Navigating the Holidays with a Child with Chronic Pain

The holidays can be busy and stressful, even in ideal circumstances. But navigating the holidays while also taking care of an unwell child can be overwhelming. You may be spending time with extended family who don’t understand your situation or even believe that your child is suffering. Your child may not have the stamina to participate in all activities or to join for entire meals. Here are some tips to get through, and even try to enjoy, some of the holiday times.

Honor your child’s need to pace

Allow your child to participate in some of the planned activities and not others or to participate for a shorter period of time. Designate a space, if possible, for your child to rest and take a break. If you are going to be outside of the house, take two cars if you can so that someone can bring your child home early.

If you have guests at your home, encourage your child to participate, but allow for breaks as needed. Allow your child to rest and recharge at any time. Knowing that this is an option will make it more likely that your child will be comfortable participating. If your child feels that taking a break is not allowed, there is a higher likelihood that she will say she is not up to participating at all. Also, try to build in rest the day before and the day after an event.

Prioritize the activities to participate in

In the spirit of pacing, talk to your child about the various activities and prioritize together what is most important for your child to participate in. The same should apply to you as your child’s caretaker. Give yourself permission to also sit out some of the activities to rest or stay home with your child.

Help your extended family or friends understand your child’s condition

One of the parents from my Creating Bonds group said that reading The Smart Brain Pain Syndrome by Georgia Weston and Drs. Zeltzer was very helpful for her to explain to others what her child was experiencing. Explain in simple terms that it is unpredictable how your child will be feeling at any given time because your child’s pain and other symptoms vary from day to day and moment to moment. That way, it will not appear that your child is faking it if suddenly he doesn’t feel well.

Give your child “jobs” that are fun and simple

Have your child participate as much as possible by doing things that will be distracting and not too taxing. For example, assign your child to research recipes for their favorite dessert online and find one to make. If he can help you make it, great. If not, being the one who found it is still participating. If your child can sit down and mix ingredients, that‘s wonderful! You can ask your child to make place cards or wrap gifts while sitting in bed. Be creative about how your child can use their creativity to participate.

Take care of yourself

Make sure you pace yourself and build in times for self-care. This is the time you most need to make sure you sleep, eat nutritiously, and move your body. If you have a co-parent or a family member who has some time off from work, assign that person to help your child—even for short periods of time—so that you can take a break. See a friend, go for a walk, get your nails done—anything that will be relaxing for you and help you recharge.

Simplify your tasks and lower expectations

Give yourself permission not to decorate the best Christmas tree, cook the most elaborate dishes, or give the most special gifts. You can only do so much! The goal should be to connect with loved ones and enjoy yourself, so this is not the year to overdo it or have high expectations.

In the spirit of simplifying, here is the simplest, one-bowl Vanilla Cake recipe that is SO fast and easy:

2 ¼ cups flour (can use gluten-free)
1 ²/ 3 cups sugar
3 ½ tsp. baking powder
1 tsp. salt
¾ cups shortening
1 ¼ cups milk (or milk substitute)
1 tsp. vanilla extract
5 egg whites

Preheat oven to 350 degrees.

Grease a 9 X 13-inch pan (or you can make cupcakes).

Beat flour, sugar, baking powder, salt, shortening, milk, and vanilla in a mixer for 2 minutes.

Add egg whites and beat on high for 2 more minutes.

Cook for about 30 minutes in a pan or shorter for cupcakes.

Let cool before frosting it.

Happy Holidays and I hope you can find gratitude in small things throughout this season!