Not only do I have congenital heart disease, but I also work with pediatric cardiology patients. Every year, we sign Christmas cards for the families who have lost their children during the year to CHD. It truly pains me to see how many families will be so broken this holiday season because of the loss of their loved one.
That moment really made me reflect on how during this time, the expectation is to put up your decorations, bake cookies, wrap presents, sing carols and spend time with family—but there are so many who have had their joy stolen for one reason or another.
When I first saw that I’d be writing a blog the week of Christmas, I wanted to write some profound piece on holiday traditions, reflecting on memories with family and sharing the joy of the season with others. But the truth is it’s hard to do that for some people—myself included.
Sure, we all hopefully have some fond memories of the holiday season but as an adult with CHD, we may find ourselves less in the holiday spirit for a reason that is somehow tied to our conditions. Maybe you’re having health issues. Maybe you’re financially stressed due to medical bills. Maybe you don’t have a good family support system. Or maybe you too are losing or have lost someone to CHD.
On November 10, 2013, my nephew passed away very unexpectedly getting ready to play a friendly game of soccer with some friends. He had truncus arteriosus and while we knew he’d need an additional surgery at some point in the future, he never complained or showed signs that something may be wrong. He was 20 years old.
My half sisters are both older than me so Drew and I were only six years apart. He was more like a brother than my nephew and I always looked forward to seeing him during the holidays. His death has had such a profound impact on our family that when I reflect on memories and compare them to present times, it makes me really sad to see how things have changed so drastically.
Although two years have passed, I still think about my nephew very often, especially around the holidays. While things will never be the same, I consider myself blessed to have had 20 years with such a remarkable, caring person and I know Drew would want me to see the joy and beauty in all life has to offer.
To be quite frank, CHD sucks. There is no other way to put it. It can steal our joy by taking those we love, placing us in a financial burden, making us not feel well, or causing strain in relationships. So this holiday season, take the time to find and keep joy in your perfectly imperfect heart! Volunteer at a nursing home or soup kitchen. Create new traditions with family. Do something in remembrance of a loved one. Sit in quiet reflection and write down all of your blessings despite the struggles. Pay it forward when you can and be a beacon of light to someone even if your own world seems dark.
I’ve found the best way to find joy in the holiday season is to provide joy to someone else. You never know when you may find comfort through a conversation with a stranger or much needed laughter from reminiscing on a memory.
Always remember—at the end of this life, we will not be defined by CHD or the challenges we faced, but rather how we responded to them. And it’s my hope that we will always find our way back to joy.
Wishing all of you a very happy and joyful holiday season!
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