Dealing with a chronic illness, is tough work. Being a mom with a chronic illness is quite frankly exhausting! But when you add in having children with a chronic illness, it can be a recipe for depression and loneliness. Is there anything quite like being too tired to move? I mean literally, the thought of doing a load of dishes, or driving your child to an activity literally seems overwhelming. I’ve been there….I’ve dealt with the incredibly debilitating and depressing exhaustion. Where every fiber of your mind wants so badly to move and get going, and every fiber of your body is screaming I CAN’T!
Recently we have been faced with not only my illness, but two of our children having the same immune deficiency and most likely needing the same treatment for it. This treatment is either IV or subcutaneously (which I do), and will be a lifelong medicine that we will need to help prevent us from getting sick. With the impending test for my two kiddos, my anxiety and fear are mounting. I have a hard enough time mentally and physically getting the treatment myself, and now I have to administer it to my kids!?! I literally cannot imagine.
What are some ways we can help a child with a chronic illness to feel more normal?
- Don’t make a big deal of it. I try to not really talk about what is coming up, or how long they will have to do it. Try to make it seem normal. I do my best to mask my own pain when I’m infusing once a week, and I don’t tell them that I feel like a truck hit me the next day. Working to make it seem normal, and no-big-deal are really helpful, because kids adapt so easily to things we as adults, simply do not.
- Inform them about what is happening just enough to help them understand why….but not much more than that. I think it’s important to be open and honest with kids about health stuff. But that doesn’t mean telling them everything about the disease or condition they are dealing with. I will tell my two that this is to help keep them healthy and prevent infections. But I do not plan to list all of the things that could go wrong if they don’t do the treatment.
- Rewards and special treats. Since I know my kids are going to have to deal with doctor visits, blood-work and needles, I have decided to come up with some fun treats and rewards during those times. For doctor visits, I usually get a special lolly pop or piece of candy. For blood-work, some type of edible snack too. But now that we are looking at weekly infusions and some needles much more frequently then any kid should have to deal with, we are going to start doing special family movie nights, and games while they infuse. Picking fun things ahead of time that are special treats and pumping them up about it, can really help ease the anxiety of what they are having done. Maybe its a special movie, or game, or even art supplies they can only use at that time. Whatever it is, make it something your child will really want to do, and will find special.
- Don’t use it as an excuse to NOT do something. My kids like to play sports, hang out with friends, go to church, be involved in different groups and activities and I will not tell them they can’t do it, simply because I’m scared of germs. Don’t put your child’s health in danger, but don’t use the illness as a reason not to do something. When you want your child to feel normal and not like a victim or patient, its important to let them feel like other kids, and not dwell on health issues (so much easier said than done).