I can remember the first 12 weeks of having my son was the mOST perfect time in my life. I could literally say everything was fine and nothing could break this bubble of happiness. Having a baby whether it’s your first, second or tenth can be incredibly hard, it’s an event like no other and no stories are the same. Having my son was just like that, I had a plan but he had other ideas and decided he wanted out another way. It quite quickly dawned on me that even though it was my body, it was his home too. Once we got to 35 weeks, it was his choice when he was ready to join us. I think that word CHOICE it something all parents at some point will debate. ‘Well he’s my son, it’s MY choice, I want what’s best for him’ that kind of thing.
When my parents finally told us my Dad had HD, for the first few months all I could think about was my Dad. Then I started thinking about my son. This small baby who relies on me to pretty much live, has to wait until he’s 18 to find out if he has Huntington’s? How can that be fair? Obviously this decision is based on myself testing positive for the disease, something I think I would of thrown myself into if I knew before starting a family. Now that decision is one that comes with so many risks, negative and positive. I already suffered with anxiety and depression during my pregnancy so I was no stranger to these feelings but they had changed. They were filled with more emotion, I never known a feeling so strong as sadness and anger together. I was so frustrated I just wanted out. The frustration just kept growing and growing. I would go to parent groups and we would talk about our situations and babies, wanting to be so open about my problem but then shutting down. I shut down because there was only so many times I could explain what Huntington’s was without being angry that I had to explain it. Why didn’t people know? How did they know about Alzheimer’s, Motor Neurone and Parkinson’s disease but didn’t know Huntington’s existed? The day I spoke to my Health Visitor I thought would be the day that would change, surely they would have experience of rare diseases and know how to help but again the same questions began. I know it’s no ones fault for not knowing a disease that is so rare and I was once that person too, but now I wanted everyone to know. My postnatal depression classes helped me to overcome my anxiety and depression in terms of learning mindfulness and thinking positively but I always left wanting more. I spoken to my mum on many occasions questioning where the support for mums who have already had children and find a rare genetic disease exists is and help to overcome how this could affect their children. Who can these women really talk to when it is so rare? I’m no doctor and I’m certainly no Huntington’s Disease expert but I wanted to create a place where someone like me could go and know they are not alone. I want them to be given the resources and engage with positive people who lives are affected everyday. I wanted them to know the reality of living or caring with someone with Huntington’s Disease and make sure they feel like have options on making their decisions.
Then You, Me and HD was born.
Do I still have those anxious moments. Yes. Do I still have days where getting up feels unbearable. Yes. But do I have meaning. Yes. I’m not just someone who may have Huntington’s or a daughter to a man who has. I’m a mum, a daughter, a sister and friend, more importantly I am now that SOMEONE who can be there for someone else like me.