There is a children’s picture book called “How Big is Baby?” The response to the baby is, “Baby is sooo big!” It is a great book as it empowers our children to know that they are a large part of life. We remind them that the love we have for them in our hearts is vast. Hopefully, the care and support they receive instill in them that lives matter and that in this grand universe, we are all sooo big. We all share an interconnectedness in the grand design of life.
I mention the book because I often wonder if I restricted my children too much. Did I worry more about treating the disorder; was I concerned less about fostering hope and wholeness? I believe that I am not the only person to ask that question. I also know many others who worry about the same issue. The nagging question that often comes up is, “Did I do enough for my child?”
Those of us who raise children with chronic illnesses struggle to find an appropriate balance between healthy psychosocial development and care in treating our children’s disorders or diseases. We want to allow our mighty humans the freedom to choose what to play and with whom to play. But when we let our sons and daughters go out in the world (OK, I am talking here about the neighborhood), we take on a deeper sense of concern. Will he do something way too risky and have a bleed? What do I do with this need for freedom?
I look back, and with my children’s very first breath I accepted my new reality: Never again would I be free from worry. I have people in the world who share my blood. Each time one of them leaves the house, I worry until they walk back through the door.
When I ask, “How big is baby?” the question should be directed back to me as, “How big is Daddy?” My reply is: “Big enough to hold you in my arms and assure you that hemophilia will not beat us. We will stand together and face every challenge head-on. But what is more important than what I say is what you experience. May I demonstrate by my actions that I love you more than any other person on this planet. I am your testimony that your life carries worth and value. In my eyes, you are sooo big.”
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.