Sharing your home sometimes becomes quite overwhelming.
I don't mean sharing it with my husband and children, although that in itself is another matter! I mean opening my home to everyone who needs to come in.
We have carers in every week to help us with the care of Ethan. This is so very needed but it can become overwhelming.
It sometimes feels like your never alone.
Of course, we don't have care every day so we are alone but it feels like our house is always full. This is an odd concept because I love sharing our home with family and friends and I love having our carers.
Evenings are often full of ups and downs to settle Ethan so we often don't get our evenings free.
The nights he settles are when we have care in. The nights we could get to sleep early, but instead we need to wait up to let carers in.
When we first had overnight care it was incredibly weird to let someone into your house and have them stay awake all night whilst you slept. We soon got used to it and it's become normal practice now.
We don't notice the carers when they are here and we manage to get some proper rest.
Also adjusting how you act in your own home when others are in and out all the time is hard.
Having to be fully clothed to go to the toilet in the night, or make the bottles. Ensuring you close the toilet door or have the place tidy, my house is definitely not a show home but I do try to keep it semi tidy, although this isn't often possible and carers and practitioners often see the house in a right mess.
Entrusting your precious son to carers is something I had to get used too.
Allowing them to be in control and take on his care took me a while to adjust too. This was easier to hand over to night carers as I wasn't there to takeover.
The day carer visits were harder to switch off from and it took me a while to be able to relax and not jump in to do things for Ethan.
Accepting help is never easy but I know I cannot do it all alone.
We have been incredibly lucky that all of ours carers past and present have been so lovely and just fit right into our family dynamics.
We see the same carers every week which is the way we need it for consistency.
Our day carers are often around during family times so we feel like they are a bit of extended family for us all. It's always sad when someone moves on because they become part of the family.
We constantly have appointments for Ethan inside our home. People come to see Ethan or to check in with me.
Its hard to know that so many people visit you weekly but they aren't here for a fun play date or a glass of wine.
I often feel overwhelmed by the weekend, as our house has been used by loads of people all week, that when everyone's home I never get it in order.
I am very appreciative of all the help we get. We couldn't do it without the help of all our lovely team.
They really are all lovely and are part of the family.
Just sometimes I wish this could all be different and we could have just the normal traffic of everyday life for fun and enjoyment rather than necessity.