Additional Needs
Age Appropriate
by Jodi Shenal
on 26th April, 2024
Another trip round the sun
January. Damp, grey, about 9547 days long… and my birthday month. After the excitement of Christmas, I actually don’t mind the slow pace of the first month of the year plus I’m more than a little thankful to have reached the grand age of 45 more or less in one piece! 2023 was one of our most difficult years to date – our amazing boy had to deal with significant worsening in his health, and the majority of the year was then a battle to keep him well enough for the spinal surgery he so urgently needed.
The last three months of the year flew by once he was safely through that, so to be able to celebrate another complete circuit around the sun with the men in my life meant a whole lot. The New Year always brings mixed emotions; hope for the coming year, sadness for the friends who we lost in 2023, and a potent mix of joy and fear that only families of medical fragile children can understand.
While we are overjoyed that our children are still here and fighting, there is a terrible fear that comes from knowing Winter is still not over and that it could be any one of us grieving.
For us, 2024 is the first year in a decade where we don’t have the spectre of major surgery hanging over our boy. It’s the year the Dude becomes a teenager – may God have mercy on us all – and the year when, with a bit of luck, things will be a lot more stable for him health-wise. The irony that this is just in time for puberty to hit and throw everything into chaos is not lost on me. Last week we had a neurology review with him and realised that with how unwell he’s been he hasn’t actually had his anti-convulsant medications reviewed since 2020!
Unsurprisingly, the dose he is currently taking is woefully inadequate; and thus the boy is beginning his year with a series of dose adjustments to bring his medications up to where they should be. He is less that pleased about this, however the hope is that this will give him much better seizure control again.
From my family to yours, happy new year – here’s hoping 2024 is a kind one, for all of us.
