When your worst nightmare becomes your reality.

When your worst nightmare becomes your reality.

Trigger warning. This article talks about abortion x 

I’ve needed to write about this for a little while now but I’ve been avoiding it. Writing helps me process, it makes me think about things I don’t want to think about, it was a big reason why I started an online community in the first place. 

Our lives are full of life-altering moments. Some you can pinpoint exactly when they occur and your life will never morph back into what you considered normal again. Others are more subtle, a gradual change that you don’t even realise it’s happening until one day you look back and don’t recognise that person.  

A couple of months ago I realised just how much my once uneducated, narrow minded and ableist perspective of the world has changed when a brave Mumma reached out to me as she had found out her unborn baby had the same 2q13 micro-deletion as Pippa. If you are unfamiliar with Pippa’s story, you can catch up HERE.  In a nut-shell, 2q13 micro-deletion is a rare genetic condition which means that the person is missing a microscopic piece of genetic material on their number two chromosome. Some individuals are significantly impacted by this, others don’t even know they have it. 

This Mummy reached out as she was trying to make the decision on whether or not to continue with her pregnancy. She, like me, had trawled Google for any information she could find on this little formula of letters and numbers to try and learn what it meant for her unborn baby. Also like me, she was met with limited information but what she could find was nothing short of petrifying. Possibilities of autism, intellectual disabilities, global development delay, weeks of hospital stays screamed at her from the screen. Also the fact that mother’s who have children with disabilities are 80% more likely to suffer from anxiety and/or depression. To be frank, everything out there for parents in this woman’s situation is fucking terrifying. I at least had the comfort of holding my baby in my arms as I read this information which removed a lot of the “what if’s” because to me, she was imperfectly perfect. In the end, this Mummy made the decision to do what she believed was the best thing for her family and end her pregnancy. 

I am 110% pro choice however I would be lying if I said that I didn’t spend most of the afternoon hiding in my ensuite crying. Sobbing if I am really honest. Not because of her decision, that has nothing to do with me. It was the fact that this exchange made me stop and think that if I had been in her shoes, pre-Pippa, prior to being thrown this gloriously messy curveball, I might have done the same and THAT brought a slew of emotions like shame, guilt, confusion and even disgust. 

You see I am currently living what I would have considered my worst nightmare 20 months ago. I have a child that isn’t “healthy”, a child that is not following the “typical” developmental milestones. Instead I have pages of medical notes, a disabled parking permit, a NDIS plan, oxygen tanks in my garage, feeding equipment and a diary full of endless appointments. 20 months ago I too would have seriously contemplated terminating my pregnancy based on the information available to me. The fact that my baby would be born missing 17 genes on Chromosome 2. 17 genes out of thousands and the POSSIBILITY that she would have been less than perfect. I want to hang my head in shame. 

I have absolutely questioned why me, why us, why our baby? I have thrown pity parties with the only attendees being wine, sorrow and at times despair because our society portrays having a child with a disability as quite frankly the worst thing that can ever happen. Did you know the stats are 1 in 5 kids in Australia alone are born with a disability? Yep 1 in 5! Its more common than we care to acknowledge however there is SO much doom and gloom. What if this Mum had of read information saying Yes its different, and yes it is hard as fuck but there is joy. And tears. And laughter. And hurdles. And accomplishment. And challenges. But you find me one mother with a “typically” developing child that has not experienced these same feelings. 

I have read Melanie Dimmits book “Special: Antidotes to the Obsessions That Come With Your Child’s Disability” three times and each occasion it speaks directly to my soul. A statement she makes in the book wrote stopped me in my tracks, “success is contentment.” Not how much money we earn, how big our house is or our IQ level. I don’t know why but this has given me what I needed and helped to pivot not only how I see success for Pippa but with all my children and in my own life.

You see Pippa’s physical obstacles have never caused me huge anxiety. They are tangible, I can see them and we can make a clear plan on how to work through these. We do physio, occupational therapy and hydrotherapy to help with her hypotonia, gross and fine motor skills; we see speech to help with her naso-gastric tube, introduction of oral fluids and communication, she had oxygen for her sleep apnea and we are seeing an ENT, we see respiratory for her chronic wet cough. All of these teams give me a clear plan on how we are moving forward. 

I am ashamed to admit that the very real possibility of her having an intellectual disability, autism, aspergers, low IQ, quite frankly the list is endless that scared me senseless in those early days but hand on heart, it doesn’t anymore. If she doesn’t great, I won’t pretend that I am excited by the idea but I do know that if she does it won’t matter. Because the last 20 months have shown me that we can deal with whatever is thrown at us. I also know from the bottom of my heart that she will be happy. Loved. Content. And in the words of my new favourite author (who has written a blog for Mummy Matcher which you can read HERE) if being content is the new definition of success, my baby is going to be the most successful kid on the fucking planet. 

Connect and Thrive Program - Learn How to Become Your Biggest Cheerleader

Do you feel like your needs are always being moved down your never ending to do list? Do you feel disconnected? Do you feel lonely as a Mum? Do you feel guilty when you take time for yourself? Do you have no idea how to actually start putting your needs first every now and then? Yes? Connect and Thrive is a 3 week program that gives you the tools you need to create space in your life for YOU.

Leave a comment

Send a Comment

Your email address will not be published. Required fields are marked *