwhelmed by stimulus and couldn’t hear. These were not my favourite things to do over the holiday season.
Picture Perfect
I used to say that all I wanted each year was just one good picture of my boys, in matching pajamas, in front of the tree, perfectly posed with no hint of the struggles we had raising a child with a disability. I don’t know why it was so important, but I would spend hours sweating, staging, and screaming trying so hard to get a picture where Maclain wasn’t falling over, or had his head in an awkward position, or his equipment peaking through. And a picture with Santa? Forget about it, that wasn’t happening.
It became an all-consuming feat that would leave me sweaty and swearing and no further ahead in the quest for the perfect holiday photo. We started to all dread it when I would say “it’s time for the holiday picture of the boys”.
Let it Go. Not Just a Great Disney Song...
It was only just a few years ago that I let go of the notion of what “perfect meant”, and began to remember and embrace the reason for the season.
Family, love and faith in what matters. I decided that a yearly picture of my boys in their matching pajamas, looking perfectly imperfect was exactly what I wanted. It’s us, and it shows the character of what our family is all about.
This realization changed the whole way I started to view the holidays. I let it shape the way we now approach this time of year. We started creating new traditions like going to the movies on Christmas Eve. It began a few years ago as a way to have a break before the madness of Christmas Day and as a way to just relax.
Mac loves the movies and it allowed our family to all be together doing something inclusive. That has now become one of our favourite family traditions. And when we come home, it’s matching pajamas for the boys (for as long as they continue to indulge me) and hanging out as a family celebrating just being together.
Redefining the Season with What Matters Most
We started looking for experiences rather than gifts for those years when finding the “perfect” gift for Maclain was impossible. Top 10 holiday toy lists are overrated anyways.
We started hosting more over the holidays, which sounds crazy, but it made it so much easier for us than hauling everything around and worrying about accessibility. We have had holiday dinners with frozen lasagnas and fish and chips when the prospect of cooking a large turkey dinner loomed too heavy or threats of pneumonia and a possible trip to the ER were close at hand.
Worrying less about what we were “supposed” to be doing as a “typical” family and focusing more on our real family.
And now as another holiday season is upon us, one that has actually seen us spending time in the hospital, cancelling some fun plans and crossing fingers we can get everyone healthy and stay that way, I am again reminded of what is important. Do what makes you happy, and brings you joy. That’s what the season is about, nothing more. Eat the gingerbread, drink the eggnog, light the candles and remember the important things, because that’s what it’s all about.
Picture Perfect
I used to say that all I wanted each year was just one good picture of my boys, in matching pajamas, in front of the tree, perfectly posed with no hint of the struggles we had raising a child with a disability. I don’t know why it was so important, but I would spend hours sweating, staging, and screaming trying so hard to get a picture where Maclain wasn’t falling over, or had his head in an awkward position, or his equipment peaking through. And a picture with Santa? Forget about it, that wasn’t happening.
It became an all-consuming feat that would leave me sweaty and swearing and no further ahead in the quest for the perfect holiday photo. We started to all dread it when I would say “it’s time for the holiday picture of the boys”.
Let it Go. Not Just a Great Disney Song...
It was only just a few years ago that I let go of the notion of what “perfect meant”, and began to remember and embrace the reason for the season.
Family, love and faith in what matters. I decided that a yearly picture of my boys in their matching pajamas, looking perfectly imperfect was exactly what I wanted. It’s us, and it shows the character of what our family is all about.
This realization changed the whole way I started to view the holidays. I let it shape the way we now approach this time of year. We started creating new traditions like going to the movies on Christmas Eve. It began a few years ago as a way to have a break before the madness of Christmas Day and as a way to just relax.
Mac loves the movies and it allowed our family to all be together doing something inclusive. That has now become one of our favourite family traditions. And when we come home, it’s matching pajamas for the boys (for as long as they continue to indulge me) and hanging out as a family celebrating just being together.
Redefining the Season with What Matters Most
We started looking for experiences rather than gifts for those years when finding the “perfect” gift for Maclain was impossible. Top 10 holiday toy lists are overrated anyways.
We started hosting more over the holidays, which sounds crazy, but it made it so much easier for us than hauling everything around and worrying about accessibility. We have had holiday dinners with frozen lasagnas and fish and chips when the prospect of cooking a large turkey dinner loomed too heavy or threats of pneumonia and a possible trip to the ER were close at hand.
Worrying less about what we were “supposed” to be doing as a “typical” family and focusing more on our real family.
And now as another holiday season is upon us, one that has actually seen us spending time in the hospital, cancelling some fun plans and crossing fingers we can get everyone healthy and stay that way, I am again reminded of what is important. Do what makes you happy, and brings you joy. That’s what the season is about, nothing more. Eat the gingerbread, drink the eggnog, light the candles and remember the important things, because that’s what it’s all about.
Thank you for joining us for this edition of Brenda’s Corner. Please continue to follow her family journey for advice, insights and education related to parenting and empowering children of all abilities. Any questions? Contact Brenda directly at agnew@gluckstein.com.
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