Brexit seems so long ago. Just a couple of months ago I was wondering whether we would still have access to Ethans life saving drugs that he takes every day. Those worries are still there in a time where we still have no idea once all the Brexit periods have gone through. But now we also have new worries.
Worries that we may not be able to source all of Ethans medicines right now. It's also not just Ethans medicines that could be affected. This also includes all his medical supplies too, syringes, pads, buttons, tubes, tube replacements, gloves etc.
There has been a lot more on our mind than just stocking up the cupboard full of pasta and toilet roll. Ethan also is completely dairy free and also relies on a lot of safe foods that we know he can manage that are soft enough for him to chew orally. So far we've been able to source all he needs from just a few shops. We are now on complete lockdown in our house and have been for almost a week meaning we can't just pop to get him anything. We have been self isolating and social distancing for nearly 3 weeks now.
We can no longer go for a walk outside our house and garden. We can't pop to the shop for essentials. We are purely relying on our weekly food shop and Ethans dad to keep us going (he's doing a great job keeping us stocked up and even bought us treats!).
Whilst we are used to being at home and keeping Ethan away from bugs or resting him at home after rough patches, this doesn't mean we are always OK. Things get very tough for us having a child with complex medical needs. There have been an awful lot of extra tough decisions we have had to make to keep Ethan alive.
When I say alive, I mean it's life or death for him. You might think that we handle everything thrown at us, you'd be right, but it doesn't make any of this any easier on any of us. In fact things can get very tough for us and very quickly. Day to day is hard work for us and even though we paint a smile, there are also a lot of days where we cry into each others shoulders (I mean mostly me when I say that).
We are on bare respite at the moment and whilst Steve is home, he is also working from home. We are a great team but we're also just parents trying to do our best for everyone. Loosing care impacts majorly on us as a family so please if we're extra quiet you know where we are and we're probably just over run!
This period our care for Ethan is almost like the summer holidays except we mostly only get one waking night a week care unlike the summer holidays where we get 2 nights week. This will happen for the 2 weeks of Easter holiday but not for the rest of the 12 weeks we need to keep Ethan isolated.
Ethans not going to his dad's at weekends either at the moment which is also taken into our care allowance too as its respite for us. We also don't have a direct payments carer either which of course doubles usually in the holidays.
With all of this we made the hardest decision to continue our one waking night care a week. One night where we get to switch off completely (by this I again mean me 🤣). Our carers have been so understanding and are suiting up once they get to us. Changing their clothes when they get in and wearing gloves, masks and aprons whilst with Ethan. Neither of us want to loose this package as we have amazing carers.
For now this is working for us and we hope we are making all the right decisions to keep Ethan out of harms way.