Ethan has complex health needs which take up a lot of time and need a lot of attention.
There are so many reasons why I don't work here are just some of them.
1. Being up all night
Ethans sleep patterns are all over the place. Every night is completely different. He either takes ages to settle or he gets up super early. Or just to trick me he sleeps through all night!! We never know what night were going to get! You can't predict these sleep patterns either. When I was working I used to go in like a walking zombie. I am still like a walking zombie most days now even though I get to catch up during the day on sleep most days. It was hard work going to work on just a few hours sleep and not being aware or as alert as I should be.
2. Getting sick
I catch everything because my body is so worn out all the time. This would lead to me taking time off to recover. I take longer to recover when I can't get rest. I constantly feel run down and this is so hard to deal with. I get a lot of migraines due to stress and lack of sleep.
3. Letting people down
When I was working I had to call in sick all the time. The main issue would be me having been up all night and feeling so hanging the next day it wasn't possible for me to function at work. The second being that I'm always ill and run down.
It was hard to let people down all the time and feeling useless about doing it. People are always understanding but there becomes a time where you aren't going to accept a person who is in less than they aren't in.
I'm a hard worker and I love working. I worked hard for my degree and making a decision to not work was always hard but one we needed me to make for our family.
I suffer from exhaustion which pops up every now and then when I'm run down. I get extra tired, my muscles ache and I feel so weak. I know when these episodes are coming and so try to make myself slow down more and get rest when I can. I also suffer from IBS which is bought on my tiredness and stress. My back takes a battering everyday with lots of twisting and bending and rolling and moving Ethan lots.
Ethan has appointments all the time to see different health professionals. We spent a lot of time travelling to Bristol children's hospital. This usually takes up a whole day forgone appointment.
We are under at least 15 different teams which means appointments pop up all over the place.
I need to attend these with Ethan as I am in control of his care passing these appointments on to someone else just wouldn't work.
Some appointments are quick and easy but some are more challenging. Those that pop up around lunch time are hard keeping Ethan fed whilst getting to appointments or dealing with a hungry child at the end of the day. Ethan doesn't get to stretch a lot as he's either in the car or in his chair so he gets grumpy and uncomfortable.
Appointments are full on and require concentration to take in lots of information and remembering to ask the right questions.
6. Seizure days
Seizures pop up everywhere and anywhere!! Whilst a lot are in the night they pop up in the day too. If Ethan needs rescue medication he will most likely need more time to recover the next day needing time off school.
Seizures can happen during the day meaning he needs to come home to recover.
I also need time to recover after seizures too. It's hard seeing your baby go through all that pain and not being able to do anything but watch and hold them close.
7. Emergency trips
Ethan can go downhill quickly and need emergency treatment. We visit the hospital a lot in out of hours through the night to check him out. This leads to hospital admissions and stays. Ethan often needs picking up quickly from school so being available is key to getting him.
8. Personal assistant
I am Ethans PA!! I chase appointments, book appointments, spend hours picking up meds, ordering meds, chasing meds when they mess them up, file paper work, order pads and equipment, deal with all Ethans personal care and fight his battles 24 hours a day.
I know many parents with children the same as Ethan who do work and to them I salute them. Being constantly exhausted is hard so working on top of all we deal with causes. We are lucky to be in a position that I can be at home and available for Ethan. I wouldn't be half the mum I am of it wasn't for the time during the day to recover and complete everything I need to complete daily. My husband definitely appreciates the more chilled out version for me so this is the best situation for all of my family.