Monday, October 15, 2012

If I Knew Then What I Know Now... {Writing Prompt}

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}

16 comments:

Shasta said...

Thank you. This is wonderful.

Missy said...

Alison,such an honest post. It is certainly hard to say these things out loud. IT is a hard question to answer, would we do things different.

I think we would all be lying if we didnt think about the what ifs and if onlys about our children and their disabilities.
Or about letting "nature take its course."

We would all be lying if we didnt say we want a healthy baby or a child without disability.

I recently wrote how I struggled with the thoughts and that while my husband would rather have MM with a disability than without, I wasnt sure I felt the same.

I think as parents of children, born very early and very ill, when they are born, it is so hard to say no to anything, because that baby we had dreamed about, wanted and wished for was right in front of us, in the humicrib.

I also think we are unaware and have no idea about the world of disability that we are about to enter into either.

You are so right, I am glad that we didnt KNOW these things because our beautiful children have taught us so many life lessons and given us countless gifts.

I agree with you, I cherish the milestones, I smell the roses, I am okay with not having the fairytale I imagined, as my ending is so much better.

I agree I do see what is important now and I have let go of those who dont.

I think also you probably NEVER EVER imagined that you would be able to cope with all that entails with having a child with multiple disabilities....yet look at you now. I know I NEVER thought I would be okay, that I would accept the diagnosis of cerebral palsy, yet here I am embracing it.

Thank you so much Alison....your honesty, your thoughts let me know that I am not alone. I know many people would ask themself the same question.

Missy said...

PS Sometimes I am also sad that we now KNOW too much :(

Deb said...

Beautifully said, Alison. On ya!

Big brother, Little sister. said...

Perfectly put and indeed she has changed the lives of many. Oh and I struggle with having had the turn off machines question when coop was small, it makes me feel sick :( x

macarisms said...

Loved reading this. We too quickly assume that quality of life equals ease of life. It's not so.

Ellen Stumbo said...

Alison, this was beautiful, just beautiful. What a powerful, honest, real message. Could I share this on my other blog?

Sandra said...

I don't know if you've read any of Stella Young's blog on "Ramp up'? She writes confronting and provoking pieces
. The one from last week links with what you are saying
http://www.abc.net.au/rampup/articles/2012/10/09/3606293.htm
There is also one she wrote about Peter Singer which also may be of interest, also has a great link in it to an article by Harriet McBryde, an American disability advocate.
http://www.abc.net.au/rampup/articles/2012/08/15/3568157.htm

Alison said...

Of course you can Ellen!

Anonymous said...

Well written Alison. I remember after my twins were born (identical, born at 33 weeks, no health concerns whatsoever, then a diagnosis of PVL -brain injury, cerebral palsy, CVI, epilepsy at 9 months. She is non-verbal, in a wheelchair with head support, needs assistance for all needs and activities) I saw a child in a wheelchair and looked at her mother and thought 'I don't know how you do it, I certainly wouldn't cope with that'. How wrong was I! My family inspires people every day just by being a 'normal' family. We are not victims, I am insulted in people feel sorry for us. What you see if what you get with us, and I know that is rarely the case with most families. I didn't even learn my daughters were identical until we had them tested at age 6 (now 8). I went from perfectly healthy 'normal' fraternal twins to identical twins one with very special needs. She makes me smile every day and brings love that other envy.

Tasmanian said...

Thank you.

jessica crawford said...

Wow! what an honest post and thank you for sharing!

Danya Banya said...

What an awesome post. Ashley is beautiful xxx

The Trousdell Five said...

Oh my gosh Alison, I absolutely love this post. So honest. We trusted our doctors whole heartedly and right from birth, they told us they would advise us if they thought care should be discontinued on either of our boys. When Asher was SO sick, and then we found out about the severity of his brain injuries, one of the first things our doctor said was that he did NOT think we should discontinue care. But what if he would have said the opposite? A different doctor very well could have, given how dire the situation was at the time. (A nurse - totally out of line - asked me if we had considered a DNR). And what if we had listened? I thank God every day for Asher and cannot imagine my life without him. Thank you so much for writing this post!

ferfischer said...

I've been meaning to comment on this, but I loved it. Love love love. thank goodness we didn't know is right.

Tat said...

Beautiful post xxx