“I don’t have a bleeding disorder,” said my oldest daughter, MaRee, last summer after I told her that I was signing her up for a joint teen retreat/camp hosted by Hemophilia of South Carolina and Hemophilia of North Carolina (HSC/HNC). “I know you don’t have a bleeding disorder, but they are allowing siblings to attend. It will be fun for you and your brother to go together,” I insisted. I don’t know why I thought telling her she was going to camp with her little brother, Marques, was going to tempt her to go.
MaRee’ has grown up like many non-hemophilia siblings hearing “Watch out for your brother! Don’t hit your brother with a toy, he could get a bleed! “Not right now, I have to give your brother his factor,” and all sorts of other reminders that their sibling needed “special treatment.” Certainly on top of all that, she must have thought that going to camp with your little brother was simply not cool! I felt it was important for her to attend the teen camp, not only for the opportunity to get to know the other teens in our local hemophilia community, but also as a possible carrier, and I know it would be an experience she would hold on to for years to come.
Marques, my son, bonded with other kids with bleeding disorders at Camp Burnt Gin in South Carolina three years ago, and had an awesome time. It’s hard to believe now that I had to force him to go! Unfortunately, siblings are not allowed to attend that particular camp session, so the HSC/HNC teen retreat would be the only opportunity for MaRee’ to go to bleeding disorder camp, Unenthusiastically, MaRee’ went to camp with her little brother. But when they returned it was like Marques had grew like a “Chia Pet” before MaRee’s eyes over the weekend. He blossomed, and so had MaRee’s view of her younger brother.
“Mom, I got to see my little brother in a whole new light,” MaRee’ said after I asked her how she liked camp “I got to see what an excellent communicator he is, how bright and funny he is, and not just as my annoying little brother,” she went on to say. I was astonished. MaRee’ had a chance to really listen to her brother talk about how having hemophilia didn’t define who he was. I think non-hemophilia siblings can get “tunnel vision” about their sister/brother since the disorder is so often put in the forefront of family life due to regular visits to the hematologist, hospital stays, bruises, factor supplies taking up closet space/fridge, and prophylaxis. As a mom, and especially when Marques was a toddler, my daily focus was to make sure all accidents were avoided so he would not get a bleed!
Giving MaRee’ the opportunity to listen to the experiences of not only Marques, but other teens with bleeding disorders and siblings, helped her understand why I encouraged her to go to camp. (Yes, mom was right! Score one for mom!) Also, to MaRee’s surprise she really bonded with a group of kids she met at camp and now they Snapchat each other daily!
MaRee’s attendance at the teen retreat gave her a passion to really be an active participant in the hemophilia community. She wants to advocate for her brother. Since teen camp, MaRee’ has attended an NHF Annual Meeting and Hemophilia of South Carolina’s Advocacy Day for the last two years — at her own request. I also explained to her that she will be a stronger advocate than I was if she has a son with hemophilia; she is gaining knowledge that I didn’t have when I became a “hemo mom.” When her biology class was discussing hemophilia MaRee’ videotaped her brother’s doing an infusion to share with the class to really discuss what it meant to live with a bleeding disorder.
I didn’t have to try to convince MaRee’ to go to the teen retreat this year. When she started her summer job this year, one of the first things she informed them of was that she would need the weekend of the teen retreat off! And once again, Marques and MaRee’ had a great time at the HSC/HNC joint teen retreat together. After camp this year, MaRee’ told me, “I not only love my brother more, but I respect him more as well.” What little brother, bleeding disorder or not, wouldn’t want respect from his big sister?
I think all siblings should experience going to camp and learning how truly affected they really are and how much they also belong and are needed advocates in our hemophilia community.
Lovee’ lives in South Carolina with her husband, Charles, and her children, MaRee’ (16), Marques (12), Laithan and Layla (5).
*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.