Additional Needs

Raising Kids With Special Needs: MY Birthday Wish!

Posted by Carolyn Voisey on 3rd February 2016 Additional Needs, Advice & Support, Disabilities

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Our childrens' birthdays can be hard but people tend to forget that OUR birthdays are equally as difficult sometimes.

Tomorrow I step slightly closer to a, ‘Significant Birthday’, (gonna leave you guessing).

And I am not overcome with joy at the prospect.

Ageing doesn’t bother me at all (think hair dye and anti-wrinkle cream).

What upsets me is that while we are all ageing, my precious little boy is almost like Peter Pan.

He has made significant leaps forward in his development in the past 12 months, but his motor skills are still virtually non-existent.

I find myself jealous of those mothers who have to repeatedly wipe their kiddo’s faces clean, and of the mothers shouting at their children to sit down/shut up/be quiet.

Actually, no. I’m not jealous of those parents…I’m heartbroken.

I want to give those parents a shake and tell them to revel in their child’s mischief and willful behaviour!

I want them to understand, deeply, that they are so so lucky that their child CAN run or talk the hind legs off a donkey.

I would give anything for my boy to have those same skills.

Tomorrow makes another year gone in my life and there are so many memories from that year, not all bad either!

But it has thrown into sharp focus how slow Sam’s development really is.

For the past 3 years he's been SO close to crawling, but he hasn’t made any progress in this area at all.

He’s been ALMOST sitting independently, but again not moving forward on this one.

And that makes me ache deeply in my heart and soul.

It isn’t the same heart breaking, stabbing pain the seizures cause, that pain comes from fear and the feelings of being utterly powerless to do anything to help my boy.

It’s the much deeper ache of grief.

And it doesn’t ever go away.

We learn to live with it, like you would learn to go on living without a loved one who’s passed away, but it's always there.

He HAS made leaps forward in his comprehension however…

Only on Friday his teacher was incredibly excited to tell us that Sam had been trying to blow a bubble off her finger in class; and that in the sensory room he had used his eyes brilliantly,

looking around at all the decorations still up in there from their Winter Wonderland theme…!

These are the moments we cherish, because what is only a tiny achievement to most is phenomenal for our little guy.

What I REALLY want for my birthday, you can’t buy in the shops or online.

It isn’t something that you can hold or feel.

All I want is for my little boy to have a happy, healthy life free of the accursed seizures that affect him daily.

If I can’t have that, tomorrow at least, then I’ll happily settle for a birthday cuddle off my favourite little person, and hopefully a chance to play with him after school (assuming he isn’t too tired).

After all, growing old is inevitable… growing up is optional.