When I was in high school I was interested in taking Italian classes as I loved the language and had the dreamy idea of living one year in the beautiful Bel Paese. My dream never came true, however I have always remembered a phrase I learned in my class: Sbegliando S’Impara. Perhaps I was destined to remember the phrase, for many years after. I can share with you what it means to me.
I am the mother of a 19-year-old with Hemophilia A. I remember as a teenager hearing the word hemophilia in television commercials showing one of the forms of HIV infection in the 80’s; not knowing that many years after, my older son would have hemophilia. Knowing about the limitations and care that a hemophiliac child should have, I decided that this would not be the history and future of my son Sebastián, who at 2 years old, attended with courage and confidence, a Montessori preschool. The teachers were informed about his condition, thanks to the support of René and Yolanda who then presided over the hemophilia association and trained the school staff. Sebastián participated in exercise classes, music, swimming, and even in bounce houses at birthday parties, albeit against our will on that one. At no time did I feel Sebastián was different, until he reached the fourth grade.
Sebastián dreamed of being on the basketball team at his school. When he was accepted, he played until he had his first fall, and the coach decided he should not be part of the team. However, he gave my son the alternative of participating by scoring the points of the game. At that point, my son decided he preferred not to be on the team if he could not play and showed interest in tennis lessons. At that time prophylaxis for Sebastián was non-existent. Sebastián received his medication on demand; so, after a bleed, factor was administered. We wanted our child to have a “normal” life, so we continued to send him to school after infusing him. At the time I was a teacher at the same school, so I thought it would be best that he did not miss his school days. Sebastián attended class sitting at his desk with cold compresses on his ankle and did not miss his opportunities. I remember Sebastián, accompanied by a classmate who took him to the restroom, using the teacher´s office chair as a wheelchair. At that time, I saw it as something normal, but by erring you learn. The problem was the mistake we made in not taking those bleedings seriously and advocating for our son to be on prophylaxis. That time lost cannot be returned.
I cannot turn back time. However, I can encourage you to be proactive parents and take your child’s bleedings seriously. If there is a bleed, your child should stay home and rest. Today, with the advances and technological accommodations that the pandemic has forced us to have, virtual education can help children who must stay home.
My son Sebastián is currently 19 years old. He is a wonderful hardworking young man with a whole life ahead of him. His right ankle, which suffered so much bleeding in fourth grade, is injured. Sebastián has pain in his ankle and walks with difficulty. I see him suffering and I think about all those weeks he attended school when he possibly should have stayed home. Sbeliando si impara.
Our joints are essential for movement, and these must be treated with responsibility, especially a child with bleeding disorders. Exercise and good nutrition are key, and you should take advantage of these while your child is still young, and you are in control of their diet, extracurricular activities, and social activities. I recommend directing all energy to swimming and other appropriate activities. There are many alternatives you can choose from. I believe that our role as parents is to guide our children and show them good choices that will have positive consequences in their future.
And what does that phrase I learned so many years ago mean? By erring you learn. The parents of a hemophiliac patient cannot afford to say that we learned our lesson by making mistakes, but we must learn from other people’s mistakes. Staying in support groups such as hemophilia centers and foundations is the key to help us be educated and grow as caregivers. I invite you to keep up to date and share your experiences. Some of us call them mistakes and others call them experiences. May this learning help us help others so that our children have a better quality of life.
*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 provider
