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Infusing Love: A Mom's View - A blog dedicated to mothers of children with bleeding disorders.During summer time, most parents feel they have some time before they have to think about an upcoming school year. However, if you are a parent of a child with hemophilia that just graduated from high school who is on his/her way to college, your worries start long before graduation. Our son Chris wanted to go out of state to college, and needless to say, this made my husband and I nervous.

For most parents of a child with bleeding disorder, you spend a lot of time educating your child’s teachers and school nurses about your child’s bleeding disorder. Just as they get settled in, they’re ready to move up another grade and before you know it, it’s time for college. Along the way you have done your best to educate everyone you can think of to make sure your child is safe. We also worked hard to make sure Chris was independent and responsible regarding his bleeding disorder, and taught him how to communicate with others.

When Chris was in high school, the school nurse was our contact and she informed his teachers about hemophilia. I was on a first name basis with the nurse, and was so thankful for her phone calls. She would call, leaving a message if I wasn’t home just to say, “Wanted to let you know Chris came in to my office today to get ice” (for whatever reason). She thought I would like to know, Chris asked her not to call. He never wanted me to worry. Of course there were calls when Chris did have a bleed, or had something happen in gym that might be more serious, but the point is, the nurse and I had great communication.

At the start of Chris’s senior year of high school, we went to a college fair looking for a school where he would be able to play baseball. We found some small private schools in Nebraska that had great baseball programs and were well known for great academics. We live in Colorado, so my first thoughts were, “What, are you kidding? I can’t let you go that far away for college! Not with hemophilia! What happens when you get bleeds?” I was sure that Chris couldn’t get along without me.

That winter, we took a road trip to visit two colleges in Nebraska. Chris found he really liked one of them and got very excited about the possibility of attending there in the fall. It was starting to feel real that he might actually move 600 miles away from home. Now what? Was Chris really ready to be on his own? Was I ready to let him go?

Chris chose to go to Doane College in Crete, Nebraska. A few months before school started the college had an open house for students and their families. That is where we meet Kelly, the school nurse. We talked at great length about Chris’s hemophilia and the fact he was going to be playing baseball. The HTC had given me informational booklets about hemophilia to help address some of her questions and concerns. Kelly assured us that Chris would be in good hands.

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Kelly set up a meeting at Doane the day before Chris moved into the dorm. In that meeting she had arranged to have the baseball coach, the team trainer, a doctor from the local clinic/ER, the dorm advisers, and a few others from the school. We explained what hemophilia is, how Chris was able to self infuse most of the time, what bleeds look like, and tried to reassure them, (and me) that he would be fine. Everyone was glad to be so well informed, and we couldn’t thank Kelly enough.

Our relationship with nurse Kelly didn’t stop there. She was always checking on Chris. She got updates from the trainer, the ER, or the baseball coach so she would know if Chris might have a bleed the day of, or at least the day after an injury. It didn’t take long before Kelly was on a first name basis with the HTC nurse and physical therapist in Colorado. She and the trainer would be the eyes for the HTC, and would relay if treatments were or weren’t working for Chris. Kelly continually went above and beyond what I ever expected a college nurse would do to help a student in their care. We couldn’t have been more lucky and blessed to have her looking after Chris.

At Chris’s wedding this last fall, Kelly made the trip to Colorado to be a part of his special day.  She was able to meet the HTC nurse and physical therapist that she got to know over the phone.  It was pretty special to have all of Chris’s “other moms” at the wedding.

Over fours years at Doane, Chris did make a few trips to the local ER/clinic in Crete for various injuries. Being a small town ER, they knew all about Chris. They were wonderful and never hesitated to call me or the HTC in Denver with concerns.

For Chris, Doane College was a perfect fit. He got to play baseball all four years he was there.  He got a great education. The professors, coaches, his teammates, and his fraternity brothers were open to learning about Chris’s hemophilia, which made his experience in college about as “normal” a college experience one could ask for. Not only was it wonderful for Chris, it was wonderful for me and his dad. We learned he could make decisions on his own, and he learned to be his own advocate. He had his struggles along the way, and at times didn’t make the wisest of choices, but they were his choices.

As other parents are getting ready to send their kids with bleeding disorders off to college, whether its a big university, a small college, or they live at home and attend a local school, remember: communication is key, just as it was with teachers and nurses in elementary school through high school. Though I’ll pass along this fair warning: as prepared as you feel, you may still need a box of Kleenex on that drive home when leaving them.

Cathy lives in Colorado with her husband, Alan, and has two adult sons, Andy and Chris. Chris has severe factor IX and is attempting to summit the highest mountains on all seven continents.

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*Note: “Infusing Love: A Mom’s View,” 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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