People are required to earn a certification or license for numerous activities. To drive a vehicle, a person must secure a learner’s permit or driver’s license. To become a lifeguard, a person must go through training to earn a certification. Even working a part-time job in the food industry often requires a food-handling license. When deciding on a career path, people may look into trade schools or colleges, depending on what they need to accomplish to earn the required certification or degree.
When it comes to parenting, we often receive on-the-job training. Throw in a rare bleeding disorder, and the job intensifies.
As the mother of two sons with severe hemophilia and inhibitors, my perspective on what qualifies as success differs from what I had once imagined. Before having children, I thought that success meant having kids who made straight A’s in school. These children would be involved in every activity possible, strive for perfection, and find their way to a career that offered great wealth and admiration. Applying extremely high benchmarks to success works for some people, but I have learned that my concept of success is different from that of my sons.
My former grand ideas of success never included hemophilia as part of the equation. A rare disorder brings an assortment of different scenarios. The questions began to multiply when my sons were diagnosed. How will my son be accepted if people know about his hemophilia? Will he be an outcast? Will hemophilia keep him from participating in the things he wants to do?
It took quite some time for me to realize that there was only so much I could control. Not having control is frightening when raising a child with a medical condition.
Instead of academic success, my sons’ health was sometimes most important. When friends and family posted about their children’s achievements on social media, I found myself envious. I wanted to post and brag, but my social media posts became a documentation of our constant trips to the hemophilia treatment center and admissions into the hospital. I was not living the life I had planned to live as the mother of two sons.
Author Emily Perl Kingsley wrote a beautiful essay that explains what it is like to raise a child with a disability. The beauty of the piece is that the parent realizes that while the trip they had dreamed of taking (parenting) did not happen, the journey they ended up on is filled with beauty and joy. It is different, but no less beautiful.
Parenting is a difficult job. My heart has been broken more times than I can count. From the times my sons said something ugly to me, to the times I sat at their bedside as they cried in pain, my heart has endured much grief. But the beauty of parenting is in the grace and forgiveness.
Fortunately, my anger at my sons is not long-lived. The love I have for my boys is greater than any misunderstanding or failure. Nothing can keep me from loving my sons. It is a love that is hard to express.
If I could take away the pain that my sons have endured from hemophilia, I would do so in an instant. However, if the journey of living with a bleeding disorder has contributed to making them the unique, exceptional, creative human beings that they have become, then perhaps hemophilia is a must.
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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, and are intended to spark discussion about issues pertaining to hemophilia.
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