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Confessions of a Special Needs Mum

May 29, 2016

 

Being a parent is a tough job and although there have been many books written on how to wrangle and discipline children, there is no one handbook that shows us exactly how to parent. Mostly parenting is a journey that evolves and grows with our children. When I discovered I was pregnant with my fourth child, I wasn’t overly concerned. After all, I had three gorgeous kids already.

Then I got the diagnosis that no parent ever wants to hear, “There’s a problem. I think your baby has Trisomy 18 (Edwards Syndrome). I’m afraid it’s incompatible with life and I recommend you have an amniocentesis.”

That was on Friday morning and normally results would be back the following day, but being a Friday we had to wait until Monday.  As a newly minted Christian I was petrified and I reached out to our amazing church family and prayers started flowing. I was so grateful to know that we were not alone - that others were helping us stand tall.

 

The phone call

At 5.30pm on the Monday afternoon, I got the phone call. He had got it wrong, it was only Down Syndrome! God was so faithful and I was so very thankful. The joy of prayers being answered - that weekend I prayed harder than I had ever thought possible. That was 10½ years ago and every day I am reminded about how lucky I am that he is here.

 

 
There were many things that happened in his first few years that astounded me. A heart condition misdiagnosed, pneumonia that caused both of his lungs to collapse, surgeries to correct all sorts of things – but this little soul is the brightest light that shines in my world.

But, my confession is this: There are times when I don’t want to do this anymore. I am raising him on my own as my ex-husband lives half a world away. There are times when I am so angry with God for putting me through this, that I am not the right person and that someone else would be much better suited to this than me. What did I do to deserve this? I want to give up.

And then my little boys face looks at me with joy and love. His beautiful eyes twinkle... and I am lost in pure love.

I wonder - is this how it is meant to be? Shouldn’t we ALL be joyous and full of love?


And now we have these three: faith, hope and love, but the greatest of these is love. 1 Corinthians 13:13

I remember that although I may struggle with the feelings that I am not doing a good enough job or that God has turned away from me and that I am on my own, ultimately none of that matters.

What matters is that in his innocence this little person emanates pure love and brings joy to all who meet him. That is when I stop and think about faith, hope and love. It was FAITH that brought me through the dark days and it still does. Even when I struggle with God and the man made institution of church, I know I am not alone and never will be. It is HOPE that reminds me that the hard days are just moments, bumps in the road, and it is LOVE that looks at me every day and reminds me that I am blessed.

 

Remembering I am loved

This is my confession. A confession of a fallible human being who doubts in her own abilities and of anyone’s ability to even contemplate loving her. Yet every day I am reminded that God loves me.

I think there are times when we all find things tough or unfair and want to stamp our feet or throw the toys out of the pram. In these moments perhaps we can take a deep breath and look into the eyes of someone you love and who loves you. Take a good look at the world around you, listen to music or read a book and do whatever it is that makes your heart sing.

Because that is where you will find God, looking right back at you saying, “You’ve got this because I’ve got your back. Have faith, take hope and remember I love you, always.”

 

 

Aby is a nutty, outgoing, single mum of 4. The eldest child is married and the youngest is 10 and has Down Syndrome. Aby is his full time carer. She is also studying a Degree in Primary Teaching at the University of the Sunshine Coast, Queensland, Australia. Aby loves to work away the days' stress with a quick boxing session.


See all previous articles by Aby Wright
 

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