Wow! The week is only half way through and yet, I am already so touched by all of the support our family has gotten for National Eosinophil Awareness Week. I have family and friends, old and new, that are participating in the activities that I have listed on this blog and Facebook. My niece went out and bought a pink shirt just so she could write "I am wearing this shirt to raise awareness for eosinophilic esophagitis disease" on the front and then "for my little cousin Andrew" on the back." She, as well as other friends, have passed out dum-dums. Friends and family have posted information on Facebook each day. We even had a former preschool teacher contact us to write an article about Andrew to help spread awareness. People are good. It is amazing how people can come together for a common cause if you just ask. We are so blessed to have so many wonderful people in our lives.
So thank you to everyone that is helping us spread the word this week. It has touched my heart and means more to me than you can know. Andrew is so lucky to have so many people who care about him.
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Hi Andrew, I just wanted to leave you a message to tell you that I have been thinking of you all week. Your mom and I went to the same middle school in Maryland and we were able to reconnect, after all of these years. To be honest with you, I had never heard of eosinophilic esophagitis until I read about your story on this blog. I gained so much insight and was able to educate myself which I'm so glad I did. I know that this week has been about bringing awareness to people like me, but for you, this is something you go through every single day. It must be very tough, so I'm going to be thinking of you as often as I can, and hoping for great possibilities for you.
ReplyDeleteLet me tell you about my week. On Monday, I sat down and thought about life with eosinophilic disorder. I had to REALLY think about this because food is such a big part of my life, as it is to most people. I cook almost every day and enjoy eating out to satisfy my food cravings. I thought about how I would be impacted if I wasn't able to enjoy the foods that I prepare, or had to stop ordering at my favorite restaurants. It would be really difficult to do, but one positive aspect is that I could keep a steady balance on my weight. I am on the skinny side, but I diet very hard and always try to exercise. If there's one positive aspect to ee, it is this! So I thought.
On Tuesday, Wednesday and Thursday leading up to my big day, I talked to many people about ee, including my kids, my husband (who is a physician but not very familiar with ee), and a few close friends. As the days went by, I had great anticipation for Friday, the day that I would take on the challenge to eat only grapes, potatoes, pears, pork, rice, and carrots - which is really unfair because you are not able to eat these foods right now. And I would drink only water.
It's now late Friday afternoon and I haven't had anything to eat. I have potatoes in my refrigerator but I'm unsure how I should prepare them. I doubt they can be fried in olive oil or mashed up with milk and butter. I thought of eating them plain, but without salt I'm unmotivated. This is harder than I imagined.
Keeping a steady balance on my weight is a controlled behavior that I have learned over the years, but it is entirely different from not having the choice to eat foods. I will never think of food the same way.
Awhile back, I remember seeing your photos on your mom's facebook profile. I left her a note that she has beautiful kids. This was before I knew about your story. Now that I know, not only does she have beautiful kids, but really inspiring and braves ones. I think you are the strongest boy I have ever met with immense self control. Thank you so much letting me become aware of what you are going through. It has forever changed my perception of food and I am now aware that there are many people who are dealing with this every day.
Susan B.
Susan,
ReplyDeleteAndrew and I were in the hospital Thursday and Friday, so I just now had the opportunity to read your letter to him. He was amazed that someone that he has never met was thinking so much about him and actually tried to eat like him for a day.
I can't tell you how much your letter means to me. You have truly touched my heart and your willingness to spread awareness and take on Andrew's challenges means the world to me. Thank you for taking the time to care. It means more to me than you will ever know.
Blessings,
Ginny