More Than a Diagnosis 💚: What 16 Years of Caring for My Grandson with Cerebral Palsy has Taught ME.
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March is Cerebral Palsy Awareness Month, and for me, it isn’t just a color or a calendar post.
It’s a big part of my life.
For 16 years, I have been a daytime caregiver for my grandson, Coen. From the day he was born, our journey began, not the one we expected, but the one we were gifted.
When Coen was diagnosed with Cerebral palsy, I didn’t fully understand what that would mean. I simply knew he was our family’s miracle, after surviving 3 brain surgeries from a brain bleed while still in his mother’s whom and a whole lot of other conditions that were difficult to overcome, he DID. We are here to do anything to make his life happy, productive, safe and fun!
Facts about Cerebral Palsy
Cerebral palsy (CP) is a neurological condition that affects movement, muscle tone, and posture. It’s caused by abnormal brain development or damage to a developing brain that affects a person’s balance, posture and how they can move their muscles
• Therapies like PT, OT and speech will be a part of his life, forever. As will Wheelchairs, adaptive equipment, adaptive clothing and personal care. • No two types of CP are the same. Some patients can run, but can’t speak and vice versa as an example of many. • There is no cure for cerebral palsy and there are no two cases the same • There is a normal lifespan for people with cerebral palsy
Things I have learned from caring for a grandchild with
Cerebral Palsy • Resilience • Patience • Unconditional love Sixteen years of lifting, advocating, teaching him new things, learning medical terms I never thought I’d need to know. Sixteen years of watching and being a part of his growth….. I would do it all over again.
The Invisible Work of Caregivers
We step in. We rearrange our lives We become nurses, therapists, teachers, and safe places. There is beauty in that role. But let me be honest — there is exhaustion too. Caregiving is physical. Caregiving is emotional. Caregiving can be isolating. And yet… it is also sacred.
Coen Is Not His Diagnosis
Yes, he has cerebral palsy. But he is also: • Funny, never gets tired of the same thing. • Determined • A brother • Loving • Smarter than people expect He has taught me that progress doesn’t always look like what the world celebrates. Sometimes progress is: Not being scared of a situation or task any longer. Holding a pencil, typing a word or sentence. Communicating a need. Having a back-and-forth conversation. Making eye contact. Trusting someone.
Why Awareness Matters
Cerebral Palsy Awareness Month isn’t just about wearing green. It’s about: • Inclusion
• Accessibility • Understanding • Support for families • Funding for research • Recognizing caregivers, parents and teachers It’s about seeing children like Coen not as limitations — but as lives full of value. It’s about remembering that disability does not diminish worth.
From My Heart
Sixteen years ago, I became more than his Gigi. I became an advocate. A protector. A full-time daytime caregiver. Created a sock to help him become more independent. And if you know a family walking this road, check on them. Offer help. Learn about cerebral palsy. Make spaces accessible. Be kind. Include them. Because behind every child with CP is a family doing more than you see. This March, we wear green. But every day, we live this life in love.
