I am re-posting this from 2 1/2 years ago because today it got published on The Mighty as part of their series If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? Some great articles have been posted and I am just a little bit chuffed to be included.
If I knew then...
That Ashlea would need a kidney transplant.
That she would have multiple disabilities.
That our lives would never be the same.
Would we have done things differently?
I'm sad to say that we may indeed have done things differently. If we had been told before the girls were born that Ashlea was going to have cerebral palsy, a vision impairment, an intellectual delay and kidney failure we would have assumed that she would have no quality of life and we may have requested she not be resuscitated at birth. Or if we had found out that information in the first few days of her life we may have decided to withdraw care and let 'nature take its course'.*
But we didn't know.
Thank God we didn't know!
What we also didn't know is how wrong we were to assume that someone with a disability would have no quality of life.
What we didn't know was that having a child with serious disabilities would be a blessing.
That we would love Ashlea just as she is.
That she would help us see what is really important in life.
That we would be OK with not getting the 'fairytale ending'.
What an eye opener it has been to live with Ashlea and her disabilities We possibly would have made different choices if we had known - but we would have robbed ourselves of the joy and the delight that is Ashlea. We would have robbed ourselves of the chance to have our eyes opened, to see what is really important in life.
Even if someone had told me back then that I would have a child with severe disabilities and that I would be OK with it - it wouldn't have helped because I WOULDN'T HAVE BELIEVED THEM.
Some things you have to learn by experience.
Thank God we didn't know.
* I know this is a hugely contentious issue but as a 570gm baby requiring full life support and in complete renal failure it was presented to us as an option.
(linking with Ellen Stumbo}