Additional Needs
Age Appropriate
by Jodi Shenal
on 26th April, 2024
Thriving while surviving
Today I read a wonderful piece on The Mighty about how parents like us shift into survival mode; just as parents of newborns do, in order to just get through another day.
Sam is now 8, but broken sleep, anxiety/fear, endless nappies and early-years-type learning is still a daily thing. It got me thinking; how is it possible to be happy in this life of chaos, seizures, disability and times of overwhelming grief?
My life is incredibly happy. There is so much love, joy, giggling and fun in our home despite (maybe because of?) Sam’s complex health issues.
Going out for a walk and seeing my son smiling, trying to kick Daddy walking ahead of him (because Sam wants to be in front, obviously) makes my soul sing.
Cuddling at the end of the day reading stories together, something so ordinary for many as sacred Mummy/Sam time, even when the seizures shove their way (rudely) into the mix.
Our home looks like we’ve been burgled. Permanently. Laundry sits in a heap, the dishwasher sits unemptied.
I confess; I frequently just grab a mug from the dishwasher and close it again without emptying the lot.
Going to the gym is a thing of the past, the closest we now get is swimming and laughing with Sam as we move him through the water, encouraging him to use his arms and legs, while we scoot along the bottom of the pool on our knees!
I was never overly house-proud but I genuinely cringe when we have visitors over and it’s a struggle to find somewhere to sit. Almost 12 months of major building work has only added to the madness.
There are days when I feel that acceptance is the key; and days when acceptance goes AWOL and I want to scream at how unfair it is that a little boy should have to suffer so much.
Acceptance has helped but isn’t the key to our families happiness. Every day we wake up and quietly thank God our son is still with us.
And every day I choose to live happy and to hope. I choose to see the sun and to revel in the beauty of our world disabilities and all.
I hold the key to my own happiness and ability to thrive; and who wouldn’t want to choose that?
