Christmas Dinner Vs. Crohn’s Disease
We saw the specialist. Three more months. Depending on what you are waiting on, it might not seem like long. But if you are waiting on pain relief, like my son, it seems like forever. What makes it worse is that he is going to have to go through more pain to get there. He has to learn to give himself Humira injections, and for a kid terrified of needles, that is the slimy coating on the whole mess. My son took it hard. After hearing the news, he was quiet. But true to his usual displays of courage, he was laughing after awhile.
His Crohn’s disease involves a lot of inflammation, which Humira should bring down. Along with his immune system and general feeling of well-being. The symptoms are rough, and involves even more stomach upset than he is used to. The only light at the end of the tunnel is surgery, and then, major improvement.
Still we have Christmas coming up. And like Thanksgiving, it centers around food. Our annual trek to the grandparents for turkey in November was interrupted by Dylan asking me to take him home right after the meal. I didn’t want to go back without him. So I want to avoid that on Christmas, and asked my mother-in-law to change the usual eat-then-open-presents schedule. But she thinks it would be just as good to let Dylan eat by himself when it’s all done.
I am livid. And hurt. Is he not worth the inconvenience? I am not eating Christmas dinner while my son sits there and waits. But I want to let my husband enjoy dinner with his family so I am torn.
Food is already a sensitive issue with me…. Because of Dylan, I don’t eat certain things. At least not in front of him. And even then, if I am eating BBQ or ice cream, I am usually sitting in my car. Like I am smoking crack or cheating on my husband. Leading a double life. Feeling guilty the whole time. It’s a horrible feeling. But I would feel much worse if I didn’t consider his feelings. I couldn’t enjoy a Christmas meal knowing that he was hungry, and that he was hungry because he wanted to spend time with his family. Honestly, I’ll probably boycott dinner.
Before Crohn’s disease hit around age 14, my son wanted to be a chef. That is like wanting to be a farmer and being allergic to grass. When eating food started causing him pain, his interest in cooking became a matter of function and nothing else. He used to have such great ideas for new dishes. Now he will never know the creative outlet of making and trying his own recipes, unless it is for a Crohn’s diet. His interests now are in art, writing and mostly music. But I still feel like this disease stole more than just his health from him. More than just dreams, but the ability to make some dreams come true.
Strangely, three months is how much longer I will have my job with ADT. But it is going to kill me every day I have to go to work and leave Dylan there alone with his side effects, with his school work getting more behind every day, with all his feelings of frustration, with his exhaustion. And without his mom.
