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Infusing Love: A Mom's View - A blog dedicated to mothers of children with bleeding disorders.

When Thomas was in preschool, my family and I attended our first HFA Symposium. One of the educational sessions featured a panel of speakers who shared how to best prepare yourself, your child, and your school for a child with hemophilia. I took copious notes during that session because we were only two years away from Thomas entering kindergarten and I felt we had to arm ourselves with as much information as possible.

I knew we would ask for a meeting with the school staff to explain hemophilia and I felt pretty confident in my ability to explain the disorder to adults. What worried me was Thomas鈥檚 ability to advocate for himself as a kindergartener. Would he be able to speak up and tell an adult that he had a bleed? Could explain to them how he knew he had a bleed? Could he even say to them, 鈥淚 have severe hemophilia?鈥 I was most concerned with how the adults would handle hemophilia.

It turned out that he could speak to the adults. He transitioned quite well from a darling little preschooler to a mischievous kindergartener. His first year of school went exceptionally well, with few bleeds, few missed days of school, and a supportive school staff. He even learned how to mix his factor before he started school that year, so I sent him to class knowing that if I got a call that he needed an infusion, he could at least get factor mixed while I drove over to the school.

He switched schools the next school year and again, we were blessed to have a school staff that was understanding and vigilant about his well-being. However, hemophilia was having a hissy fit that year and he bled often, was hospitalized several times, and absent frequently. About mid-way through the school year, Thomas came out one afternoon, frustrated because his classmates kept asking him what was wrong. 鈥淚 keep telling them I have hemophilia,鈥 he said matter-of-factly, thinking that he was all too familiar with what that meant and that they should be too. I explained that other six and seven year olds had no idea what hemophilia was. Knowing that he had a show and tell project coming up, I encouraged him to teach his class about hemophilia and show them an infusion. Thomas balked initially, unsure that he wanted to expose himself that much to his classmates. I told him that if he shared with his whole class once then maybe he could answer all their questions one time instead of having to answer each person every time he had a bleed. That piqued聽his interest 鈥 the crux of the matter was that he was simply tired of having to explain hemophilia over and over again.

The day Thomas did his show and tell I sat in on the class to offer back up support in case he needed it. I sat in the back of the room, beaming with pride that my first grader was advocating for himself, and teaching his classmates about hemophilia. I kept a copy of the script Thomas wrote for himself:

Today my show and tell is about hemophilia. I have hemophilia and would like to explain more about it to you.

The 3 things I would like to teach you are:

1. What is hemophilia?

2. What does having hemophilia mean?

3. How do you fix it?鈥ㄢ

Hemophilia means your blood doesn鈥檛 work right. Your blood is missing factor. So when you get hurt, or sometimes for no reason at all, you get really bad bumps and bruises. My blood is missing factor VIII. I was born with hemophilia. There isn鈥檛 a cure for hemophilia, but you can control it with medicine. Because I have hemophilia, I have to be careful about making safe choices. I wear a helmet on the playground to keep my head safe. I can do most everything other kids do. Sometimes I get bad bleeds. Bleeds can happen even on the inside of my body like in my ankle or knee. Those hurt really bad and sometimes I have use to wheelchair until I鈥檓 able to walk again. I鈥檒l have hemophilia for my whole life. But, my parents and I trick my body everyday so that my blood thinks it works right. I have to get needle pokes either in my arm or port. We infuse the missing factor to trick my body. Let me show you how I mix my medicine and infuse my factor every morning before school. First I have to wash my hands.

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At this point Thomas mixed his factor and infused his already accessed port. As he pushed the factor in, one of his classmates passed out. Apparently the 鈥╬oor child had a needle phobia and even watching someone else was too much for him to bear. After we got that child back upright and the school nurse took care of him, Thomas concluded his show and tell with a short question and answer session. It turned out that Thomas didn鈥檛 need me there for back-up support at all.

Thomas spent the next six school years at that school. After his infusion demonstration, those kids, including his needle phobic friend, always hadhis back. They were safe around him, they helpedhim play catch-up when he missed school, they stayed inside during recess with him when he didn鈥檛 want to take the wheelchair outside, and they visited him in the hospital. Those ten minutes spent in first grade sharing with his classmates taught them a little bit about Thomas and it gave Thomas a little bit of power over an unpredictable and uncontrollable situation. It showed me that sometimes as moms we have to take a step back and let children advocate for themselves, and that they can do it remarkably well 鈥 even if one kid passes out in the process.

HFA鈥檚 Back to School toolkit is an excellent resource for parents to use when educating the educator about bleeding disorders.

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Sonji lives with her husband, Nathan, and three children Nora (14), Thomas, (12), & Natalie (10), in Colorado.

*Note: 鈥淚nfusing Love: A Mom鈥檚 View,鈥 is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.

 

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