Wednesday, August 6, 2014

"Why Is This Happening To Me?": Helping Kids Navigate Chronic Illness

Today my beautiful, smart, strong, and loving ten year old son asked me, with tears in his eyes, "Why can't I be normal? Why is this happening to me?"

Ever since he was a baby, my son has dealt with pretty severe stomach issues. When he was nursing, all I could eat for months at one point was baked chicken, rice, and broccoli. Then when he started on solid food, he was still always sick. At one point he was diagnosed with a fructose allergy, and we were told he could not eat fruit or anything with fructose in it. That seemed to get a bit better somehow, and we went for a time when his symptoms were mild, but then he ended up with a rectal prolapse which was super scary, but after some treatment, it resolved. He still went on and on with general stomach issues until we started eating a Paleo diet for my own health, and a lot of his issues improved, but not all. We were always more lenient with him because it was unclear what was wrong with his stomach and all allergy testing and other tests came back fine so doctors told us changing his diet could not make a difference.

However, changing his diet made a big difference, not only in improving many of his stomach issues but also other things, such as sensory processing disorder. That is another story for another post though.

Even with so many diet changes and improving, he still has episodes of stomach distress because we are still working on figuring out exactly what is triggering his symptoms. Actually, he was really doing well with barely any symptoms even on a 90% Paleo diet until three or four months ago when he got what we think was a stomach virus that just completely messed up the balance in his gut. He was vomiting on and off for four weeks. Now, if we stay strict Paleo plus removing some extra things, he does pretty well. But, there are still flare ups. It seems like we can not deviate from a very strict list of foods at all, which is hard. We travel often and we try to make sure when we eat out that the food is safe, but he still gets sick anyway.

Today, all he wanted to do was go to his CrossFit class, which he loves. But he was doubled over in pain. That's when he asked me, "Why can't I just be normal? Why is this happening to me?" All I could do was say, "I know how you feel."

I do know how he feels. I have had Irritable Bowl Syndrome my whole life and lactose intolerance (which got a bit better after my pregnancy actually,) and colitis more recently due to a bad setback with my binge eating disorder. Like him, all of the tests from doctors have been completely unhelpful and everything comes back negative for any allergies. I have lived in that place of not knowing why something is happening to me. I also have all of the mental illnesses on top of that, so I know what it's like to just want to be normal. Normal enough just to be able to function half way decently in the world, and not miss out on everything you love. Something "next to normal," as the musical says.

My son asked me "What if everything makes me sick? What if I can't eat anything except what you make, and I can't do that forever. What if I never get better? What if there are only three things I am not allergic to. What do we do then?" I told him we would do whatever we have to do. We will keep working hard with health professionals to find out what is wrong with his stomach, and if he has the most limiting diet ever, then we will do it.

My son, helping make almond milk since he can't have dairy.
I could have given him the pep-talk about how no one is normal and normal is just a setting on a washing machine. I do not think that would have helped though. Really what he was asking me was, "Why can't I just not be sick all the time?" and "What does this mean for the rest of my life?" At ten years old he is questioning if he will have to always be sick, and always put his life on hold for his illness.

So I was honest and told him I have no idea why bad stuff happens, but I do know that the most powerful thing we have is each other. We can be "not normal" together. I also let him know that if if there is anything I have learned from being wildly outside the norm and missing out on a ton of life due to my illnesses, it's this:

It sucks, it's hard, and it takes a ton of work. But... you learn to be a fighter even when you don't want to be and you think you can't go on, you learn to have compassion for others and their struggle in life, you become a more empathetic and loving person, you want to help other people suffer less, and you find hope even when you are convinced there isn't any. 


Rev. Katie

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