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| Painting class with my sweet friend Jenny Rudd who encourages me to try even with my twitchy crack hands! |
On the way to school the other day, my 11 year old son asked me a question that normally would have torn me apart. "Mama, since what you have is hereditary, does that mean that Bradie and I have it too?" he calmly asked. I learned several years ago that my children were experts on eaves dropping and were determined to hear what the rest of the family was whispering about. My children were often overhearing people ask me how I was feeling and that they were praying for me. Logan has a huge heart and the built-in desire to protect those around him. He would take the pieces of information he heard and project a reality that often was much more grim than the reality. So we talk about my illness openly so that they never feel that we are keeping something from them. My kids know Hashimoto's Encephalopathy (HE) is extremely rare, but because of this blog, I have been able to share with them about other people with this disease. The number of living patients I know about has tripled. I get to celebrate with patients who are taking part in clinical trials and praying for success. We celebrate every time someone is accurately diagnosed with HE, for the mere fact that doctors are becoming more knowledgeable. I have even been asked to include my story in a book with stories of other patients. These people are like teammates to me. No offense, but we call it Team Twitchy at my house.
I explained to Logan that though I have an auto-immune disease, that just means they are more likely to develop an auto-immune disease than other people, but there are no guarantees either way. However, that fact is why I fight as hard as I do as a patient, an advocate, and as a researcher. If the day comes that one of my children is diagnosed with HE, I want them to know as much as they can. I also want to set an example for them on how to live with adversity, and not to let adversity be their life. That is easier said than done, obviously, when I have follow-up appointments with my five specialists and all the lab work required to stay ahead of the game. My purse sounds like a maraca due to the multitude of medications, but at least we are rocking. I have cut my hair again due to the fact that it had gotten so thin from my immune suppressants. I just tell myself that I make bald look good! HE has killed my balance and coordination, so I look like Jack Sparrow when I walk. Conveniently, both of my kids are dressing up as pirates this year for Halloween!
Birthdays are a big deal to me. In the beginning, I praised every holiday and birthday I was part of because we didn't know what the future holds. Now, I rejoice because I know how blessed I am and will continue to be. I celebrate my friend's birthdays because I am blessed that God gave them to me. My friend Raenette says that girls don't just get birthdays, they get a birthday week. I turn 35 in a couple of weeks. Someone will have to break the news to my husband who is two days younger than I am! Maybe we will just party the whole month of November! I hope everyone will join us!
