My thoughts on a page.

Todays repost comes from the Blog Embracing Wade, written by the mother of Wade. Wade was born with Down Syndrome. In her answer as to why she chose this post to feature in my repost series, Wades mum wrote, “In my mind, this post was the one that tied together all the thoughts I had during my pregnancy when dealing with the knowledge that the baby would almost certainly have Down syndrome.  I imagined it to be the ah-ha post that made people truly understand what I was going through”.  

Thoughts that got me through.

My pregnancy was definitely a roller coaster of emotions where I questioned my resolve, my decisions and my sanity every time I got a new test result. But right from the beginning, all the way through till now, I had reasons why I didn’t want to test for Down Syndrome. This post is not about what I think everyone should do, it’s about what I did and how it helped me get through the turmoil of prenatal diagnosis. Even though there were ups and downs during those 9 months, by the time Wade was born, I was ready and happy and waiting there with open arms to meet him whether he had DS or not and if any of my thought processes help other women in similar circumstances then its achieved its purpose.

From the outset, I want to say that I am not fundamentally opposed to abortion. I believe in a woman’s right to choose. Everybody’s circumstances are different but I feel that we have a huge responsibility to think about it carefully and get as much information as possible. For me, it was important to “go there” in my mind on both sides of the argument. For me, considering all of my options and really thinking about it meant the right decision for me was so much clearer. As I contemplated my options, the right path to take kept leaping out at me. I chose to keep my baby and these are the reasons why. o

When I was considering whether to have the 8 week blood test done, I felt that it was unnecessary. I believed that there was nothing “wrong” with people who have DS. Of all the awful things that could happen to your child, this was, by no means, the worst.
I thought about a little saying I often see written on inspirational posters and used by advertisers who try to convince consumers they are expressing freedom when they purchase their products!

Dance like no one is watching
Sing like no one is listening
Work like you don’t need the money
Love like you’ve never been hurt

(Yes, I’ve looked up the original quote and it’s not the same as this but these were the words that were in my head at the time)

My idea of people with DS was that they were living this quote while the rest of us spent money, time and effort on therapy and self help books trying in vain to achieve it! I may have been ignorant to the challenges that lay ahead, but my heart was telling me that it was ok, and we can do this.
It also helped that I was comfortable with the idea that my child doesn’t have to be the biggest, the first, the smartest or the richest. I am not driven by those goals in my life and I live a happy life. My desire for a simple, honest existence doing noble things definitely contributed to my view that DS was not a death sentence. It’s not a tragedy if my child never grows up to be the Prime Minister or a lawyer or doctor. I realised later in life that I love being a waiter. I’m not going to be a neurosurgeon or live in 50 room mansion. My life is no less worthy of living because of that!

I looked at raising a child with DS as trading one set of difficulties for another. On the one hand, my child may struggle with communication but at least I’m unlikely to have to worry about him doing burn outs in the front yard with a group of yobbo friends drinking cans and being revolting. He may live with us well into his adult life but then again, lots of children in their 20s and 30s still live with their parents these days! He may struggle to find love and marriage but I know plenty of people who have never found “the one” living happily in singledom and no one thinks their lives are without value or meaning.

Secretly though?…. I have this grossly stereotypical idea in my mind, but if I end up walking down the street hand in hand with my son for the rest of my life, I’ll be a very happy old woman.

These days there is no reason Wade can’t live independently, have a job, study, have friends and interests, even get married if he wants to, but if he doesn’t end up with all of those things, then that’s ok too as long as he his happy.

Another reason not to terminate was based on the idea that if I terminate this child in the hope that the next one is “better”, what do I do if the next child is born with a condition that doesn’t come up in antenatal testing such as severe autism or a terminal illness. I wouldn’t “terminate” after birth so how is terminating at 20 weeks any different? I couldn’t separate the two. I just had this feeling that you can’t keep terminating till you get the perfect child because that perfect child could just as easily fall down the stairs at 2 years of age and be severely disabled for the rest of its life. It could develop alcoholism, mental illness, an exotic disease, or just be a horrible person that no one like being around!!

I think people set out into child birth with the notion that this baby is fresh and new and perfect. That it is capable of infinite possibilities so if anything goes wrong during the pregnancy or birth then it’s a step backwards from this idea of perfection. Anything can go wrong with any birth or child, at any time, for a multitude of reasons. Rather than being terrified by this possibility, I used it to look at my decision making rationally. I understood that, in nature, not every baby makes it. It’s harsh and cold but realistic and strangely, it was helpful. I decided that if anything went wrong with this child, that was not of my doing, then we would deal with it as best we could but I would not have a hand in whether this baby lived or died.
I can’t honestly say for sure that I would always make the same choice if the circumstances were different in the future. What I CAN say for sure, is the decision would never be made because of fear of the unknown, ignorance of the facts or a lack of belief in myself that I am capable of withstanding challenges.

Having the perfect number of chromosomes does not guarantee a perfect child. All parents worry about their children, and will face challenges and difficulties with them through out their entire lives whether they have DS or not. What I learned during my pregnancy and the first year of Wade’s life is to have courage to face difficulties and come up with solutions, to have faith in your kids abilities and never, ever underestimate them. Embracing the new normal can lead to a life full of unexpected joy. I felt that everything was going to be ok, I just couldn’t have known how much I would love this kid and how much happiness he brings to me and everyone he meets. How funny he is, and sensitive and how much wisdom there is in those big blue eyes. Or how much he would change me for the better.