Ah, the holidays! A time of cheer and good tidings… for many. Holidays with a chronically ill child can be challenging to say the least.
Many of the commercials and shows on tv portray families sitting around a dinner table or fireplace; smiles and laughter abound. Even the Hallmark Channel has captured many of our hearts with their predictable warm plots and sweet endings. Seemingly tumultuous problems are always resolved.
Obviously, holidays do not go that smoothly for every family. Still, you never stop wishing that your chronically ill child can partake in events and festivities that come with them. As a parent, you will move mountains and earth to make it happen!
In planning for holidays, the one part you always have to remember is that even joyous moments and events are often exhausting for a chronically ill child. This is extremely difficult for just about anyone to understand who hasn’t lived or been around a chronically ill individual. I have to say that I often have a difficult time with it myself.
I often run through the following mind/body logic in my head - If an event brings you joy -> shouldn’t that equate to positive energy and -> result in additional energy and stamina.
Happiness and Joy….leads to....Positive Energy…leads to…Additional Energy / Stamina. Right?
In my son’s case, the answer is “No, it often doesn’t.”
Holidays for my son require carefully well thought out plans. Although COVID has changed a lot of our usual festive activities and kept us mostly tied to home, we still have to plan. There is just a different or new kind of planning.
Maybe you are not planning a trip or having family and friends over. Instead, you are now planning multiple family and friends Zoom calls. And who would think that sitting in your own comfortable home talking to people you care about and are so excited to see could wear you out? Well, for my chronically ill son, it does. So, we manage the timing of the calls and his time spent on the calls.
In addition, food is always a big part of a holiday, no matter what time of year. In my son’s case with having multiple GI issues, food is not a pleasure. In fact, he told me that he wished he didn’t have to eat at all, never knowing what food or combination of foods is going to send him into a flare. It’s just plain and simple - there is just little enjoyment around food for him. I don’t say this to be sad or feel pity, it’s just an important factor in planning a holiday for my family.
So I came up with some holiday guidelines for myself so I can stay positive and not be disappointed.
Figure out what moments/activities are most important to you; the things you feel are imperative for your child to be a part of and just can’t miss. Pick and choose what is most meaningful to you. Is it the family Zoom call? Family Dinner? Family game night? Decorating the house together? Make a list and prioritize (mental or otherwise).
Figure out what moments/activities are most important to your ill child; the activities he wants to conserve his energy for. Sit down and discuss with your child what is most important. The list may surprise you. In my son’s case, visiting with a friend, even 6 ft apart with masks on the driveway is one of his most important. Game night is more meaningful to him than a family meal together because of his GI issues. Make a list with your child and prioritize.
Figure out what moments/activities are most important to other family members; the activities they feel the entire family needs to be a part of. Poll all family members - spouse, siblings, etc. Make a list.
Compare the three lists and come up with a compromise. Take into consideration what is most important to every family member and decide on what you realistically expect your chronically ill child to be a part of. I have often been surprised at what each person prioritizes as most important. Discuss potential plans with your ill child such as, “Is it better to host family/friends at your home so they can rest in between” instead of going to another house? Another question for your ill child might be - Is it better to have a family lunch than a family dinner? Consider what time of day your child usually feels his or her best. My son feels best later in the day. And so on…..
Know it’s okay to make the holiday special for other family members. Go ahead and plan that way; knowing your ill child may very well not participate. Everyone has an equal right to enjoy each holiday.
Allow yourself to enjoy the holiday. Let go of some of the sadness that your ill child misses out and even the guilt that creeps in when letting your own self feel happiness and joy.
In the past when I’ve gotten frustrated and even angry at my chronically ill son for missing out or not participating in an activity, he would tell me “he didn’t know” how important it was to me and that I should have told him. He put the responsibility back on me and he was right.
It’s taken me years, but I’ve learned that it’s okay to be excited about a holiday. It’s okay to push any sadness for my ill son to the side for just a bit of time. After all, I know that I can do things to help my ill son to be a part of a holiday but I can’t change what my son’s body may be experiencing/feeling at that particular moment. I just don’t have that kind of power... although I desperately wish I did.
So, I’ve learned that it’s OKAY to “brew hope” and feel happiness during holidays, soaking up the contagious excitement. I hope you do too.
I am not a doctor or therapist. I am not dispensing advice, but simply giving food for thought, discussing my personal experience in relation to parenting a child with chronic illness and the impact it has had on my family. I am not recommending any particular way of parenting; just sharing my experiences. Please consult your physician or personal therapist for issues you are concerned about.