Bleeding Disorders Caregivers

Unbroken: How a Mother Finds Strength While Facing Her Sons’ Hemophilia

The following is a guest post from June, hemophilia account manager at BioRx

 

As I pushed my son Luke in his wheelchair on the first day of school, I watched his peers look at him, staring, and I felt Luke’s sadness. I had witnessed that same look of pity on friends’ faces when his brother Joey was on strict bed rest. It occurred to me once again that we don’t like to face sickness or perceived weakness in our culture. As humans, we hate brokenness—especially when we are taught to revere independence and strength.

We spend our lives hiding the broken pieces from one another, yet sometimes our broken parts can’t be hidden.

It’s easier to look away—to not be drawn into another’s pain for fear that we will have to feel something that hurts deeply. Hemophilia forces us not to hide.

My boys try so hard to be strong and positive. They rarely—if ever—complain. They are not victims. But, sometimes, the pain is too much to hide and I see the limp (or “swagger”). Their joints become too swollen, and then it becomes so unbearable that they are forced to slow down.

My sons get an infusion almost daily in an effort to be “normal” for four to five hours, a chance for their bodies to repair bleeds and to reduce the risks of a spontaneous, life-threatening hemorrhage of the brain or abdomen.

untitled (1 of 1)

With each diagnosis came fear.

When Joey was first diagnosed, I remember learning about spontaneous bleeding in those with severe hemophilia. After the diagnosis, instead of being a fun word, “spontaneous” meant I couldn’t predict or control when something might occur inside one of my babies. It meant every headache was suspect. Every bellyache had to be watched carefully.

In our world, “spontaneous” is the dark monster that lurks under the bed. It’s the bleed that interrupts vacation plans. The bleed that requires hospitalization and pays no mind to whose birthday or which holiday it may be.

When Joey was first diagnosed, through tears, as the doctors gathered us in a small conference room (which they always seem to do when there is bad news), I asked the question: ”Will my son die from this?” And the answer was this: “We try to manage hemophilia the best we can. Kids die from the complications, not from hemophilia.” As a new mom, I sobbed. The doctor’s words still echo in my head sometimes.

The first several years after his diagnosis, all I could do was cry. Then, in time, we adjusted. Years later, when I got pregnant again, people were horrified that I would bring another child into this world who could have it. This time, after Luke’s birth, my doctor asked everyone to leave the room and she closed the door. I knew what was coming. My heart broke. She cried with me. I was surprised at my own tears. Wasn’t I prepared for this? Hadn’t I known this was a possibility? Wasn’t I done with this thing called grief?

 

Twelve years later, this is what I’ve learned.

The grieving is never fully complete when you see your kids struggle with pain or illness. The grief bubbles up again in some form each time they have pain from a joint bleed, or when infusions run long with lots of pokes. When other kids say they don’t want to choose them for their team because they want to win. Or when people stare because they are in a wheelchair or on crutches. When you struggle with the wheelchair or when your sons are sad because they have to sit out while the others play football. When your son wonders whether girls will want to date them because of their hemophilia. The grief takes different shapes at different times, but it never really goes away.

So, we’ve learned to adapt. We’ve learned to appreciate the good. We’ve learned to value our care providers and most especially our homecare company, which has become not only part of our support, but part of our family.

 

untitled (1 of 1)-2

My heart longed to help others on their journey.

When I was asked to work in the industry, I was hesitant at first. I wasn’t sure working in the industry was what I wanted. There are lots of stories about companies that don’t truly care about their patients, only about profits. But then I got a call from a new mom who was struggling with her son’s recent diagnosis. Her hemophilia treatment center put her in touch with me and I began to go over to her house daily.

At first, I would sit with her as she cried. Then I began to help her learn about her son’s condition. Eventually, she let me infuse her son when she was too frightened to do so. Soon, I felt a tug on my heart that this was my calling, my mission.

My purpose and reason for being was clear. I never wanted any person to feel alone in managing the disease or the emotions that came in coping with it. I decided I wanted to be a part of a company that strives to make a difference in the lives of those they serve.

My homecare company continuously looks for ways to serve patients as well as educate. It may be visiting a family whose child is in the hospital. Or sitting with an older man who has hemophilia, hep C and HIV who is in his last years and just needs some emotional support. Or speaking with a mom who texts in the middle of the night because her young child has a nosebleed that won’t stop.

Other times, we serve by helping find resources for families who can’t pay their medical bills, or helping support the teenager who is going off to college who thinks he doesn’t need to infuse, or calling to check in with the single mom struggling to handle the day-to-day demands of the disease. Regardless of who it is or what their needs are, I work for a company that strives to do the right thing for the patient. I see my job not just as delivering life-saving medicine, but more importantly, delivering hope and compassion.

We choose not to turn away from our patients’ pain. Instead, we enter into those painful and vulnerable places, and say, “I am here to sit with you in the dark and lonely space until the feeling passes and the pain recedes.”

 

The information herein may not be construed as medical advice. The medical information on this site is provided as an information resource only, and is not to be used or relied on for any diagnostic or treatment purposes. It should not be used as a substitute for professional diagnosis and treatment. It is best to obtain medical recommendations from your physician.

Twitter