Thursday, February 16, 2017

Dear Emma. It's not you. It's me.

This is a significant post for me.

Emma is 5 years old today and this is the first year we have actually celebrated her birthday.

Birthdays have always triggered intense grief for me. What is there to celebrate when faced with the harsh reality that it's been another year of missed milestones, another year watching your child struggle through life and another year missing out on all the experiences that 'normal mums' with 'normal daughters' get to enjoy. 

Once a year at birthday time I allowed those waves of grief to all but crush me. If I briefly allowed a memory of her birth to flood back it was quickly dismissed as too painful to consider.  If only I had known as I held that precious newborn in my arms that all the hopes and dreams I had would be destroyed a few months later.  If only I'd known the happiness and joy I anticipated her life would bring to the world would be replaced with worry, fear and the feeling of carrying a burden far too heavy. 

Those feelings started late last year as I began to dread this upcoming birthday because we had always hoped and prayed she would be 'normal' by 5.  I survived those first few months following diagnosis by telling myself that all I had to do was get to age 5 and then everything would be okay. 

And then just like that - she turns 5. 

But.... then something happened. Something significant.

As I wallowed in self-pity allowing my thoughts to descend to dark places, I had the sudden realisation that this was not about Emma. 

This was about me. 

I didn't need to grieve for what was LOST because I could instead choose to celebrate what we had FOUND in Emma.

I needed to take the focus off her and place it on my attitude. Emma didn't choose to be disabled to make my life difficult. She can't control this anymore than I can. The only thing I can control right now is my response. 

This bible verse sprung to mind.

"Shout for joy, o barren woman, she who has not given birth; Break forth into song and rejoice she who has not gone into labor..." Isaiah 54:1 

What on earth does that even mean? 

It means that joy should not be limited to our circumstances. It also means that we can choose thankfulness and joy even when we 'can't see' what it to come. The barren woman in this scripture chose to praise and thank God even though she was 'barren' and as she lifted her heartfelt praise to her creator - something shifted within her and it released God's promise and she was blessed with more children than she could have imagined. 

I began to thank God for Emma. I thank you that she is beautiful. I thank you that you have entrusted her to me. I thank you for her smile. I thank you that she loves to sing. I thank you that she laughs at her own jokes (like me). I thank you that are bringing healing to her each and everyday. 

And I thank you that you carry the burden so I don't have to. 

As I did this - something shifted within me.

Suddenly the lense through which I saw her changed colour and I saw JOY.  

So this year, instead of grieving for what ISN'T  I'm choosing to celebrate what IS.

Emma is a life worth celebrating. A gift - to me.

Let's sing for joy! 


  1. Beautiful. So glad you shared. What a 5 years. Thank God for Emma. Thank God for you & your love & courage.