Disability, Downsizing And Hope

Next Tuesday my son will see a specialist in Crohn’s disease. In the past two years, he hasn’t responded well to any of the medications he has tried, so surgery is the next logical step. He is so tired of being sick that he wants to try it. I’m hopeful. I’m also terrified. He is 16, but he is still my baby.

This illness has changed me – because it has changed him. Helpless isn’t even the word for how I feel watching my son, only 104 lbs. at 6 feet tall, hurting whenever he eats. The surgery gives us a little hope. Hope for some relief. Hope that someday he will be able to have a normal day out in the world, working and being happy, taking everything for granted like the rest of us. But we have to take small steps to get him there. Just this week, I started the application process for him to receive SSI disability benefits.

He isn’t going to school anymore and doesn’t miss it. He claims working with a tutor decreases his stress level, and I believe him. Crohn’s patients do not respond well to stress, which will often cause a “flare-up.” That basically means a lot of cramping and pain. He is too tired for a regular schedule, anyway. Crohn’s comes with a host of symptoms, including extreme fatigue.

My son sleeps a lot. While my husband and I work all day, he sleeps. He will eat some rice and take pills. Maybe he will do some school work, and gets on the computer for awhile. If he feels well enough, he may go outside or empty the dishwasher for me. Eventually though, he always goes back to bed. His days are broken up by constant pain, meals that often cause cramps, taking medication, bouts of nausea, other bodily functions and naps. He manages to get his school work done, but always seems behind. It is no wonder.

Every day, when I leave for work I feel guilty, wondering where my priorities are. I curse a system that makes me work, not for money, but for health insurance. On our own, no matter much money we had, we couldn’t afford Crohn’s disease. And a mother shouldn’t have to be away from her sick child just so he can get better. It is a twisted paradox. It is just wrong.

Meanwhile, the downsizing at work is hanging over me, weighted down by inefficient management rife with uncertainty. First, we heard we might close in November, then it was January. Now I should have a job until March. I could have learned to love the job, but morale is low because it is coming to an end. And while I don’t let myself like it or hate it, I am there for the duration. The carrot of a bonus dangles in front of me.

This is a blessing because I have a few more months of great health insurance rates. It is also a curse because I can’t move on. Looking for another job is impossible when you have no time to interview and can’t even say when you can start.

I’m not even sure I want another job…I know I NEED one, but I can’t think about it. I already spend my work days completely distracted. My son is sick. What if he has surgery? What if he doesn’t? What if he needs me? My husband’s health insurance is expensive, but affordable. It will be there when my job ends. That is the only thing that is certain, and I’m thankful for that.

But everything else is a huge question mark.