Acceptance…
Our first visit to Keech Hospice was scary, I remember thinking how is this happening?
How am I going to get through this? I was scared, so many feelings were going through my mind and body. The reality of a hospice made it all more real. Being part of it is fine but I was scared of going there. I remember thinking ‘how on earth have we got here?’ how were we driving to a hospice for our 3 month old daughter?
Once we were there, I felt this rush of acceptance as all these other mums and dads were the same as us. They had other children just like Penelope who were running round and playing and enjoying themselves. Amazing volunteers, who immediately wanted cuddles with Amelia and Penelope, were there with the hot tea for Paul and I. I felt like I fitted in, no one was looking at me in a negative or sympathetic way. No one was avoiding me. I wasn’t the mum with the disabled baby. I was just a mum with two children. For the first time in months I felt normal.
We had a tour, which was tough, but it just showed us how incredible the hospice is and what they can offer families like ours. Penelope loved every minute and couldn’t believe how many toys were there. She would just follow the other siblings around and it was so lovely to watch. Seeing the other siblings and how caring they were to their special brother or sister was heart wrenching. It was just beautiful watching the love and empathy they have for them. Something I have now seen in Penelope.
Going to Keech that day was a big turning point for me, it was from then that I got even more strength to cope and just be with my family. When your child has a life limiting illness everyday is a struggle. You are met with sheer joy that can suddenly be turned into pain and hurt in a second. Anything that Amelia does, a smile, a noise, finishing a full feed, all of this is met with joy but then the reality hits and your back down again. It really is like ‘a shadow of death’ no matter how much you do to be in the present and enjoy life you turn around and there it is.
It’s always with you, this impending sense of loss. What I have learnt is we are grieving already, we are grieving the life we thought we were going to have, the life we wanted. It’s all changed but it’s surprising how quickly it becomes your normal. I’m sure some people wonder how I get out of bed every morning, but I do. I’m still a mum with 2 under 2, one of which needs loads of attention, and the other needs a lot of help. It’s our life now, hospitals, tube feeds, meds, soft play and endless cartoons. It’s not a normal set up for most but it is for us.
Disabilities are scary, but it brings out a strength in you that you never thought was there, a part of you that doesn’t really exist until someone comes along who needs it. It takes time to find it but once it’s there it never goes.
We have found, as parents to our girls, that we could let the sadness consume us or we could live every day with a positive outlook and see it as another day to be happy. I am not saying that everyday is amazing and full of fairy dust, as that’s bullshit. It’s hard, to cover up your crying whilst making tea and pretend that everything is ok whilst you are having your 3rd cry of the day. These are all completely normal emotions to have. What we decided is to not let them take over, to accept the sadness and move on to enjoy the rest of the day we had.
Paul said something to me last week that I will always remember, he said ‘We have the rest of our lives to grieve for Amelia, but she doesn’t, she is here now and she needs the best of us. So that’s what we can give her.’
I think about him saying that most days and it really does help. It’s completely helped us move forward as a family.
Now it feels like we live this strange life that has somehow become our normal. I remember taking the girls out for the first time as a family of four. Finally it wasn’t a hospital trip but an indoor shopping trip. We have to be so careful with Amelia as we can’t have her catching any kind of cold or sickness as she will end up in hospital. We can’t eliminate the risks completely but we try to reduce them where we can. I will never forget that first day out, I remember feeling proud, proud of our girls and of us. I wasn’t embarrassed if people stopped or stared as they could see the tube and how Amelia was fed. If anything, I wanted to tell everyone why she had this.
That was a really good day it felt like we were a normal family with a toddler and a new born.