World Prematurity Day

I never thought I would have extreme premature twins. I never went to any classes or walked round the NeoNatal baby unit when I was pregnant. That was a world I never gave a thought to, that was until Harry (who was dying anyhow) decided to make an appearance at exactly 25 weeks. The week before we were sunning ourselves in Spain, getting an Easter break in before the boys were to come along in August. Harry weighed 1lb 1oz and Tom came along at a whopping 1lb 7oz. When they were born, that was when I was introduced to the world of Neonatal. They came rushing into the room and worked wonders on Harry and Tom, keeping them alive. Harry spent six and a half months on Neonatal and Tom spent five and a half months. In that time, we got to see the dedication of the nurses on the unit. They counselled us as parents, laughed with us, gave us a hug when we were upset, and sat with our boys during the night when we weren't able to, making sure they felt loved and gave plenty of cuddles when they were upset. The nurses worked bloody hard on our boys numerous times keeping them alive, and the emotional impact on them is huge too. People tend to forget that they are humans and have feelings. I won't name names, but there was a nurse who came in on her day off to take Tom for an operation at another hospital. I will always be in her debt and words cannot describe what I think of that fantastic lady. They became nurses to make a difference to families and sometimes have to put up with a lot from us parents, including emotional tirades when we don't understand what is happening, or unfortunately sometimes when a child is lost. They welcomed us into an unsure world with open arms and became part of the family. Being a mum to twin premature babies has opened my eyes to a fantastic world. Would I prefer to have two normal boys? Yes, I would; I would be lying or stupid to say otherwise. Am I disappointed to be in this world and be a member of the Premature world? No, I'm not. The boys and other children like them have shown me how life should be. It's full of innocence and laughter. It's shown me humility and compassion beyond belief.

Siblings

I read a very good blog today by someone regarding siblings. It got me thinking how hard it is for the brothers and sisters of kids with disabilities. It's not just about the time they miss out on due to the amount of time parents spend looking after the other kids, its the grieving process they have to go through, even if their brothers and sisters are still alive. My daughter once said, I'm never going to be an auntie, they're not going to get married and have normal lives. You often forget how much these kids actually go through. She's spent a year struggling with her feelings over her brothers and what their future is going to hold for them and for her as most siblings feel they have to be the ones to carry on looking after them after our lives have ended. This has impacted on her job choice, where she will be working etc. This in turn has had a huge impact on her life, where she has missed a whole year of education because she hasn't been able to cope. Luckily, she has had a supportive college and been able to access a fantastic counselling service which is funded by charity and counsellors giving up their free time to help children and young adults and there is light at the end of the tunnel. Looking into it, there really isn't any support for them, especially young adults who themselves are going through enough changes in their own lives without having to cope with everything else that is impacting on their lives. I personally have tried to limit the impact the boys have on her own life. I've alway made sure she's had her own time, encouraged her to go out with friends, join groups and been open and frank about the changes in our lives the boys have bought but that still hasn't stopped the inevitable breakdown she has had as she has come to terms with her life. On the brighter side, she herself has admitted she is a better person for the introduction of her brothers into her life and I have seen her grow into a selfless, beautiful young lady who will make a difference to the world due to her life experiences.

The life of a Carer

Thought I would re start doing a blog. It's been ten years since the boys were born and it's been a roller coaster ride but one I wouldn't change for the world. The reason for this re think about writing is down to the death of a young man who was taken way too soon. His mum was an inspiration to me who when I first met her scared the hell out of me. She was a single parent who had asked me to meet her for a coffee and ask my advice over certain matters. At the time she seemed a hard lady who would take no shit from anyone. The more I got to know her and like an onion peeled back her defences she showed all that hard exterior was protecting a lady who had had a raw deal from life. Not because her son was disabled but because she had to do it all herself. There was no help from the Local Authority, health and had to fight for what was rightfully due to her. It exhausted her like most other carers in her situation. Unfortunately her son passed away a few weeks ago and she was literally left with nothing. After all these years of caring for her boy and saving the Government thousands of pounds, they took everything away from the day he died. Like most of us Carers, there is no back up. The mobility car had to go back, the money that she had to live on was stopped straight away and the house which was adapted for him will be going too. While she was sitting in the hospital waiting for her boy, she was having to think about getting a job and how she was going to pay for things rather than mourning her son. Is that a way to treat someone who through no fault of their own, devotes their lives to caring for their loved ones? It's bad enough that they have lost the person that means the most to them without having their dignity and possessions taken from them leaving them basically destitute. For us Carers, that is always at the back of our minds and brings home how fragile life is and how people are taken for granted by this Country x