Updated: Apr 12, 2022
With the holidays quickly approaching, many of us are faced with the challenges of balancing our medically complex child’s needs with our desire to have traditions and some normalcy. For just a little while, you want to set aside the, oftentimes, chaos of your life and just be a normal family experiencing the magic of the season. For our family, we were faced with the dilemma very early on. Hallie wasn’t due until mid-January but came five days before Christmas. That year, we spent her first Christmas wondering if she would even make it to the beginning of the year. I had planned this perfect day, complete with presents in the morning for our older son and dinner with family. What we got was quite different. We quickly stripped away anything that wasn’t essential and focused on making the day meaningful for our 3 year old, while still being able to spend time at the hospital with our newborn. At the time, I remember thinking Christmas was ruined forever, but what I didn’t realize was that it helped put it in a different perspective. I quickly learned what was important and that has carried through with us for the last decade.
So how do you find a way to enjoy the holidays when this is typically the time of year most of us go into hibernation to try and keep our kids strong? I’ve learned there are a few things that work for us. We plan ahead, communicate our needs with family, focus on the important things, and keep our plans flexible.
Planning ahead is key to my sanity. Procrastinating always ends in disaster because you never know when your child’s needs are going to pop up. Without fail, every time I think I can leave things to the last minute, Hallie gets sick or lands in the hospital. It’s hard to do your shopping when you are staying home to keep your child healthy. I love online shopping, especially Amazon (as a side note- if you shop Amazon Smiles and select Heterotaxy Connection, you get to do your shopping while supporting your favorite non-profit). I can get most things delivered right to my door, everything from basic every day needs to presents. I start shopping early. The last thing I want to do is be trying to get last minute gifts while juggling doctor visits and medications.
We love to be with family this time of year. The holidays mean that much more when you can share it with your loved ones. However, don’t expect your family to just know what you need. Let them know if germs are a concern or if your child’s stamina will not allow you to spend longer periods of time with them. We have had years that we have chosen to stay home and spend the day with just our immediate family due to health concerns. Those have certainly been different but necessary. Make sure your family knows why you might choose to adapt or not participate. Does your child have special dietary needs or things that might make the day go smoother? Rather than get frustrated and upset because those aren’t done, talk to your family beforehand and plan how to incorporate those things in from the beginning.
I’ve found over the years that we try to fit so much in for the holidays. We want to make the day special and we tend to fill it with many small things. Instead, choose what matters most. For Thanksgiving, I want Hallie to enjoy dinner. We keep the morning very low key and let her energy be used for the afternoon. For Christmas, we open presents and then relax, maybe watching a movie or playing a game until dinner time. For New Year’s, Hallie never makes it past about 10:00 so we make sure we do a celebration early for her so she can get to bed on time.
And of course, despite the best laid plans, we’ve had holidays where she lands back in the hospital or is too sick to care. Through the years, I’ve come to the realization that Thanksgiving or Christmas or any other holiday is simply a day. If she’s too sick that day, we do the minimum for the other kids and then choose another day when she is feeling better to have our celebrations. When I have my heart set on celebrating on Thanksgiving or on Christmas, I am devastated when that doesn’t happen. I’ve learned that if I’m flexible and willing to change my plans based on her needs, it makes for a much more enjoyable day.
Holidays with your heterotaxy hero can be hard, but with the right perspective and attitude, you can make them more meaningful than ever before.