So it’s HD Awareness Week/Month and I have been sharing some old posts and claiming I’m too busy to write new ones. That is only partially true. The truth is these are hard to write. The whole thing is hard but for me sharing helps.
My biggest worry at the moment is my kids, Noah and Luc. They are wonderful human beings but they are also teenagers. They grunt, they fight with each other and us, they claim we don’t listen and that no one understands. They are riding the hormone fuelled emotional roller coaster that is puberty. They have the normal teenage pressures but they also have a dad with a degenerative neurological disease and there is a 50/50 chance they could have the same.
We have no point of reference for this. Kev’s mum did not know this was in the family. It only came to light when Kev, the youngest of his siblings, was in his early 20s. He did not have to do his teens with this hanging over his head. He had life experience when faced with the possibility of having inherited this. He was an adult prior to having to watch his mum be symptomatic. My kids are 10 years younger than he was when the spectre of HD raised its ugly head.
As my boys watch their dad deteoriate, will they have the emotional maturity to deal with it? Will they have the life experience to deal will the fear of inheritance? Will they get into a negative head space and become pesimistic about their future or remain positive and optimistic? The teens are fraught enough without adding this.
Kev’s attitude to life definitely helps all of us. He is mostly positive, and rarely dwells on his prognosis. “It is what it is. Shit happens and life goes on,” often escapes his lips.
The future for treatment looks bright and we point out the trials that are running and the advances that are made to the kids all the time. We take them on the hospital visits to speak with doctors, nurses and social workers. Hopefully this helps a little.
For the rest, the gaps, I have to be the emotional compass, be the strength they may not yet have and lend them some emotional maturity so they can make it through theirs teens and live their lives with HOPE.