Times when we can be parents and not caregivers
With family moves imminent, our sons are taking on their own healthcare
Despite what appears to be a tranquil season regarding my sons’ hemophilia, I know it simmers right under the surface and could rear its ugly head immediately.
For now, life is good. As my wife, Cazandra, and I are moving a couple hundred miles away as we take on new job positions, Julian, 28, and Caeleb, 19, are focused on preparing for their next grand adventure, separating storage items from those they want handy. Julian hopes to be gone for most of the year as he continues auditioning for his theatrical endeavors. Caeleb is planning to move into a dormitory in August, so many of his belongings are going into storage. Their resilience in the face of hemophilia is inspiring.
Through the chaos that surrounds moving, we still find moments of rest. Hemophilia doesn’t enter all conversations as we make plans, which is a blessing as we’ve handled emergencies such as a soft tissue bleed, spontaneous joint bleeds, and a myriad of other complications in the past. Now the waters of their bleeding disorders are smooth and without waves. The whole family is enjoying a much-needed season of rest.
For now, Cazandra and I can shift from our roles as advocates to our roles as parents. We’re focusing on the ways we can help our grown sons as they transition from the days when hemophilia constantly stole each moment from them. We can dream with Julian and prepare him for his next audition. We can calm Caeleb’s heart as he prepares to move out of our home and into the world of on-campus living. Our commitments to our sons motivate us.
While we celebrate a new season in the MacDonald home, though, our sons’ bleeding disorders can still make their presence known. As Julian prepares to travel across the country, hoping for successful tryouts, we’re reminding him to figure out how much Hemlibra (emicizumab-kxwh) he needs to take to inject as a prophylactic regimen. Caeleb must notify the area hemophilia treatment center (HTC) of his new address so he’ll get his medication. While our sons aren’t contending with any bleeding issues now, they must maintain their health.
A new style of parenting
As Cazandra and I talk to our mighty men, we can’t help but add a little extra fuel to the fire to keep them alert to an excellent treatment plan. I asked Julian a seemingly innocent question: “Wouldn’t it be a shame to have a nasty bleed right before your last callback?”
“That would be awful,” he agreed. “Yeah, Dad, I promise to call the HTC tomorrow.”
My wife caught my eye, and we breathed a sigh of relief. I could read her mind, which was thinking, “That’s great! One down and another one to go.”
We approached Caeleb with a slightly different tack. Cazandra looked at him and said, “Remember, son, to call the HTC and leave your dorm address. You wouldn’t want to miss your film classes because of an easily preventable bleeding episode.”
“Yeah, Mom, you’re right,” he quickly responded. “That wouldn’t be good.”
As Cazandra and I left the room together, we stood on the porch in our backyard, gave each other a high-five, and said, “Damn, we’re a great team!”
We know that our sons’ bleeding disorders won’t remain silent for an incredibly long time, but in moments of stillness, we turn to each other and acknowledge each other’s gifts. We know we share the same passion for helping our sons achieve their dreams. We hug and share a tender moment of affection in this calm season, feeling the strength of our family’s unity and support.
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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