Miranda has always been beautiful, sweet and full of life. She was a select soccer player for several years and a demon on the field. She also played volleyball. She was born on June 18, 1994.
She has a beautiful 6 year old daughter. She was diagnosed at 19 while pregnant. Shortly after her father passed away from HD. Miranda is a fighter. Her motto is “if you don’t use it you lose it ” we live by that in our home. She works hard to maintain her Independence and she does struggle…but she never gives up trying.
Oct 4, 2019 It has been an exceptionally LONG week at our house. Miranda had a swallowing evaluation Wednesday. I have had to do the heimlich 3 times in the last 2 weeks. She has been choking on liquids. So now we are at pureed foods and honey thick liquids. Skyla Rue saw neurology today. She has had an EEG and what we thought were siezures are. She starts Kepra tomorrow. 😭 We also started blending our own formula for her Gtube because she has had so many problems with others. Praying for a much less stressful week next week.. 🙄
August 1, 2019 I NEED TO VENT! yesterday my daughter wanted to go to the grocery store with (25 with JHD). she was having a really good day she didn't want to use her chair or take her walker. Which was fine, when she does this I have her push the shopping cart for support. Well she got about a half of isle ahead of me. I hear this little girl ask her mother, " mommy, what is wrong with that lady,? Why is she shaking so much?" To which the mother replies " she is probably on drugs!" 😠 My daughter also heard the exchange. I cold see my daughter's really good day just crumble. I was immediately angry. I chose not to let my anger get the best of me (it would have upset my daughter even more.) I did decide to use it as a teaching moment. I kneeled down to the 6year old right in front of her mother and told the little girl "no, honey she isn't on drugs, she has a disease in her brain that causes her to shake, she can't help that. It's called Huntingtons Disease, maybe your mom will Google it and tell you all about it. I also told the little girl that my daughter's name is Miranda and she is very sweet. While the girl walked do the isle to say hello to Miranda. I very nicely explained to her mother that making judgements about people who you know nothing about is very unkind and kindness is free. That raising a child to be kind is far better than raising them to be judgemental. I also explained to her that Miranda is very self conscious about the shaking and because of her comment it will probably be a month before I can get Miranda to come if of our house. 😠 I'm still mad about it. Ignorance us never an excuse to be hurtful. Sorry it's so long, but I really needed to get it off my chest so I can let it go.