In my experience, raising two children with a chronic illness includes the usual worries that parents and other primary caregivers often face. It also creates issues that directly address medical needs and concerns related to treatment.
For instance, not every family deals with spontaneous bleeding into the joints. For those who do not have bleeding disorders, decisions to participate in various activities do not include weighing the risks of injury to multiple parts of the body, such as the head, the stomach, or the ribs. The effects of chronic illness lie at the heart of every choice that we make.
One of the most important struggles that my sons continue to face include issues of self-esteem. “MacDonald the Older” once came to me and asked, “Dad, how can I be a part of the group when no one is like me? No one else infuses. Everyone gets to do anything they want to do.” Since we treated our son prophylactically on a daily basis, he could not spend the weekend at a friend’s house or go on faraway trips with friends and family. Excluding our home care nurses, my wife and I were the only people who accessed my son’s port-a-cath. The risk of infection proved too much for us to allow others to infuse.
Faced with the health challenges that came with treatment, the last thing we wanted to do was impede our son’s psychosocial development. The critical lessons that we learn from our friends are part of growing up. We learn to feel connected in the world over time as we invest in developing relationships. “MacDonald the Older” felt like he got the raw end of the deal. How could he bond with others while tackling issues foreign to everyone around him?
As parents, our boy’s emotional well-being became the center of our thoughts. We had enough medicine to treat the bleeding disorder, but we quickly realized the medication for happiness and wholeness proved just as valuable. We reached out to members in the bleeding disorders community for help. Our small circle of friends gave us new insight into the daily issues facing our boys.
By providing opportunities for our sons to bond with one another, our circle quickly grew into a family. Together, we celebrated milestones, encouraged one another, and developed a sanctuary; all of us found respite in each other’s company. Our children understood one another’s struggles. They loved being completely open and free. Without realizing it, both children and adults found safety among our dynamic group of friends. Their self-esteem bloomed the more they had opportunities to cultivate friends living with similar issues.
Another way in which our children developed emotionally was at hemophilia camp. For one week a year, we sent our mighty warriors off to an event that is sacred to the bleeding disorders community. Our hematologist, nurses, and other care professionals provide a safe environment for them to discover different aspects of growing older and wiser. Our children learn how to manage their care and develop friendships with people facing similar issues. Learning from and spending time with their peers provides crucial insight into life’s lessons.
My wife and I consider what our sons learned from their experiences as critical in their overall development. We noticed a marked change in our boys’ self-esteem as they began to transition from children to young men. When they returned from camp each year, we noticed that our sons walked with a new sense of confidence. Wisdom replaced insecurity and hope cut through feelings of despair. They walked with far more assurance than they did before attending camp.
We have a family mantra in our home that celebrates our journey to wholeness. We believe that a complete person must possess both physical and spiritual well-being; they must combine to form the entire picture. One topples without the other and gives way to a feeling of uncertainty and fear. A healthy soul possesses self-esteem that reminds us to keep everything in balance. Hopefully, we will continue to find ways to develop our children’s growth and social awareness so they can live their best lives.
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.