Parent caregivers must fill their well with self-care
With combined roles to play, we risk running low on our ability to give
I recently hosted a retreat for United Methodist deacons from New Mexico and Arizona, where we gathered to share our ministries, develop new relationships, and connect.
Deacons are called to serve beyond the church walls, and I’m always amazed at the work we do in the world. At the retreat, chaplains, nonprofit directors, teachers, and mental health professionals represented a few of our many professions. One deacon had developed an especially powerful program for the differently abled. The work we do for others is tremendous, but we all share a common struggle: We don’t take enough time for ourselves.
These people in the ministry and parent caregivers have some strikingly similarities. Both pour so much of themselves into others that their well runs dry. I know that familiar feeling, not only as a deacon but also as a mother of sons with hemophilia.
Parenting and caregiving
When caring for a child with hemophilia or another chronic condition, we draw from our deepest well, one filled with love, patience, and hope. If we continue to draw from the well without replenishing it with rest, exercise, creativity, or quiet moments, there will come a day when we have nothing left to give.
Raising children is never easy. Yet the snuggles, giggles, and the wonder of seeing a child experience the world are worth the sleepless nights. But when a child has a medical condition, parenting changes.
When my first son, Julian, was born in 1996, his diagnosis of severe hemophilia A was frightening. I poured myself into motherhood — the diapers, bottles, teething, and stepping onto toys — all the ordinary chaos I expected. But then there was something more.
How would I know if Julian were having a bleed? When he did, what would the first infusion look like?
At the time, I was teaching full time, and my concerns for Julian were overwhelming. My husband and I stayed close to home when we weren’t working, always prepared to call the nurse if a bleed occurred. I felt guilty for feeling trapped.
When my second son, Caeleb, was born in 2006, his journey with hemophilia was more complicated and devastating. His hospitalizations were frequent, with swollen joints that caused uncontrollable pain. An inhibitor wreaked havoc on his body and our family.
The years of complications, hospitalizations, needle phobia, and numerous surgeries left scars on Caeleb and our family. Along the way, I felt myself change. Not only was I a parent, but I became a caregiver. That was a profound shift.
I felt guilty for feeling the caregiving role take over my parenting role. But there were times I became numb to emotion because if I started to cry, I feared I’d never stop. The wall I built around my heart was not out of coldness, but necessity. The endless nights of hearing Caeleb cry in pain and watching him struggle while he fought teams of nurses who held him down to place an IV was too much for my heart. The wall protected me.
Bleed after bleed and hospital stay after hospital stay took a toll on me physically and emotionally. I’d look at myself in the mirror and not recognize the woman staring back at me. That’s when I realized I needed some time for myself.
Most parent caregivers do not take time for themselves. Going to the gym or getting a manicure often causes feelings of selfishness. Many of us have been conditioned to see self-care as an indulgence rather than a necessity.
Here’s a challenge:
When a friend or family member asks if they can be of help, let them. Ask them to sit with your child or take them to a movie to give you an hour to sit at Starbucks. Let yourself be still and take a deep breath.
Filling your well is not an act of selfishness, but an act of love and devotion for your child, your family, and your spirit.
So I ask you, what have you done lately to fill your well?
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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