Just want to know is this what really goes through your head at times. My little one has it, he's only 2. I don't know what goes through his head. But sometimes he's fantastic, and other times he's really grizzly and angry and I often think it's not just the terrible two's, but that he's really feeling that bad. Was i wrong to bring him into the world, because I knew he'd have it? I'm trying to be strong but i'm dying inside. He's had trans(fusions) for a year and a half, and desferal (daily injections) for 4 months and they tell me the desferal isn't working and I don't know how much of this shit i can take either. Different if it were working, but its not. I"m putting him through all this pain and it still isn't working. I don'[t have it, i don'[t know how he feels, but as a parent I don't know how much of this i can take anymore.
(The italics are mine)
...and one of the responses...
I know how u r feeling Stella.
My name is Isabella and I am mother of three beautiful unique children two
of which were diagnosed with sicklecell beta thalassaemia ten years ago. The
youngest was tested at birth and is a carrier of sicklecell anemia. We were
told by the first DR that the children would only live to the age of five.
Then the next DR told us that with blood transfusions they would live to the
age of 10. The next DR said they would never require transfusions that they
would lead a normal life. Aargh did anyone know anything.
My husband and I were both devastated, angry, in shock and we grieved for a
long time. It felt like someone had ripped out my heart from my chest and
then it had been run over by a semi trailer. I felt helpless. Helpless in
not being able to fix what was wrong with my children. Why me? For goodness
sake why my babies? They never hurt anyone, they dont deserve this, they are
only begining their lives. Why?
This a forever thing. Which took me a while to get my head around.
As the doctors we met were in consistent with their knowledge I decided it
was time to inform myself as much as i could about sicklecell thalassaemia.
I surfed the net, read books, anything i could get my hands on. I looked for
support groups, I was just trying to find someone out there that could tell
me what i needed to know. Find some support. Find information. Find a
shoulder that would understand exactly what i was going thru.
I found one thing that helped me more than any DR, website, book or brochure
could. I found the most extraordinary, wonderful human beings which are my
heroes that you could ever meet. I met Adult patients with Thalassaemia
major and with sickle cell anemia. Normal people i might add who have a life
long chronic illness and were leading a somewhat normal life. They were well
educated, had great careers, some were married and even had children of
their own. I thought WOW this could be my children 30 years from now.
Leading and living a great and spectacular life. Yes they will have hurdles
but we all do in one way or another. Not only did i find out all that i
needed to know but i found HOPE once again.
You know what Stella, i soon realised that i cant fix what is wrong with
them physically nor can the DR. They can be treated for their illness and as
long as they are compliant they can live a great life if we let them. By
letting them be all they can be. By giving them a great life style as
children, as people. Allow them to be children, sleep overs, playing with
friends, listening to them, telling them stories, playing outside, playing
sport etc...
Yes there is so much they do feel and think about that can make them be sad
and be angry ...But there is also things they feel and think about that can
make them extremely be happy too. Just be there for them. Listen to them,
they get to know there body better than you or me, better than any health
professional will. Talk to them like the people they are they do pick up and
know more than we give them credit for. My children could say sicklecell
thalassaemia better than the healthprofessionals could at a very young age.
I have always been as honest as i can be with our children about their blood
disorder, about their treatment and have always encouraged them to ask
questions not only to us but to their treating doctor. Even at a young age.
Sickle cell thalassaemia is a part of who they are and who they will become.
They are now F12yo, M11yo and F9yo. The eldest two children require Blood
transfusions every four weeks forever. They also have desferal as well as
ferriprox and wheatgrass.
Guess what Stella, I have great kids, they are strong, brave, passionate,
understanding, compassionate, honest, kind, caring, loving, happy, funny,
intelligent, confident children. They sometimes argue as brothers and
sisters do. They sometimes drive me crazy like normal children do. They make
me cry and make me laugh.
I am very proud and privledged to be their mum.
Stella if you ever want someone to talk to i am here for you when ever you
need me.
I wish i had another mum out there for me. So if u ever wanna chat cry laugh
what ever that it is you need i am here for you.
Bella
Queensland, Australia
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for Health Professionals