National Family Caregivers Month is a time to be seen, heard, and loved
To parents of children with chronic illness: I see you, this month and always
As a hospice chaplain, I visit patients and their families as they are in their last months and days of life. It is humbling. Whether they’re at home or in a nursing home, these patients have something in common: They are being cared for by others.
Family caregivers are the people who go above and beyond to help sick or disabled loved ones navigate daily life. But adults aren’t the only ones who need this kind of assistance; millions of children with special needs require extra care, often from their families.
Raising sons with severe hemophilia with inhibitors is a journey I never thought I’d experience. As a 20-something, I envisioned a life with healthy children, the perfect job, and a white picket fence. But life doesn’t always turn out as expected.
Becoming a caregiver opened my eyes
I remember going to the Houston Zoo many years ago, before I had children. It was a beautiful day, and my then fiancé and I were walking hand in hand without a care in the world. Most people I passed on the sprawling paths were families, and one in particular caught my eye.
A couple and their three children were enjoying the day. One child was in a wheelchair and appeared unable to move their body or turn their head — yet the parents talked to this child in the same way they spoke to their other children. As a young woman who didn’t have experience with special needs, I remember feeling sorry for the family and looking away.
Now, as a woman with many years behind me, I see families like that family at the zoo. I mean, I see them. I know what it’s like to have a child with extra medical needs.
My first instinct is to minimize my experience and say that the family at the zoo had a much more difficult journey than I’ve had with my sons. In some ways, this may be true, but at the same time, I have more in common with that family than many can understand.
Being a caregiver is challenging. My boys each had their struggles with hemophilia. My youngest son, Caeleb, endured the worst of it. He spent a year in and out of the hospital, which meant our family spent every holiday in his hospital room. Night after night, hearing my son scream in pain shattered my heart into a million pieces. Watching him fight when a team of clinicians had to restrain him to start an IV sent me to the hallway in tears. Ports, bleeds, complications, fear — it seemed to never end.
I believe that, above all, we each want to be seen, heard, and loved. None of these things cost money or require special skills. I wish I could go back to that family at the zoo now with my years of experience and tell them that I see them. I understand.
In honor of National Family Caregivers Month, the documentary “Unseen: How We’re Failing Parent Caregivers and Why It Matters” will be available to stream throughout November. The purpose of this project is to raise awareness of caregiving issues, educate communities, and increase support for caregivers.
Caring for children with chronic illnesses is not a calling but a necessity. Caregivers need support, resources, and a deeper understanding of the struggles they face. I encourage readers to visit the documentary’s website for a wide range of resources for caregivers and advocates.
I see you.
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.