Updated: Oct 16, 2018
9 months ago, on January 23rd, Rosalie was diagnosed with a condition we'd never heard of. It was a Tuesday. We came home, put Rosalie to bed, left her with Tina's mum, grabbed a McDonalds and went to a social event with friends from church. I remember laughing with friends as if everything was fine. We knew we'd received major news and it meant our lives as parents would not be 'normal'. Having never heard of Rett Syndrome, we didn't quite know how to feel. The pain and grief started over the next couple of days as we began to understand what it meant for Rosalie.
Two weeks later, probably because I felt I needed to do something, we decided to fund-raise for the two charities Reverse Rett and Rett UK. We were already booked in for a Tough Mudder having started a bit of an annual tradition with some friends. Over the last 9 months, we have raised over £5,000 once Gift Aid is added in. We have been overwhelmed by the support and generosity shown by friends, family, acquaintances and complete strangers.
It is now October and it is Rett Awareness month. It seems like a good time to reflect on the last 9 months so here are a few thoughts in no particular order.
I have a love/hate relationship with social media. It has opened up connections with parents of disabled children, especially those who are facing incredibly rare diseases/syndromes, in a way that just was not possible even 10 years ago. Not only that, it has allowed us to raise awareness and money with minimal effort but with a potentially massive impact.
There is a continual fight to get the balance between over sharing and raising awareness right. We don't want to be identified as the Rett Syndrome parents, nor do we want to define Rosalie by the syndrome. In the same breath, we want to raise awareness so Rosalie, and other children with Rett Syndrome, gain access to technology to communicate, therapy to ease the symptoms and in the near future, a cure.
I am generally good at keeping emotions contained within boxes in my head. Considering it was mental health day on Wednesday, it is clear that I'm not the only one and this isn't a healthy way to deal with it. A blog seems to help. As does getting out of teaching.
Meeting new people over a couple of days can get very intense very quickly when a simple conversation about family turns into the ins and outs of Rett Syndrome and life with a child who can't talk or walk.
In these conversations with new people I am worried that I paint a picture of just pain and struggle when actually there is a lot of joy. I am also worried that I don't show enough emotion and sound stoic when actually I just don't want to cry like a baby in front of a stranger. I am also aware that I have a time limit before my voice starts cracking and I need to change the subject. Generally that time limit is lower the more I need to face the box of emotion that has been filled up over the course of the previous weeks.
Finding out your child has a disability is life changing and heart breaking but not something to fear. Through Rosalie's laugh, her interaction with other children and their interaction with her, her personality (and love of food) and her general cuteness, we know we are very lucky parents. There is a common misconception that parents should seek an abortion if a disability is found in the womb, especially with potential Downs Syndrome and other life changing conditions. I just want medical sciences to focus on making life better for children like Rosalie, not on how to end their life before it begins.
Though Rosalie's life is tough, I would never doubt her value. I cannot understand the idea that Rosalie could be an unwanted lump of cells simply because life might be less comfortable, for us and her. Life is so much richer and beautiful even within the pain and heartache.
I am very grateful for family and friends who have provided emotional and practical support throughout the last 9 months. I am also very grateful for the patience of those who may have got more than they bargained for when they asked how I was or how my daughter was doing.