Hillary is the boss and the queen of our house

May 30, 2018
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Hillary is the boss and the queen of our house

Hillary is the boss and the queen of our house

“We are having a field trip because the weather is nice. Hillary can’t handle the heat well. We took the BRATS bus and strolled around and looked at pelicans and ate ice cream and fries. Hillary has Rett syndrome and will be 21 in June. It is a rare neurological disorder found mostly in girls. It is a sporadic mutation of a gene on the x chromosome. Anywhere from six months of age to two years of age, they start to regress. Hillary could walk and say a few words at 18 months, then she started going back. She understands everything. We grew up in a bilingual household so she understands what I say in Spanish. She finds ways to get her point across. She has little fits if she gets frustrated or angry. She closes her eyes to say yes. She has an eye gauge on her computer that is like a mouse that will sync up to wherever she is looking at on the screen. It will zoom in and say what is in that picture. It also has words and she uses it to communicate. Sometimes she uses it to say ‘Leave me alone’.”

“She is the boss and queen of the house and we do everything on her schedule.”

“She has a friend named Kaitlyn who also has Rett syndrome and sometimes she comes over to the house to watch movies. All of the Rett girls have hand movements. Hillary puts hers in her mouth and usually does that when she is happy. There is a government program that help pays for help. Our biggest problem is to find home health care for her personal care and respite care. It is hard work and you have to care about the person. Transportation is also difficult. Today is the first time we used the BRAT to take her out and it worked well.”

“We moved to Fairhope for the school. They didn’t have air-conditioned buses and it is tough for kids like Hilary so we fought for air conditioning on the buses. She can’t sweat because her body can’t heat itself.”

“We are happy to talk and tell Hillary’s story. The best question to ask about a condition is what is their diagnosis? Hillary has made our family unit very strong. She has taught us the importance of self-sacrifice and putting others ahead of yourself. Even in her situation, she finds happiness in the small things. She makes us more empathetic. It is not about us, it is about others.”

2 comments on “Hillary is the boss and the queen of our house”

  1. Ruben Dario Fuenmayor says:

    We love you Hillary

  2. Merriann (Maemae) Duaz says:

    Hi Hillary. It’s Maemae. So glad you have a blog. I love blogs. They did one for our convention in Estonia. A great way to get to see and know people. We will be looking for more pictures and stories!! I loved your story in the Oct 8 2008 Awake magazine. I have told so many people about it. I am looking forward to your next post. Love you, Hillary.

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