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If You Ever Wonder What a Parent of a Child With a Disability Does All Day

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“But what do you do all day?” A question people have asked me before.

Let me try to answer:

I went into battle with school. On the front lines. I pushed back into enemy territory. My efforts were resisted but I persevered. I took ground that was being strongly defended. I claimed it for my dyspraxic child who needed a service that was being denied. I was brave, but I was scared.

Today I was a soldier.

I changed a broken feeding tube, in an emergency. I bathed an open wound and I administered yet another new medication. Just like every day, I tube fed my child who cannot yet feed. I was scared, but I was brave.

Today I was a nurse.

I learned all about proprioception and how understanding it could really help my dyspraxic child. But first I need to learn to say it. It was enlightening.

Today I was a student.

I took my child who struggles with reading to Hogwarts. I read two entire chapters at bedtime. We found platform 9 and 3/4, ate chocolate frogs and fought bravely against Lord Voldemort. It was magical.

Today I was a storyteller.

I gave my child a haircut at home. A trip to a hair salon is too distressing for a child with sensory issues. My home became a salon. One with toys and television and iPads. I felt like I achieved the impossible.

Today I was a hairdresser.

I trawled the internet. Endless articles on Down syndrome, dyspraxia and sensory processing. I drank a lot of coffee.

Today I was a researcher.

I made some gadgets and gizmos. Stress balloons filled with cornflour, spinning bottles that rattled with shiny shimmery beads and bells, ribbon twirlers, baskets brimming with tactile treasures. I had fun making toys that would help my children make sense of the world around them.

Today I was an inventor.

I attended another appointment to discuss the needs of my children. The 60 something appointment this year. Yes, honestly. I’ve counted. I even got there early.

Today I was an advocate.

I wrote a blog highlighting the discrimination faced by those with Down syndrome. I challenged the view held by many that my child should not even exist simply because she has an extra chromosome. I tweeted my MP. I got angry.

Today I was a campaigner.

I visited my child at school to watch her assembly. I saw her walk in. Slowly, gripping the hands of her teacher as she stepped tentatively into the hall. Her legs are getting stronger, her world is opening up. She is surrounded by the support, care and expertise of some incredible professionals.

I watched my anxious child find new confidence in an activity she had previously not coped with. She was brilliant.

Today I was a cheerleader.

I lost count of the phone calls I made, the emails I sent. I opened yet more appointment letters on behalf of my children. I cancelled plans, I turned down invitations. I had to let people down. I despaired.

Today I was an administrator.

I met with trainee doctors and told them about life with a child with Down syndrome. I busted some myths.

Today I was a teacher.

I took my child for yet another blood test. I wrapped my whole body around hers as she wriggled, kicked and generally protested about this latest injustice. I tried hard not to cry.

Today I was a wrestler.

I cradled my child as she drifted off to sleep under anesthesia for yet another procedure. Gratefully surrounded by skilled, caring people who only want the best for her.

Today I was a comforter.

I am happy. I am a mother to two amazing children, both of whom have disabilities and additional needs, both of whom make me incredibly proud every single day.

Today, and every day,  I have the best job in the world!

Originally published: May 23, 2019
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