When I decided to set this page and website up I wanted honesty, honesty of the situation and honesty to the person I am and if people liked it great, if it’s helps them even better and if it educates people on HD then that’s my job done. But one thing I won’t promise is that this whole thing is sunshine and occasional rainbows because right now all I feel is a massive cloud above my head of unknown weather. I look back at the year I’ve just had and the only positive has been the birth of my son. In that time I found out my Dad was HD positive, came to terms with motherhood and all it’s faces and I lost my bestest friend in the world. I had my heartbroken, mended and then made incomplete all at once. I find it hard now to feel the way I felt before, my security blanket is well and truly torn and risks just breaking altogether. I’m just breathing each minute but not living because if I’m being honest I’m petrified of breaking the last pieces of my heart I have left. I’m scared of feeling anything in case I have to say goodbye. I’m terrified because I’m finally realising I have no control of what happens next for my family, my son and myself. When you become a mum you experience this feeling of gathering everything you can and finding out all you could know to protect your baby but the harsh reality is you can only do so much, else they are only breathing not living too. Mix in HD into those feelings and boom, “all you can do is be the best you can with the knowledge you had at the time.” This advice was from one of the first people I spoken to about my situation @erinpaterson_allgoodthings and it’s one of the reason that’s led me to what I’m about to do. I can worry everyday of my life that HD will take everything I love away but if it wasn’t HD then it would be something else I would be trying to stop to protect what’s mine. However the crazy thing is I might be losing my mind over nothing this might all result in a negative for me. And in that split second I will feel relief, happiness and luck but for only a second. The battle will not be over I still won’t know the fate of my brothers and ultimately will watch my Dad become symptomatic. Accepting HD will always play apart in your lives in a tough pill to swallow but a fight worth putting up with to hopefully one day find a cure to stop this mind f***ery and end suffering. Right now I have the control to find out my fate and that’s something HD can’t take from me. This is the beginning of my HD story but will never be the end.
- youmeandhd