Defined as “a medical condition from which there is no cure that will shorten a person’s life or where a child will not reach adulthood”.
The diagnosis given to your new born baby by paediatric professionals, what does it even mean? What do you do with that information? To then come home with your baby who is “life limited”
This one was pretty big for me, it took a long time for me to actually get my head around it. This term that was used so often to describe Ruby either in medical settings, or the copious forms that needed filling out. I think I used it for a long time as a way to not actually let myself fully realise what it meant for me, and for Ruby. I think it went hand in hand with the denial phase. To think about it meant I was thinking about how many days, months, years that I would actually get with Ruby, and this was a totally impossible thing to know or to even predict, it was an unknown.
Im not sure you ever feel at peace with having a life limited child, but as I thought about it more, and became more confident in myself and in Ruby and what her medical needs and limitations were, it helped in realising what this meant for us. Ruby was extremely medically complex and with every chest infection, seizure, bout of sickness , you always had deep in the back of your mind, would she get through it this time? Did she have enough strength this time? With each hospital admission, would we get her back home with us again? This was an extremely hard thing to live with, but I never let it be at the forefront of my thoughts. I didn’t let it consume me. I had decided that that was of no benefit to me or to Ruby, and wasn’t a healthy way to live our lives. It made more sense to me to know Ruby inside-out, to know her every move, to be strong and confident and to be her advocate, to know the strength that Ruby had within her.
We had made a decision that we would live as “normal” a life as we could, as “normal” as a life with a medically complex life limited child can be. So yes we were always out and about, always in a coffee shop, out for walks, going to the beach, hotel stays, weeks away, we wanted Ruby to experience as much as she could in her life, a lot of which she was unable to comprehend unfortunately, but I truly believe a lot of it she did. The beach was one of her favourite places: the sound of the ocean, the wind in her face, the smell of the ocean, the calmness and joy it brought her will forever live in my heart. There were plenty of events cancelled along the way: trips away, Ezra’s first birthday party, every bank holiday we were sure to be in hospital. We spent three New Years in a row in hospital, but we had to be just like, whatever, there was no way I could let myself get annoyed about those things it was of no benefit to Ruby or us and was a battle that wasn’t worth it, it was what it was and I was ok with that, it was “our normal” and you know what I liked our normal, we knew no different. In order to function within the crazy world of having a complex needs child you had to go with it, learn what was worth fighting for and know what was a waste of energy. Don’t get me wrong there were plenty of times I was like not again, come on like give us a break for a minute. When we were in hospital that much you help yourself to the supplies you needed, make your own tea and toast, pretty much did the ward rounds and had a direct phone line you knew you were there far too much.
Should a parent have to think about what they would want at their child’s funeral? What that would look like? Make sure you would financially be ready for that; how is a human brain, a mother, ever suppose to comprehend that of their little one? To think about what the future would look like without their child in it. There was no way you could let these thoughts and feelings fill your everyday thinking, if I did I would not have been able to function on a basic level for Ruby, these things I tucked away at the back of my mind and only let them come out every now and then, otherwise they would have fully consumed me.
I got five precious years with Ruby, and I will forever be thankful for those five years, but in turn I will forever be pissed that I didn’t get another five years. What I wouldn’t give to have that time all over again.
“Though she be but little she is fierce”
Lisa xx