Welcome to my normal...

I hate leaving the house. I hate going grocery shopping. I hate the mall. I hate it with.a.passion. I see you normal people, with your normal families, with your normal lives. It all reminds me of how different he is. He's so different that his body takes so much more calories than yours does. He's so different that at 21 months he still fits into a 0-3 month shirt. He's so different that doctors and therapists are his friends...he has no "real" friends his age. His play mates are his brothers, for fear of being around "normal" will bring "normal" germs around, normal germs that would "normally" not do much but cause a runny nose for a "normal" kid. But he's not "normal". Instead he eats differently, speaks differently, acts differently, plays differently. But he loves the same.

I hate his life. I hate it for him. I hate him being labeled as "medically fragile" or "failure to thrive." He hasn't failed anyone...he's succeeded beyond belief. A preemie, with Chronic Lung Disease, caught Pertussis and survived. A soldier indeed. He didn't fail, instead he beat all odds. I love his life. He has brothers that dote on him, love him, teach him, adore him. He has every toy made in the world. Caring doctors. Loving parents. A beautiful home. Safety. He has life. Why such an oxymoron?? Can't he have it all?

It's days like that that I hold in my tears all day long until the last of the boys gets to bed. I can barely make it to 9:00 pm without breaking down, but I have to hold it in. Just until they all fall asleep. Then to the safety of my blog. I can admit that I hate my sons life. If I could switch places with him, I would. If I could send this disease to anyone but my own son...I would. No one would be safe. Not family, not friends. No one. Is this my breakdown? Is this where I cry out to God and ask Him to carry me because I have been beaten beyond the point that I can handle?? All the fighting in the world has me drained...what else do I give when I can't find the strength to get myself up in the morning. But I have to. I have to for him. Where do I find the strength to give my child drugs that could cause so much harm, yet possibly do so much? Where do I find the strength to see my child in pain, but know that beyond this pain may be solace...if they can figure it out??

So I confess. I hate normal. I hate not being able to be normal. All you doctors...I HATE YOU. I hate you hospital. I hate you specialists. I hate you medicines. I hate you feeding pump. I HATE YOU G TUBE. I hate you all. Yet, I love you. I love you because you give my child life. Without you, he wouldn't be here.