Today I Cried – 2nd June 2016

Today I cried.

Tiny Miss H took part in her first ever school sports day.

I cried with pride.  But I also cried out of sadness.  I’m naturally positive and see the wonder and majesty in all her achievements but today I felt a sadness.

She brought up the rear with style and panache. She looked like she was enjoying herself until about half way through her race when she looked slightly lost, confused, tired and sore, her left leg dragging, her gait unsteady.  But she did it, she ran the whole way from the start to the finish, straight into my arms.  She gave it her all as she always does.  I couldn’t have been prouder.

I cried with pride, I cried with joy and I cried with sadness.

Whilst she was at nursery her physical challenges were at times more of a hidden disability, at times subtle and partly camouflaged by age and stage differences.  Today they were on public display.  Today they were smack in the face, screamingly obvious.  I’m not sure I liked that.  It made her vulnerable and it made me fiercely protective of her.

Today our world changed.  I was no longer a warrior mum proving to others her challenges are real, advocating for her to protect her and fight for what she needed.  Today I needed to hug her, hold her, protect her and show her she is amazing.  Of course I’ll always be her warrior mum, advocating for her, fighting for her but the battle lines have changed.  Now I don’t need to prove what I am talking about.  Now I’ll be heard.  Now they can see it.  Now it’s real (until now a tiny part of me hoped it wasn’t – that’s denial for you).

Today our world shifted on its axis and today I saw the challenges she will face, the battles she’ll have to fight.  Until now I’ve been able to fight them all for her.  So far I have won.  Together we win.  Now in a small way I have to hand over the reins to her.   I know she can win.  I hope she knows that.  I hope she’s seen in me enough to guide her through the tough times.  It scares me, but I know she is brave and I know she’ll give it her all.

Her starting school marks the start of an independence that is too big for a small person to have to face and for children with differences that’s huge, for them and particularly their parents.

Today my world changed.

Today I cried.

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Author: H2Au: the stuff of our life

H2Au: the stuff of our life. A personal story of our family's life with Autism, a rare chromosome disorder and auto immune disease.

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