An Open Letter to my Son on his Birthday

To the most incredible person I know, my son.

 

Next week you turn 8. A number at times along the way I didn’t think you would make.

I can’t believe that 8 years ago we were waiting for your arrival and today you have turned into an amazing superstar.

The journey hasn’t been an easy one for any of us, least of all you.

I’ve spent countless nights stroking your head after a seizure, whispering that everything will be ok.

I’ve cried with you when you’ve been sad and exhausted.

I’ve rocked you and calmed you when your body is consumed by pain.

I’ve massaged your legs to reduce the cramps.

I’ve stayed up all night and watched you breathe to make sure the next breath comes.

I’ve spent hundreds of nights lying by you in hospital watching the machines bleep checking you are still alive.

I’ve taken you to many hospital appointments to get you the right treatment.

I’ve fought for you to have what you deserve and to make your life more comfortable.

I’ve administered lifesaving drugs and helped to save your life.

I’ve held my breath when you’ve held yours willing the next one to come.

I’ve celebrated all your milestones from opening your hands to holding up your head. I’ve rejoiced with you every time you get star of the week for being so clever.

I’ve been overwhelmed with pride when you demonstrate new skills like using the eye gaze.

I’ve been flooded with excitement every time you communicate with us using your eyes or any form available to you.

I’ve shared the utter love and warmth that you give from the best cuddles ever.

I’ve been melted inside from the times you look directly into my eyes and babble away telling me all about your day.

I’ve shared your excitement over CBeebies and watched many hours of toy story holding you close.

I’ve made hundreds of memories with you at home and away.

I’ve been splashed by you in the pool when you kick your legs in excitement.

I’ve experienced the pure delight and utter calmness of just being in your company.

I’ve taken on many roles to care for you on our journey so far; nurse, carer, driver, PA, physiotherapist, supporter amongst many others, but by far my greatest role is simply just being your mummy.

You make me the proudest person every day to see your strength and determination but above all that your love of being around all of those who care so deeply about you.

Thank you for the hardest but most rewarding 8 years of my life so far.

Love mummy xx

When Children Say Hurtful Things

If you are a parent to a child with special needs, you’re no stranger to unwanted comments or stares from complete strangers…often little children are the perpetrators.

I know for a fact that each one of you has had your fair share of unexpected, unwanted and insensitive words directed at your uniquely wonderful child. How do I KNOW?

Well because that has been our family’s experience, and the shared experience of many other special needs parents I’ve met.

You know, comments like “What’s wrong with her?”   and “why can’t she walk?”

The other day, I was at our favourite indoor soft play with three of my daughters.

My 11 yr old Annabelle is fantastic with her younger sister Brielle. She holds her firmly by the hand and helps her walk about, climb up the soft frames and go down the slides.

Without her big sister, I wouldn’t have the energy or patience to bring Brielle to the soft play! The lovely thing is, that both enjoy the time together.

It’s not a “chore” to Annabelle- she genuinely loves helping her disabled sis to navigate soft play and have fun!

There were two young sisters who started talking with my girls. I found out later that they were asking all sorts of questions about Brielle.

I think Annabelle tried to be matter of fact and casual in her responses. But when we were leaving, I could tell she was markedly hurt and a bit rattled by what the older sister (maybe 7/8 years old) had said.

She told her “I’m glad my sister is normal. I wouldn’t like to have a sister like that”.

Tell me this, how do you deal with this insensitivity??

 I feel quite emotional now, reflecting on these words. But do you know what I told Annabelle? I reassured her that some people in this world, including children, are just plain ignorant…

That means the don’t know what they are saying. This girl had probably not met many people with disabilities, nor had she been taught to treat people with physical limitations with equally and with respect.

What is “normal” anyways? I’m guessing that this girl had no relations or friends with disabilities either, at least that she spends any amount of time with.

So for children, I think a lot of their responses to kids and those with disabilities depends both on their personal exposure and education around disability and differences.

Comments like this can nonetheless be very hurtful.

I think it helps to keep a positive outlook though and focus on what we have to be thankful for, and not give any place to negativity or words that are hurtful in our lives. Shake them off!!

My precious little girl does have more than her fair share of disabilities, but she is LOVED, she is TREASURED, and she is HAPPY!