You know the bald kids on TV late at night?…I raised one

Well she’s not bald any­more, but once upon-​a-​time she was. She had Cancer. She spent the first two years of her life in hos­pi­tals and doctor’s offices. Sometimes I for­get about it. It crossed my mind the other night when I saw a TV show about St. Judes Children’s Hospital. It has been seven years since my daugh­ter had Cancer but she still gets sick from time to time. I bring this up because if you are a par­ent, fam­ily mem­ber or care­giver of a chron­i­cally ill per­son you know that it is a very dif­fer­ent kind of life. I find myself talk­ing about ill­nesses, health care, med­i­cines and even death a lot. The rea­son is this is basi­cally a focal point of your life when you are in this sit­u­a­tion.

I was a new mother at twenty-​one and I had to come to terms with the fact that my child could die even before I was used to her being born. It was a harsh real­ity. I had no life skills, no expe­ri­ence, and no tools to deal with this. You are thrown into a life of med­ical jar­gon and options before you even under­stand what they really mean. And based on that lim­ited knowl­edge you have to make life or death deci­sions for your child.

Another side of it too that peo­ple frown on speak­ing out about is that as the respon­si­ble per­son in the life of the sick per­son you give up a lot. Many things you want to do per­son­ally become obso­lete. Not to men­tion sleep­less nights as well as you tend to ignore your own health. You look in the mir­ror and you see this tired per­son look­ing back at you. As a woman this can be espe­cially dif­fi­cult. I strug­gled for years with feel­ing like I mat­tered enough to devote time to myself. I did get over it and started mak­ing time for myself when I could.

I’m not writ­ing this, as a woe is me because I am not the one who has to be sick all the time. I can only empathize with her ill­nesses. When she was small she was com­pletely unaware of her prob­lems but as she matures she has con­cerns. This is another phase. She has had to come to terms with her own mor­tal­ity, real­iz­ing that she could have died. As a par­ent I try to reas­sure her that every­thing is okay even when I’m not sure if it is.

She was in the hos­pi­tal just last night and we came across this charis­matic young black man prob­a­bly about six­teen years old. He was at the nurse’s sta­tion mak­ing the nurses laugh and play­ing with the lit­tle kids on the floor. He didn’t look or act any dif­fer­ent from any other high school kid. Except that he was push­ing around and IV and he was bald. He had Leukemia. I kept think­ing to myself what it must be like being that young and not know­ing if you had a future. This is life for many many of these kids.

I wanted to share my expe­ri­ence because I have this is our life and my blog is the medium in which I can tell our story. When you see the bald kids on TV, that is their medium to tell theirs. Don’t turn away. Take some time and lis­ten to their sto­ries. There are real peo­ple behind them. If you are for­tu­nate enough to have good health that’s a bless­ing but can­cer is a dis­ease that there are no exemp­tions from, any­one can get it. I always tell peo­ple to look at it from this stand­point: you never know when it could be you.

Photo credit: www​.not​mytribe​.com

Thanks for read­ing,