Saturday, 14 July 2012

My Life With Autism

Thank you to Cara for sharing more of her journey with us, this is a moving account: 

"Rewind 12 years, I'm pregnant with my first child, terrible pregnancy, sick from day one even and sick in labour. I lost nearly 4 stones in weight, thought I was dying, horrendous 47 hour labour, high forceps delivery, NEVER AGAIN... although Megan was the most amazing thing I had ever seen and the love for my first born...there are no words.

Fast forward 2 years 9 months and I am BROODY! So we decide to try for our second, WOW, within a month i'm pregnant... delighted but terrified... great pregnancy, no sickness everything going well. Quick labour at 36 weeks, so fast I'm only in hospital 25 mins when Daisy arrives. Text book delivery, they lay her on me then all hell breaks loose, she's floppy, not breathing, they take her and run, 2hrs of torture follow before a consultant comes and utters the words "I'm sorry your baby has a Congenital Diaphragmatic Hernia, we don't expect her to pull through". COMPLETE AND UTTER SHOCK... I WANT TO GO HOME...
My little fighter survives the odds and had 2 major surgeries before she was 10 days old before being transferred to Yorkhill Hospital (Glasgow) for ECMO. She survived, then survived organ failure followed by 12 weeks on life support, dialysis, septicaemia ,transfer back to Sick Kids in Edinburgh and then another 5 months in hospital. We got her home on oxygen and tube feeds aged 7 months 2 weeks, WOW we made it! Lots of meds and appointments but we are a family again.

Fast forward 12 weeks and we're back in hospital battling again. Poor baby, she has been through so much and spent her 1st birthday in hospital. 

10 days later we had to make the hardest decision ever - to let her go...


MEGAN - that's why we go on, our reason.
NO MORE BABIES FOR US. So I'm minding my own business getting on with life as best I can, looking after Meg and Gary, plodding on in a daze. I feel ill, and put it down to stress. It must be...

Then I feel a familiar feeling in my tummy... movement...NAH wind.... 

Hmmm...maybe need to do a test... IT'S POSITIVE..OMG... how far on am I? Then scared as I know I've not had a period for 5 months, but thought it was stress...eeek!

So our little rainbow was on her way... apprehensive, very excited... oh yes, my arms were empty, I needed her.

Nov, 1 year and 4 months after Daisy, Ruby made her grand entrance. A beautiful healthy little baby and I was taking this baby home... beautiful Ruby, named after Daisy's birthstone PERFECT. 

Hubby kept saying, "are you sure she's ok"? She's fine I would say. He said "she's blind she doesn't look at things", I dismissed it. Then she wasn't meeting her milestones, didn't talk, didn't walk til 22+ months, time to seek advice from my wonderful health visitor.

I already knew Ruby was autistic, I just knew. Referrals to SLT and child health followed , diagnosis of autism was quickly given. Now I feel isolated, I didn't feel sad or angry though, I felt relief. I never have shed a tear over her diagnosis, I'm just relieved she is healthy, I can't mourn my child who is living I just feel grateful shes mine. 

I do find it hard being in this situation, I know I'm controversial but actually there are worse things than autism. My baby is 5, non verbal has violent tantrums and gives us what for but I'm actually at peace with my lot. 

Sometimes I wish for a normal reaction to the trials of autism, I'm not hard, I fight for my girl with every part of me it's just I don't seem to feel the devastation of it all... 

I worry one day it'll hit me...I hope not."

No comments:

Post a Comment