Baby Jessie's surgery is fast approaching and it's been a struggle. We have a seizure increase again and Coo's been so very poorly this week. If I'm honest, it's not really surprising, the week before Jessie's last surgery, was just the same.
Stress is a major trigger for Coo and always results in increased seizure activity and a bit of a struggle but the rescue meds (Midazolam) are in place and we're coping.
What to do?
Well, we could stay home and hole up and try to ride things out - we've done that before...often! or we could try to diffuse things a little with a change of scene and hope they will settle a little.
Everything you do, if you have disabilities, needs additional planning, things able bodied people just take for granted need careful planning! You always gotta stay one step ahead and have an answer to all the 'what if's' but one thing I've learned is...if you get bogged down in all the negatives you never manage to soar with the positive things in life anymore!
I guess we all find a way, we have to...there's a big difference between existing and living!
Our SDS (Self Directed Support), has really helped us find the positives again and that's been the most valuable lesson of all!
Why was I so afraid to make the switch and try directing our own support? I guess we all worry about the unknown and don't want to risk what little support we have, incase it all goes wrong!
Looking back, it really was the best decision, scary at the time but so very worth it in the end!
Don't be afraid of SDS if you get the chance to try it, reach out and grab with both hands!
(((hugs)))
Maz x
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