The Grief I Experienced Is Something I Would Endure Again

Caeleb, the child doctors said I’d never have, has changed my life. He is 16 and thinking about his future.

That may sound like a normal thing for a 16-year-old, but I was unsure about his future with his hemophilia A. His life with this disease has been challenging and filled with pain. With target joints, frequent bleeds, numerous factor products, and even an allergy to factor VIII, he spent his elementary-school years suffering at the hands of a nasty inhibitor, which renders replacement therapies ineffective.

I remember sitting by his hospital bed, praying that his pain would be alleviated. I spent many nights watching the numbers on the monitors fall as his oxygen saturation would decrease. I would jostle him, hoping he would take a deeper breath, allowing the numbers to rise. Fortunately, this worked.

I understand the pain of seeing a child suffer from complications of hemophilia and an inhibitor. While I wish my son didn’t have hemophilia, I give thanks for his journey today.

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When I dreamed of having children, I had a picture that I now realize was through rose-colored glasses. I imagined my children involved in sports, playing with friends, having a deep interest in the performing arts (we’re a musical family), and enjoying school every day. My sons would jump off the school bus to run in and tell me about their days. Yet this is not exactly what happened.

Needles and ports became part of our vocabulary, and sending my firstborn son, Julian, to day care with a port became our routine. (Julian also has hemophilia A.) We had daily infusions with Huber needles, which resembled fishhooks, to help our children get the necessary factor into their bloodstream. Holding our children down to access their veins was often part of a typical Saturday afternoon. As for bounding off a school bus, Caeleb’s right knee and ankle continue to make steps of any kind challenging.

I know that I’ve grown as a mother as I walk alongside my sons to care for their bleeding disorder. Yet my idea of parenting has been challenged. Emily Perl Kingsley wrote the essay “Welcome to Holland,” in which she describes life raising a child with a disability. Through metaphor, having a baby is compared to a dream trip to Italy, which is soon detoured to Holland, where everything is simply different.

I appreciate her words because my initial dream of going to Italy changed with a hemophilia diagnosis.

Yes, I would rather my sons had never suffered pain and limitations due to their bleeding disorder, but as I sit back and admire the men they’re becoming, I wouldn’t change a thing. I’d do it all over again.

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.