Life can become overwhelming ever so quickly having a child with complex health needs. Things can change in a blink of an eye which need your full attention. There's no time for relaxing or switching off, because if you do things then build up again so quickly.
You have to plan your time wisely...
Last week we had a last minute appointment which threw my whole week! When you have to plan your time wisely it's hard to be easily adaptable, but that's the way it is with a child who sees many different medical teams. It was an appointment we just couldn't miss. We had been waiting over a year for the appointment due to Covid.
At the moment the rules in place to keep everyone safe state that, it is only one person to attend with the child going to the appointment. This meant that I couldn't take my youngest who comes everywhere with us! I had to find help at the last minute and I am forever grateful for my family's help in times like this. My family live 40 minutes in the opposite direction so it meant heading there and then rushing back to pick Ethan up and then head an hour in the opposite direction! It makes for a very long day.
It scared us non the less.
A day missed at home due to an appointment means housework gets missed and the washing pile mounts up! With no time to catch up in the evening due to not being able to make noise as we live in a bungalow. Last week Ethan also had a day off due to a Covid scare at the school. Luckily all OK but it scared us non the less.
When Ethan's home he needs my full attention. I can get little bits done, but between his and his sisters toddler demands it isn't easy to keep on top of my jobs.
Then I feel like I haven't actually spent any proper time with them, just fulfilling their daily needs with food and water! It's a big old spiral and this week I'm now trying to catch up massively.
I hit a brick wall
It's hard to keep having the get up and go when your so exhausted, mentally and physically. This slows the process down massively! Yesterday I hit a brick wall. Today I need to climb that wall to get back on the organised path!
Every day brings its new challenges and some I'm prepared for and some really knock me for six!