Right this minute, I am sitting on my couch, directly across from my 13 year old son, who is asleep in a recliner. We had a tough morning. It started out with me nearly dragging him, bodily, out of bed. Putting him into the bath, to which he promptly started crying because he pooped in the bath. So I got him out, let him finish pooping in the toilet and then put him in the shower. After he was washed and rinsed, I helped him out of the shower and put his clothes out on my bed and went to the kitchen to make his lunch for school. When I returned, he was once again sitting on the toilet, pooping again. You might think that it’s obvious that he is sick. But it’s not. This is a pretty normal morning ritual for the two of us. James has Down syndrome, however; Down syndrome is the least of his worries most days. James also has severe “Non-Specific Colitis”. Unless you know someone with NSC, I’m sure you are thinking “what the hell is that”. Well, that means something is wrong with his intestines and colon, but they don’t know why. For us that means, James has horrible cramping and diarrhea anywhere from twice a day to 25 times a day, and …. There is no successful treatment, because there is no known cause. Oh, we’ve tried medicines, but nothing has helped. In fact, most of them make it worse.
So there James sits, on the toilet again, looking and feeling absolutely miserable. But I still didn’t know he was sick because, again, this is pretty normal for him. He got dressed, grabbed his lunch and back pack off the table and off we went, in a mad rush, to my school. Once we got to my school, I noticed he wasn’t his usual perky self. Normally, after he has cleared his bowels in the morning, he feels much better. But not today. Today he looked pale. But he didn’t complain. He just rested his hand on his belly and walked into my school to wait for his bus to come get him and take him to his school. I watched him for a minute and asked him if he felt bad. As a single tear rolled down his cheek, he said his belly still hurt. Well damn. I took him into our school office and took his temp.
No such luck. Within an hour of getting to school his teacher called me and said she believed he was sick this time. I made arrangements with my school and left to go get him. He was waiting for me in the office. Tear stains were visible his cheeks. Sigh. My boy. He is such a trooper. I know he’s hurting, but he doesn’t often wail and scream and cry like most people do when they are this sick. Just a few intermittent tears that roll down his face. That’s not really a good thing in my book. Sometimes he is severely ill and burning up with fever before I even know he’s getting sick.
I put my arm around him and we walk out to the car. He slides in and when I got in I asked him how he was feeling. “My hair hurts”. That usually means fever.
We had been pretty lucky with James this year. He had only been really ill a few times up until last month. We’ve had years with many illnesses and several surgeries, so I count this a good year for him, virus wise, so far.
But, there are those times when lots of little things come our way and it gets to me. Stuff piles up, and not just stuff with James. Stuff with the world. Stuff with my other kids, with my parents, my brothers, my best friend’s families. Stuff that gets overwhelming and brings my humor to a screeching bloody halt. Then the depressed, lifeless bitch comes out to play. Yeah, she’s here today. Unfortunately, she is writing this blog post. You probably won’t like her.
This round started in August. I was diagnosised with a badly torn rotator cuff and have gone through some unpleasant stuff (you may have already read about that) in the last two months, but at least one of my kids wasn't hurting. Then four weeks ago I noticed James couldn’t hear very well anymore. A visit to the ENT confirmed that he’s got some issues with his ears…. again, and will most likely need another ear surgery. Because obviously 7 ear surgeries aren’t enough to fix the problem. Around that same time his eye doctor diagnosed him with an odd problem with one of his eyes that is causing it to droop. Might need a surgery there too if it gets any worse. Super. Then two weeks ago my husband got hit with the government shut-down. Yeah, that put a kink in my chain. But we deal, we move on. Then I got sick. I caught the sinus plague. Head completely stopped up, nasal passages swollen closed, snot coming from any place it could. This of course developed into a sinus infection, but lucky me cannot take antibiotics. No, I just get to wait it out. For two weeks I have gargled more salt water than the
As I lay in bed tossing and turning, I started thinking about James and how he works so hard to try and do what others accomplish so easily in life. All because of some damn extra genetic material on one freaking chromosome. A memory came flooding back from last year, as it does so often. A memory that I hate. James was 12, and sitting at our kitchen table with a homework sheet from math. Easy math, like 7 + 5 = 12. He stared and stared at the problem for several long minutes, rubbed his eyes, then looked over at me with the saddest watery blue eyes and said “I’m so retarded”. Without question, one of the worst moments of my life. It’s been more than a year and I still cry every time the memory creeps back in. Which is unfortunately very often. Where did he hear that word? Who told him he couldn’t do math because he was retarded? We certainly don’t use that word in our family and don’t tolerate anyone else using it either. I dreaded this day from the very moment he was born and there it was. Twelve years in the making, my child finally had a hideous diagnosis for himself as to why he couldn’t do what the other kids could do, even though he tried so much harder than they did. Someone had told him he was retarded. I pray that my heart will never suffer another blow so devastating as that one. I’m not sure I could survive it.
And now we are to this morning. After James got on the bus, but before I got the call to come get him, a co-worker came in and told me that one (or more) of the other co-workers had insinuated that *I* had hurt the woman’s feelings who used that ugly word the day before. SERIOUSLY??????? I hurt HER feelings??????? By telling her that word was ugly and not ok? And asking her not to use it? Really????? Reeeeeaaaallllyy? Yup. The bitch is in people. She is in and she isn’t going away for awhile now. After the bitch slipped quietly away and had a little cry in a private bathroom at the school, she came back to hear that her child’s school had called her to come get him. Sigh. Yeah, this is going to be a rough month. Is November here yet?? I should probably hibernate until then, but unfortunately, I don’t think many employers would recognize mental fatigue as a valid reason for missing two weeks of work. Until this passes I’ll be like the little engine that could…. I think I can …. I think I can…… I think I can…….