BY: BARB KUSTEC
Today as I write this I want to scream, “Yes! You can have a merry Christmas after a family member’s brain injury!” I want to shout it out from the mountain tops and let everyone know.
But today, after all, is a good day for me.
Now ask me on one of my many not so good days, and it might only be a whisper of a yes, but it would still be a yes!
This will be our fourth Christmas after my son, Chris’, brain injury, and this year we are stepping away from our holiday traditions and going on vacation as a family.
I would like to say we all wanted to ‘skip’ Christmas and go away this year, but it was my idea. After all, I am the one who does all the preparation for it and I did not want to spend my limited time, energy and money on gifts and decorations.
I wanted more time to rest and enjoy my family. We will still participate in the real meaning of Christmas while we’re away, but we are saying goodbye to the materialistic, unnecessary work and clutter that comes with the holidays. So basically, this is just another idea I had to avoid caregiver burnout!
Christmas year two and three post brain injury were very different. For one, we stayed at home, and we were not ready to host a dinner like we normally do. Lucky, our families took us in.
One of the big ways my son’s brain injury has affected the holidays is that it takes attention away from our daughters. The focus is always on the person with the brain injury, holidays or not. My son is now over the age for getting gifts in my family, but he still gets them, and the siblings take note. I hope noticing this has developed empathy in them and and not jealousy, envy or, worse, anger.
Of course my son’s brain injury slows the family down. It takes longer to do anything, and sometimes once you get there, Chris wants to leave because the noise and chaos are too much.
The extreme fatigue from the brain injury no longer lets us swing by more than one event in a day. And preparation is mandatory, because with the brain injury, there is no room for flexibility.
My son hates change and gets frustrated with anything different from what he’s been told about in advance. We never surprise him with last minute changes and plan nothing else on a day of a big event. Easy and simple, right?
But writing this really reminds me of our first Christmas together post brain injury. Let me give you a little background of where we were. Our son had been catastrophically injured in a car accident on Aug 20, 2011. It was a miracle that he survived, and then was able to walk with a walker at seven weeks.
At about three and a half months, he was able to start eating on his own, and get off the feeding tube. At four months he was coming home. It was planned for Dec 21, 2011. According to my son Chris, that was his best Christmas present ever – to come home to his family.
Now I, on the other hand, was doing everything I could to keep him in over the holidays. Why might you ask?
Well first, it meant I was now responsible for him. I did not feel ready to take this on at all. Was I a nurse, a doctor or a feeding expert? No! I was none of the above, but I was in charge of him. Everything shuts down over the holidays, there’s minimal staff at support agencies and doctors’ offices are closed. I was terrified to become my son’s full time nurse, taxi driver, rehab worker, you-name-it worker.
Did I mention I was scared? I did not know how to care for a brain injury. What if something happened? I was not even thinking of Christmas, only of my fear and lack of ability.
What could we do but grin and bear it? We had to rush to get prescriptions ordered now that we were in charge and before the doctor’s office shut down for the holidays. We rushed to get a tree and decorate it, and find room for it, as the living room now housed his hospital bed and the dinning room table was his rehab/nursing station.
I can assure you there was not a turkey served in our house that year, and there were no parties or socials. Luckily, our extended family prepared a holiday dinner.
That Christmas was all about quiet visits from close friends at Chris’ bedside, and us. It was the best Christmas I could have imagined. After all, we had our son home.
Turns out Chris was right, and I was wrong. I got caught up in the all the work and fear. I forgot what the real message of Christmas means to me – God’s love sent through a small helpless baby named Jesus. Helpless and weak, that was our son too. And God showed us His compassion through Jesus for us.
Compassion and love for our son, that was all we had that year, especially. Wow, we had our son home for Christmas. There is no better gift. I thank and praise God everyday.
So yes, there is a Merry Christmas after a brain injury.
Barb Kustec is the mother of three – Christopher, age 23; Cassandra, age 15 and Samantha, age 12. She is married to her husband, Danny. This is her third article for Brain Injury Blog TORONTO.