I am a woman who is extremely blessed. I have a roof over my head, food on the table, a little bit of money in my pocket, and two amazing sons. The best part is that I have an amazing husband to share these blessings with on this crazy journey. We have been together for almost 30 years, and he is truly my best friend and the love of my life.
When our oldest son, Julian, was diagnosed with severe hemophilia, my husband, Joe, stepped up to the plate to find out everything he could about hemophilia. He was an advocate before he even knew what we were battling. I don’t know what I would have done without him in those early days of not understanding what it meant to have a child with a rare, genetic bleeding disorder. He brought calm to a time filled with anxiety and fear.
When our second son was also diagnosed with severe hemophilia, Joe helped me through the second diagnosis, which was more traumatic for me than the first one. Never mind that Joe was also feeling anxiety, fear, helplessness, and all the crazy emotions that go along with a new diagnosis. He was the husband who held our family together and continues to do so after all these years. Joe was the first to access each son’s port and would let each of them “practice” on him while they were learning to self-infuse.
I have been amazed over the years when I have seen many dads take a “hands-off” approach to their child’s bleeding disorder. So often I have seen the mother be the one who was the main caregiver in the family. “My husband doesn’t like needles. It’s easier if only one of us does the infusions.” My husband and I have never even considered that only one of us would handle hemophilia in our home. When my husband was traveling on a weekly basis for three years to finish his master’s degree, I took the lead with the care of my boys, but he would infuse as often as possible so as not to lose his skills. There has also been a season or two when Joe would be the one handling the infusions most of the time. Regardless of our circumstances, we would make sure that neither of us would be hands-off for too long.
This Father’s Day, like all the others before, I took a moment to give thanks for my husband. Yes, he cares and provides for his family, but when it comes to hemophilia, he has never considered not being a part of their treatment. He asks questions, finds solutions, and loves his boys like no one else can. He has been patient with Caeleb through the awful years of dealing with needle phobia. He would sit and wait for Caeleb for an hour until he was ready for the needle to go into his port. And he would cheer Julian on in the early days of self-infusing.
Today I give thanks for the husbands, spouses, partners, brothers, aunts, uncles, and all of those who help a parent care for their child with a bleeding disorder. It’s a difficult road to travel, and I give thanks that I have a partner in my life who shares the responsibility.
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.
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