Infusing Love: The ABC’s of Hemophilia

Infusing Love: A Mom's View
My son, Jackson, will enter kindergarten this fall. Some parents are happy for this new journey and some are dreading it; either they aren’t ready for their child to grow up or their child has a chronic illness and they are fearful of the unknown. I’m a mix of all of the above. Jackson is my baby. I’ve never been one of those moms who sends the kids off and cries — not that there is anything wrong with that. I’m more the type that gets excited for them to meet new people, learn new things and see how they develop and grow.
I won’t lie, when 3 year old Jackson attended pre-school I was scared. I didn’t know how hemophilia would interfere in his school life. My husband and I picked a smaller pre-school where Jackson was one of six kids. We met with the staff to let them know about hemophilia and to gauge if they would be willing to work with us. They were and they even welcomed a meeting at school with our local Hemophilia Treatment Center (HTC) prior to the school year. The school staff was eager to learn about hemophilia and any special precautions that needed to be taken. The pre-school was wonderful with him; they let him be a kid and didn’t baby him. It was a great experience! Jackson's 4 year PK picture 2013
However, kindergarten is all day, everyday, with a new teacher and specials, a new nurse and a completely NEW school, <insert freak out scream here>. It’s back to Hemophilia 101 for us.
We do have a slight advantage knowing the school nurse at the new school. She knows Jackson has a bleeding disorder and called back in April as she was ordering supplies for the upcoming school year — she wanted to know if there was anything special she needed to have on hand for him. She asked what a typical day might look like and what needed to happen should he fall and have a bleed. She was also open to having our HTC come in to talk about hemophilia. To ensure that she will be able to care for him, she is preparing for his arrival. This has definitely put me at ease.  I’m a mom — I’m going to worry. …but I’m a Hemo Mom:  I know that it’s a little more involved than just buying school supplies and putting them on the bus. However, with a proper plan in place I’ll be able to send my kid, who just happens to have a bleeding disorder, to school…
You may be thinking, “Wow Jen, that’s great; you know your school nurse and it sounds like you’ve got a plan in place, but I don’t even know if our school has a nurse!” Becoming an advocate for your child begins with YOU! Meet with your child’s teacher and school staff and let them know what a bleeding disorder is and the complications that come with it. Reiterate that no, your child will NOT die from a paper cut, but that ankle he twisted on the playground may need some attention. Explain that when they hear “Teacher, my knee hurts” it should not be dismissed as attention seeking, but could be the start of a bleed. Have a plan in place for the days/weeks that your child may be out of school due to a bleed. Planning ahead helps everyone and sets the expectations for both parties. Being vocal isn’t obnoxious or overbearing; it’s being a good parent.
last day of PK
I’m off to buy some school supplies, because my baby is going to kindergarten!
Jen lives in Ohio with her husband, Joe, and their three children: Evelyn (21), Nora (14), and Jackson (7).

*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.