Guest post from Emma who has been inspired by her one-year-old twins Ava and Louie, who both have cerebral palsy, to run the Virgin London Marathon in April and raise funds for Scope.
My beautiful twins Ava and Louie were born nine weeks prematurely. At birth they weighed just 4lb 1oz and 4lbs and spent 29 days in the neonatal unit at Hull Royal Infirmary receiving specialist care.
Louie, the smaller of the two spent more time in Intensive Care and the High Dependency Unit. He had to be put on a machine to assist him with his breathing, but after two weeks he joined his sister in the Special Care Room.
It was the most traumatic time I have ever experienced. Going into labour so early, then not been able to hold your babies and seeing them all wired up in incubators. It was horrific.
I couldn’t go into Louie’s Room when he spent time in the High Dependency Unit without my husband going in first, I was so frightened and it was really hard because we didn’t get to see Louie’s face for a week as he had to wear a mask to help him breathe.
I cried all night
When my husband left the hospital on the nights I was still on the maternity ward I would just cry all night because I didn’t have my babies in my arms. I still get flashbacks now.
Nine days before the twins were discharged from hospital we received the news from the neo-natal paediatrician that routine ultrasound scans had revealed that both Ava and Louie had developed cysts in their brains, which were likely to have been caused by being premature.
The doctor told us that this would most likely lead to cerebral palsy, which the twins were later diagnosed with. They said that the severity of the condition would not be known until later on, but they told us that Louie’s injury was more extensive than Ava’s.
The doctor broke the news to us that the ‘worst case scenario’ could be that the twins would be wheelchair users and have very complex needs.
The shock of the diagnosis was difficult to accept, our babies seemed to be doing really well in hospital and the news felt like being hit by a bus.
I can’t remember getting home that night and my husband had to call for an emergency doctor as I had a anxiety attack. What made things so difficult was the fact that Ava and Louie were still in hospital, so we didn’t have them for comfort.
It sounds terrible, but there was a period of grieving for the life that we were expecting with our first children. Without the support of our amazing family and friends I really don’t think we would have got through it. We would wake up in the morning praying that we had just experienced the most horrific nightmare, but it was real.
We got some information about how the disability may affect the twins, and I’ve found chatting with other parents on Scope’s online parents’ forum to be really helpful, it’s so much harder to talk to people who haven’t been through something like this themselves.
A brighter future
The good news is that Ava and Louie are now doing well and we have all settled into family life.
Louie’s condition affects all four limbs and only Ava’s lower limbs. These are improving with the help of regular physiotherapy sessions, and they also have on-going support from occupational therapy and the community paediatrician.
Our consultant at the hospital is pleased with how they are both progressing and Ava and Louie are giving us the answers, positive ones, on what the future holds. We have never experienced happiness like it, they are wonderful and although they have obstacles in their paths they are two determined little people.
We still struggle and there are times we really have to fight with the black cloud that’s overshadowing all our lives, the uncertainty is hard to manage at times.
Louie had an epileptic fit just before Christmas, at the time we weren’t sure what it was and it was so frightening seeing our child in this way. We had been told due to their diagnosis they could develop epilepsy and now he has. Ava has been fitted with splints to wear on her lower legs to help her movement in her lower limbs.
We are more positive now, and milestones in their development mean so much to us. Ava is now sitting up and rolling over, and Louie has just started to roll and his sitting is improving. We celebrate all their achievements, even if they might seem small to others, they are unbelievable and we are so very proud of them!
People think I’m mad for doing the marathon
I work part-time at the council and of my friends and family think that I’m ‘mad’ to start training for a marathon when I already have so much on her plate. But I’m finding the training therapeutic.
Although we still have to an uncertain future to some extent, we are blessed each and every day with Ava and Louie, they are our beautiful children and each and every day they make us so happy, they truly rock our worlds and the love we have for them is just indescribable.
I am running my first marathon for my two beautiful children Ava and Louie and this fantastic charity Scope, which together with our fantastic support from our family and friends, has made Phil and I not dread the future, nor the words cerebral palsy.
You can sponsor Emma for her fundraising efforts.
Have you got your own place in the London Marathon? Join Emma and be a part of Team Scope and have the amazing feeling of making a real contribution to Scope’s work with disabled people and their families.