My longtime readers know all about Owen. He’s our oldest son, and has Angelman Syndrome. That’s a deletion on the 15th chromosome that leaves Owen unable to talk, plagued with seizures, and struggling with a severe case of Pica.
Since November is behind us and the Christmas season is full steam ahead, I’ve been doing a lot of reflection lately. Our holiday celebrations (from Thanksgiving to Christmas, and all the others as well) have completely changed over the years. Part of these changes stem from Owen’s Angelman Syndrome and Pica.
But, as we’ve stripped away or modified many of the traditions we’d clung to in the past, I’ve learned a lot in the process.
Here are five things my child with Angelman Syndrome taught me about Christmas.
1.How to Creatively Decorate
Our house is what many people would call unadorned. We don’t have a ton of knick-knacks on display. We can’t deck the halls as much as we have in the past. The flashing LED lights we enjoy trigger seizures, and the tree with its beautiful decorations is too tempting for Owen’s Pica.
For many years, we couldn’t have a regular Christmas tree, because Owen was so fixated on grabbing everything. We didn’t want him to try to eat a light bulb or ornament, and trying to keep him away from the tree was too tiring.
So, we got creative. We used the ceiling to hang things out of reach. We enjoyed a beautiful wooden tree my Mom made.
Now that Owen is a bit larger, we’ve discovered we can place our Christmas tree in the corner of the dining room, and use the table to block it. Owen is now too large crawl under the table, and since he couldn’t reach it, he finally decided to leave the tree alone.
It’s been nice for the other kids to have a traditional tree again, but when we couldn’t, we still enjoyed Christmas. After all, trees and lights aren’t the reason for celebrating Christmas!
Owen taught me to think creatively, and decorate in nontraditional ways.
2. To Focus on People, Not Things
When you accidentally leave a brand new book on the coffee table for a minute, and the cover and first few pages are torn out and eaten, you truly learn what you’re valuing in life.
Owen has taught our whole family the importance of people. As much as we enjoy our things, they don’t matter nearly as much as the family. We’d much rather spend time together, or with our extended family than focusing on the stuff.
Stuff is fun, definitely! But, it’s not what matters. We’re focusing on experiences, and enjoying time together.
After all, stuff can be destroyed in an instant, whether by a child with Pica, or a house fire. You never know what tomorrow holds, so focus on what’s important today.
3. To Realize Traditions Aren’t What Make Christmas Special
When we couldn’t put up a Christmas tree, we were kind of bummed. I was especially sad, because it was a tradition I really enjoyed from my childhood.
There are other traditions we haven’t been able to continue. We can’t stack presents under the tree, attend many events, or spend much time out in the snow. Life when you have a child with Angelman Syndrome changes.
But, I learned that traditions aren’t what make Christmas special. Christmas is about the birth of Christ.
No matter how you decorate, or how many festive parties you attend, you can make the season special. If you try too hard to ensure you have the “perfect” Christmas you’ll wind up so stressed that no one enjoys it at all.
I’ve learned to evaluate traditions from year to year. We scrap some things and do different activities. Some years, we scale way back and don’t do much of anything.
But, we still have a wonderful reason to celebrate, no matter what that celebration looks like.
4. To Take Things One Day at a Time
Back when we first hung up our 3D wooden tree, I didn’t think we’d ever be able to enjoy a big tree again.
I took that year’s problems, and cast them out over the rest of our lives.
I’ve done this with other things as well, not just relating to holidays.
Because Owen was fed through a tube when he was younger, I assumed he always would be. I used to stress so much because I couldn’t imagine dealing with the feeding pump when Owen was a teen.
Now he’s 12, and while he still has the tube inserted, we rarely use it. It’s for when he’s really sick and won’t eat or drink anything else.
Your struggles today are hard. They are very real. And sometimes you can’t see past them.
But, I promise you that the things you’re struggling with right now will change. What you’re overwhelmed with now will one day not be a problem.
One thing is for certain. I’ve learned I can’t take a single Christmas season and say with confidence that this is what all the rest of them will be like.
Some seasons of life are hard. That doesn’t mean they all will be. Don’t spend so much time worrying about what the future may look like that you forget to enjoy the present.
5. To Keep Food From Being the Focus
At different times, Owen has been on both the Ketogenic Diet and the Modified Atkins Diet for his seizures. While both worked great on his seizures, he’s no longer on either because of the behavior side effects he experienced.
However, while he was on them, we learned how much focus we had put on food. The ever-present snacks at family get togethers, the elaborate meals, the goody bags, the beautiful cut out cookies.
So much food is around during the Christmas season.
It’s yummy! But, totally not what Christmas is about. We’ve cut back a bit, and realized that we shouldn’t get so caught up in the food and all the preparation that entails.
Simple is good! And simple is pretty delicious too!
Your food doesn’t need to be Pinteresty worthy. It doesn’t need to take hours to prepare.
Make what you enjoy, and lower your expectations about food. Just enjoy some simple food while you enjoy your friends and family this season.
Owen has taught us to focus on the true meaning of Christmas. It’s not about goodies and gifts. It’s not about me and my expectations.
It’s about the Savior, Jesus Christ, who loved us enough to come to earth as a newborn babe.
It’s about the fact that he didn’t stay a newborn. He grew into a man. A man who was willing to die a horrible death on the cross for each of us. Who was willing to die for me.
I’m so thankful for that, and for the ways that little Owen has pointed us towards the real meaning of Christmas as we change our focus and traditions and spend time as a family.
Owen has taught me so much, and I’m thankful for that this Christmas time.
From our family to yours, Merry Christmas!
And, if you’re looking for Angelman Syndrome Christmas gift ideas, I have you covered in this post!