Additional Needs

And here we go again

Posted by Carolyn Voisey on 16th January 2020 Additional Needs, Advice & Support, Disabilities

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Ah, 2020.

Welcome to the party – 2019, you have overstayed your welcome and may now buzz off.

After what has probably been the toughest two years as a family yet, with life-threatening illnesses and full-on carer burnout, the new year didn’t so much explode into being as arrived with a slightly pathetic ‘ftzzz’.

I try to be enthusiastic for the year ahead, I really do. It’s just that after 8 years of living this extraordinary life I’m not exactly expecting anything to change.

My son will still have the same needs, and the battles will continue although they may look a little different to last years.

Sam is growing like a weed (very rude if you ask me), and as he gets taller and heavier the physical demands of caring for him are getting tougher.

My little boy is little no longer, and his father and I continue to grow older.

I’ve long since stopped hoping and praying that he’ll learn to stand or self-transfer. His muscles simply won’t hold him.

Thank the Lord for hoists is all I can say. Once I dreaded those things becoming necessary – yet when last year they were fitted I could’ve skipped for joy. Funny how our perceptions change.

And that isn’t all that’s changing. I’m going to be an Aunty again, for one thing; Sam continues to defy any limitations put on him and is doing things HIS way, as he always has.

After being dangerously ill last year, this child continues to amaze me with his strength and determination.

His ability to communicate continues to improve, his ability to support his body when sitting does too.

After suffering the full effects of my mental health being shattered at the end of 2019 I will be taking rather better care of myself this year, maybe not staying up quite so late filling in forms for a start.

Less social media, more social time with the people who matter.

And absolutely more time spent with my son and husband; when mobile phones and laptops, forms and funding applications are left far behind.

No matter how bleak things seem, or how difficult the year ahead looks its worth remembering how nature deals with the changing seasons; nature dies back in winter, only to spring forth with renewed life in spring.

Like the plants, we also need to take stock and rest.

If we don’t, we won’t have the energy for the important battles, or the insight to know which need to be fought now and which can wait.

My sons needs will evolve, and we have to be ready to evolve with him.

But most importantly, we won’t be ready to grow again when the sun shines and the dark days are behind us.

Here's to 2020, may the year be kind.