Dare i say ive sacrificed my normal life? as a parent of a chronically ill child? controversial :/ i don't mean this in a bad way

 I am not an activist! 
Given the
chance i would be at the top of my career right now. In my own
studio producing hilarious cartoons, id be writing and illustrating children’s
books. Producing advertising slogans and characters to match.
 Id
write a series of funny cartoons which would probably get their own tv
show.  I’d be laughing all day. I’d have colleagues, we would
have great christmas do’s and social catch ups. 
And i
would defiantly have a coffee machine!  Further more i would be at the gym
3 times a week  and still be home to pick my kids up from school.  
            I know this because although my
actual ‘working career’ was short i managed to work my way up to a managerial
position with my own lab and 5 staff by the time i was 21.
 I
had goals. 
Give me
the the 20 years since then and i’m quite sure i would be at the top of my game.
 I’m
not saying i’m an un for filed failure or anything i mean i’ve managed to
create my own job of being a freelance illustrator.    and have done
the best i can. I have just juggled being an artist with being a
full time carer and worrier of my Molly.  I would never swap my life
for all the tea in china ! just so you know. 
I was 24
when i had moll. Evidently from the moment she was born my path Was mapped out.
A different path to which i had planned.  She was sent to me
see  because i am sure I’m the only human being in this universe who is
able to truly give her what she needs. And this is how many special needs
parents feel. Its a maternal thing. 
I know
what she needs i always have done. Just one example of many. I knew i had to
keep her warm. 
When most
mums would take their babies out in a summer dress and cardi, mine would
have a fur coat on and a blanket. I didn’t really care when people
looked at me as if i were a bit over the top because i knew even then that moll
had body temperature  regulation problems.
 She
would always always get poorly if she got cold, every time. 
I told medical professionals this time and time again. Turns
out age 14 she has no thyroid function. 
Following my request (at 14) for her medical notes
we saw this was flagged up from her new born screening test! but nobody told
us.   
Anyway i digress .  Like i said I’m naturally not an
activist!! (well may be just a little bit).  
When moll
was finally diagnosed after 14 years. (14 years of being poorly every 3 to 4
weeks) sometimes very poorly. I had been alone . No one really knew what
was wrong   with her. I had no one in common to talk
to. All my friends were going off on their different career paths when
their children were at school. But i had to stay at home . I mean who would
employ me ?    I would need time off for Molls hospital
appointments. Every 3 to 4 weeks i would be off for at least 2 and a half weeks
while i put molly back together. Id be called to the school numerous times
because moll would be poorly. And apart from the time off i would be totally
shattered from the effort of physiotherepy, worry, no sleep and hospital
stays. Probably not making
the best employee.
Seriously what is my point here? 
Ill tell you. 
I was not expecting this. I have been thrown in to this life and i make the
best of it. i do not want anyone’s sympathy ! I’m very happy. I live in the
country I have a lovely home, my husband is my best friend. My kids are
all amazing. We all laugh a lot we have a great life.
 Despite all of the terrible stress and worry of molly’s illness we are
the happiest family i know.  
So to
sacrifice my life as an individual human being with a career. The feeling of
being a worthwhile achiever on this earth and all that comes with
that may not seem that hard, because i do have everything. 
 Personally though
it has been hard for me, i’m a creative, i feel i have a lot to give and i
enjoy what i do.
Give me a
healthy molly and i would have had all this, no questions.  
Given the
choice though id sacrifice my soul to do it all again than not to have
had her at all.    
 
         So I just do what is right
now.   Since molls diagnosis i’ve had a whole underground world
opened up to me. Its a world where children and adults are dying because the
condition she has (adrenal insufficiency) is not managed competently.
          The
medications have not changed or progressed in 50 years. Research is not given
the money it deserves because it is rare. The lack of Awareness is
dangerous and it is costing lives.
 This is why I have started an active campaign  to change it.
  
Given the
choice.
Do i want
to do this?  
No. 
Do i get paid for this?
  No. 
Do i mind
when someone messages me at 2.am because they are terrified they will lose
their child to this one day. ?
No. i
give them 100% attention and my time.
Do i want thanks for the hours i put in researching this?,
making
awareness posters?, sending information packs to schools/ ambulance stations
and gp’s surgeries?
 
Making individual awareness profiles? 
Organising
a worldwide picnic each year in the hope that one day people will be
familiar with the event? 
No i
want no thanks.
Do i want
praise for the massive leap in getting new a medication to the stage of near
completion?.  
NO
Do i mind spending hours just talking to people and trying to
help them with school problems, family and work problems? because
literally no one understands the seriousness of this.
NO NO NO 
I want to do this, i am honored to do this.
I do this because i know how these people feel. We have a great connection. We
are like a family.  I was so alone for 14 years with no one in common to
speak to.
 
          I now see massive injustice in this
endocrine world and i cannot believe how terrible it is.
 I’m
not an activist i am a human.
 Anyone
in my position would feel the same . 
 I told you the life i want is far from this id do
anything for a bit of peace and a stress free life, but this is not right
and i will keep shouting until we are heard. 
Finally do i want criticism?    
My final answer 
NO.
I want nothing in exchange for any of this. But I don’t want busy bodies
pointing out the odd spelling mistake to me on a post at 2am (i get no
sleep this makes it worse). 
Spelling is the last thing on my mind. 
I don’t appreciate jumped up health professionals looking
down at me like I’m some kind of bored housewife pain in the ass. IM NOT BORED
Jeeezus i have literally no spare time.
 I’m simply a mum whose child has been ill all of her life. I
repeat I DO NOT CHOOSE THIS JOB!  I just want change. For Molly and for
everyone else with her condition.
And when Molls is better. Good Change has been made ill
retire.
Just watch out for my cartoon on a tv near you when this has
happened.  
 It’s been a life sacrifice and If it’s the
last thing i’ do. Something good will come of it.