Last night I watched a programme on tv3, It was called "Born to be Differant"
This programme was about children born with problems that I have never even heard of. I knew the names of some of the disabilities but never knew all of the symptoms. I was left in tears and in awe of the parents and their children, their courage, strength and dedication to their family.
These parents where told that yes your child will die, when we don’t know, but they where given average estimations. Some of the children on the programme all ready beat the odds and made it past the “expected average age”. How could you hear those words and carry on, their expected life span is? I’m sorry I would be on the floor and just heart broken.
This reminded me of when Mr fabulous was conceived. He threatened a miscarriage for 3 months; this in itself almost killed me. Will he live or die (inside me) that’s bad enough but to give birth, fall in love and be told he/she might live or die, well I know id die with those very words.
When I and Mr fabulous made it to 4 months we had our first hospital visit. Due to a medical condition I have for life I was told that as I failed to take my medication that my child will be born with a brain disorder. Just like that, no beating around the bush, sparing my feelings, breaking it to me lightly and gently, just well because you did not take your medication your child will have a brain disorder. I died a little that day. Ok so he was born with a brain disorder, they where right and it was true, but how it was said to me, there was simply no need. This also happened to parents in this programme.
Have doctors become so closed off to people and seen these issues every day in their doctoring career that they forget how to be human. Do they forget what compassion is, sensitivity is, feelings for other people. Do they expect that the people coming to them are machines? a number, are we just a mere cattle market auction ??
And the medical boards refuse medication on the medical card, life saving medication, refusing DCA as they have simply never heard of this illness. What is up with that, send someone to their house and see for your selves you stupid ass holes, for god’s sake, this country has gone insane.
I know a girl with a syndrome called charge syndrome. This child is my hero. I have never met her but I know all about her. If she has an operation coming up I pray for her. If she has good news of any kind I jump for joy for her. This child has had more life saving operations that you can bare to think of. She lives most of her days in a hospital, she comes home thanks to the J*** and J*** foundation a day or two a week. No thanks to the medical board as they wanted to deny her this privilege, they did not even want to pay her parents DCA as she was living in a hospital, not at home. DISGRACE of every kind.
I know my 3 children have problems, I really do. I know their problems are not mild and easy to cope with, I really do know that. But my kids can walk, ok two can talk, one cannot and might never. There is no cure or medication to improve their condition, there is just therapy and early intervention, behavior programme and tuition. I know they are healthy and will lead a happy fulfilling life; they will live a long natural healthy life, their problems are here to stay but they will get better in time.
I feel very blessed that all i have to worry about in this life is autism and adhd. I feel very firtunate that all thats been thrown at me is this cause i know as much as im able for this, i would not be able for anything more than this. I cope very well, but somedays i just about cope. I feel very fortunate that my kids problems are so miminal compared to what other children have.
My children do not have a life expectancy limit, they do not have respiratory illnesses, they do not need life saving medication, surgery to repair failing organs, and they do not need to replace their organs or add a missing one. They are healthy and able.
I would just like to say that every child out there with these syndromes that cannot be cured and that have a life expectancy age limit, you are the real heroes in this world. The surgeries you have had, the transplants, the daily injections, the daily battles, medications, painful therapy etc, you are amazing and so are your parents.
(dedicated to Megan, a true angel in this world, you are my hero xx)
