When I was a little girl I was diagnosed with ITP. Now for a nine year old, hearing the words...Idiopathic Thrombocytopenia Purpura...you can imagine how scary it was. And thirty-one years ago it was a very serious condition. Because of it I had to have my spleen removed...at a time when most children don't even know that they *have* a spleen.
Many nights I couldn't go to sleep. I heard my parents talking softly, saying such things as:
- 'John, she is going to die.
Today she couldn't get up the
- 'Her blood today was, (some horrible number), worse than yesterday.'
- 'We are going to lose her. (Where I wondered?)'
- 'She'll be in the hospital
in one week',
- 'She will never survive the
SURGERY (I kept hoping I'd never catch it).' She may HEMORRHAGE, John,
I worried about what death was all about, and wrote such things as: 'it must be a big black hole that you fall in and keep falling and falling and falling and falling.' Often I didn't fall asleep 'til I was totally exhausted. In fact, many nights I woke up paralyzed with fear, unable to call out to my parents. Each visit to the doctor or hospital was nerve wracking. Then I got 'THE NOSEBLEED'. My nose bled for 28 hours, until I was sure I would run out of blood. My mom called the doctor several times, and the last thing I heard was, ' If you don't get here soon - she'll be dead.'
Twice I had bone marrow testing without anesthetic . It was so painful. The doctors and nurses didn't tell me what was happening, and that made it much worse for me!
I remember hearing my parents tell me that if I didn't drink my carrot juice, the doctors would have to OPERATE, and I had no idea what that meant. Well, I had the surgery even though I drank the juice, and I started school without a spleen.
Before returning to school that year, I went ice skating and broke my arm. So in the new year when I went back to school, I was tortured by kids who didn't believe I had been sick for four months, (and as far as I was concerned nearly died daily). They just didn't understand, and thought that I had just broken my arm, and that it was all a great big joke on them. They even thought they had been taken advantage of when our teacher had them send me cards in the hospital. Talk about sad! That was me...
Had my parents known that I was taking everything in and making my own sense of the strange words they were using, I am certain their vocabulary would have been much different.
My suggestions to parents, based on my own experience would be:
*Discuss with your children at their own age level what their illness is all about, and what will happen to them in the hospital. Be honest!
*Don't assume children are sleeping when their eyes are closed. If your conversations are private, take them far away from your children. Children hear everything.
*Explain the terminology. Surgery, operation, testing, etc. If children aren't told, they invent answers, and those answers are scary.
*Allow your children to express their fears, and validate their feelings.
Thanks for reading about my
childhood. I do feel so much better today!
Joan Fleitas, Ed.D., R.N.