Additional Needs
I don’t want the care. I need it.
by Sharon F
on 29th April, 2024
Grumpy… And Thankful for It!
I drove the 120 odd miles back home marvelling at the beauty of the sunset while feeling a deep sense of just how fragile and fleeting life can be.
As I walked through the door I was greeted with a squeal of excitement from the dog, you’d have thought he hadn’t seen me in months, and a scathing look from my little dude.
When asked if he was happy Mummy was home, I was rewarded with a lovely grin and a little nod of the head...
And I vowed that I wouldn’t waste a single moment with this little chap.
The munchkin, satisfied that Mummy was now indeed home and not going anywhere for the foreseeable future, snuggled down and was asleep only minutes later.
Que 3am and the little tot had managed to pull out the probe from his SATs monitor, which was now screeching like a banshee.
That problem was swiftly sorted to be followed less than an hour later by the tell-tale alarm going on to warn us that his oxygen was too low… he had somehow wiggled his toes to get the actual probe itself off. Daddy dealt with that one.
Then it was back into bed to warm feet up before it was time to bounce out of bed and greet the new day (smallest person now fast asleep of course, and grizzly on being woken for school).
I may come to regret this statement but seizure-wise, the past month has been pretty good.
Since we changed his meds round a bit the seizures seem to be a lot less frequent and a lot less severe, although they ARE still coming multiple times a day.
I don’t wonder what life would be like without them anymore, the reality is they will almost certainly always be a daily event so as long as my boy is happy, so am I.
But oh boy, I hadn’t realised how run down I actually was until yesterday when I noticed a teensy tiny ulcer starting on the left side of my mouth.
I’m prone to them so I stick on the bonjela and forget about it... Usually.
However this morning I have a mouth that feels like I’ve been chewing on a blow torch, swollen glands in my neck and am feeling pretty naff.
The likely reason for this sudden collapse into crapness?
Things are actually on the up for a change.. Honestly, I have no words (and not just because my throat is too sore to actually talk).
