How caregiving evolves as our family grows and changes
Our roles may change, but I’m grateful we get to keep finding our way together
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When one person has pulmonary hypertension (PH), family dynamics change for everyone.
Since my diagnosis in 2005, my husband, Manny, and our daughter, Kayla (my “KK”), have experienced those changes alongside me. But our family hasn’t stood still while managing PH. Our relationships, responsibilities, and needs have continued to evolve.
This year, KK became a mom, and I became her son Ryker’s Mimi. Watching my daughter care for her baby has given me another reason to appreciate her and another reminder that the people who care for me need care, too.
Still his wife, still her mom
Manny and I have been married for 34 years and counting. PH has been a part of our marriage for more than two decades, but there is so much more to our life together.
When I asked him how we balance being partners with giving and receiving care, Manny reminded me that while we’re both caregivers, we’re also two people who fell in love and deserve to keep that relationship alive.
“Intimacy takes on a whole new meaning with PH,” he told me. “Some days, a hug, holding hands, a kiss, or simply sitting together cuddling on the couch can mean more than an elaborate romantic gesture.”
Those ordinary moments matter. So does remembering to ask what he needs instead of allowing every conversation to center on my health.
With KK, there’s another layer. Receiving help from my daughter can bring both gratitude and complicated feelings. The instinct to protect her doesn’t disappear because I’m the one who needs support.
Now, she has a little family of her own. I want to be there for her as she finds her way through motherhood, even when my energy, breathing, or treatment side effects limit how I can show up.
KK told me that one of the greatest ways I can support her is by loving her little boy.
“Seeing him cared for and loved by the same woman who raised me is such a full-circle moment,” she said. “Getting to watch you be his Mimi is a gift I don’t take for granted.”
She also shared something I needed to hear: Although becoming a mother has expanded her heart, it has changed how much time and energy she can give to other areas of her life. She can’t always stop by several times a week or have the long co-working dates we once enjoyed.
The biggest way we can support one another during this season, she said, is through “grace, understanding, and knowing that even when the time we spend together looks different, the love hasn’t changed one bit.”
Finding joy inside the uncertainty
KK was young when I was diagnosed. When I asked what frightened her most, she said it was not knowing what the future held or whether her mom would still be here.
Yet, alongside that fear, she remembers the small moments that helped our changing life feel safe: watching “Gilmore Girls,” getting chicken tacos after school, wandering through Target, and laughing together in the parking lot with my wheelchair.
We found ways to make our new normal fun.
Manny also gave her space to express the big, frightening feelings that we couldn’t always put into words. We learned that we didn’t have to have every answer. Sometimes, we simply needed to be present.
“We took turns holding each other through some of the hardest moments of our lives,” KK said. “The beautiful thing is, we still do.”
Making room for everyone’s needs
My recent hospitalization with pneumonia brought caregiving into focus again. Coming home didn’t mean I was immediately ready to resume everything. Recovery required patience from all of us, including myself.
I’m deeply grateful for Manny and KK’s support. I want all of us to be able to say when we’re tired, need help, or must change our plans. Their needs deserve a place in our conversations, too.
When I asked what advice they would offer another family learning to navigate caregiving, their answers shared a common thread.
Manny said caregivers must learn to step back, breathe deeply, and remember they aren’t alone.
KK emphasized patience, grace, gratitude, and communication. She also reminded me that gratitude should move in both directions. There is something special about being trusted to care for another person. At the same time, caregivers can recognize the effort behind the seemingly small things a loved one still manages to do. Folding laundry might look like an ordinary task, but on a difficult day, it may require every bit of energy that person has.
Caregiving isn’t only about meeting someone’s physical needs. It’s about helping one another feel loved, valued, and seen through every season of life.
During National Family Caregivers Month, I’m especially grateful for Manny and KK, the care they give, the laughter we share, and the ways they keep me connected to the life I love.
Our roles and responsibilities will continue to change. I’m still Manny’s wife, KK’s mom, and now Ryker’s Mimi. Caring for them will always be part of who I am.
Our family keeps growing and changing, and I’m grateful we get to keep finding our way together.
Note: Pulmonary Hypertension News 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 other 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 Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark di
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