During the month of March, we celebrate National Cerebral Palsy Awareness Month to recognize and support the many individuals who live with Cerebral Palsy (CP). CP is a permanent physical disability impacting a person’s mobility and muscle strength. The degree of its impact ranges greatly on an individual basis, from mild to severe. Early intervention, therapies, use of Botox and even surgeries can help a person’s ability to deal with pain management and functionality in daily life. CanChild states that approximately 1 out of every 400 individuals in Canada are diagnosed with CP, and it is the most common physical disability in children.
In celebration of Cerebral Palsy Awareness Month, family members of clients shared their experiences of living with a loved one with CP through the creative expressions of poems and quotes.
A poem written by Grandview Kids sibling, Cyria-Amin
It’s not a disease but a disability.
It’s not always fun, but it is accepted by some.
They think she’s contagious
Staring strangely sadly, thinking poor child.
They don’t know the struggles, the fun, the learning.
Sometimes I do wish she could do what we can.
But I know she’s with us for a reason.
The reason for this is clear to us, though unknown to others.
It’s as profound as love and unwavering care.
She can’t get around herself, leaning on others for assistance.
Sometimes she can express her feelings; other times it’s a guessing game.
Walking, talking, running all the things she can’t do,
Walking, talking, running all the things I can do.
Her comprehension surpasses that of most, and it stands as her greatest strength.
No matter how hard I try, my understanding will never quite measure up to hers.
Pity they give, not what she needs.
Understanding they don’t give, that’s what she needs.
Each day spent with her is nothing short of extraordinary.
For her, every day is an exhilarating adventure,
Brimming with endless possibilities.
A brother, a sister, a mother, a father,
All who care and all who understand.
Aunts, Uncles, Cousins all by her side
Even through the toughest of times.
Invitations come and go, yet only a few can truly be accepted.
We are always left finding a way to ensure she is included, for she is never left behind.
Inclusion seems as if is a difficult thing
Yet it’s a mere adjustment none want to commit to.
But for her
It’s her right for quality of life
Yet no one seems to understand the battles fought every day to be accepted.
Any meal of the day, breakfast, lunch, dinner when she can’t eat,
We say we can’t eat either, so she’s not left out.
Sometimes there are ups and downs, frights and delights.
Could be a milestone or an emergency; no one knows.
When plagued by illness or enduring discomfort,
Every moment feels like an unbearable struggle.
Restless. Risky. Painful. Spasms
This is how these nights sometimes feel.
You can not understand the financial struggles.
The ones which come when meeting every factor contributing to a better quality of life.
Sure, equipment ain’t cheap
But the love, the smiles, and pain-free days she receives is worth every penny invested.
The government fails to grasp the complexities of cerebral palsy.
Funding is given, but it’s far from being diverse and inclusive
Even though they believe it to be.
This Is Life Living with Quadriplegic Cerebral Palsy Is.
– Cyria-Amin H.
My Brain
My brain, my brain, so much pain. It can feel me when I am mad, sad, happy, exited and joyful. When I am tired my brain will tell me with a yawn. When I am hungry my brain will tell me by my tummy growling. When I am sick my brain will tell me by making me hot. My brain, my brain. We learn through education and talk with communication.
We all know that brains work similar but in this case my sister’s brain works differently. When she was born her brain and body did not get enough oxygen. Now she has cerebral palsy also known as CP.
– Cyria-Amin H.
A message from Grandview Kids parent, Abby
“Wesley was born a micro-preemie and spent his first six months of life in-hospital after experiencing a brain bleed that caused extensive brain damage. We were told to expect that he would never be able to talk, feed orally or walk. He was diagnosed with level 3/4 Spastic Diplegia Cerebral Palsy (CP) near his second birthday. He missed many milestones as an infant, but we learned that with hard work and the right support system, he would reach many of his goals on his own time.
Having a CP diagnosis meant many hours spent in physiotherapy and occupational therapy sessions, both privately and through Children’s Treatment Centres, and then continuing the exercises at home throughout the week. We relocated and started our Grandview Kids journey in 2019 where we met some fantastic therapists who supported our goals. He was able to gain enough strength to qualify for Selective Dorsal Rhizotomy (SDR) surgery at SickKids Hospital in 2021, followed by extensive rehab at both Holland Bloorview Kids Rehabilitation Hospital and Grandview Kids.
Today, Wesley’s CP level is considered a 2/3, and he can use a variety of walking aids, including a wheelchair, walker, and sometimes even canes. He gets Botox shots every few months at Grandview Kids to alleviate extra muscle tightness and continues to face challenges with determination and grit. He is in a portable classroom this year and has become great at advocating for his needs to be as independent as possible. We know that there will always be barriers to accessibility, but Wes continues to learn that he must use his voice to pave the path for himself and others.” – Abby
A message from Grandview Kids parent, Kathy
“Our son, Ethan, started with Grandview when he was 10 months old. He was born prematurely and had missed every milestone. At his first birthday, he couldn’t sit unsupported. Ethan was never expected to be able to walk. However, at six years old, after years of physiotherapy and a whole lot of personal grit, he’s not only walking but also running and jumping.
Even now, Ethan continues to surpass our expectations. This past November, he participated in his first inclusive athletic event, the Durham Regional Police Children’s Games. Not only did he love it, but he also won Male Athlete of the Year. We are looking forward to this spring, when Ethan will try adaptive soccer and baseball.
Ethan’s journey is a testament to the power of perseverance, dedication, and the unwavering support of those who believe in him. As he takes on new adventures in sports and beyond, we know he will continue to defy expectations and inspire everyone around him. For Ethan, the possibilities are endless.” – Kath
Check out more Grandview Kids articles
- March 18: National Trisomy 18 Awareness Day – Jamilah’s Journey
- March 1: International Wheelchair Day – Justine’s Story
- Celebrating Cerebral Palsy Awareness Month!
- Kiara’s Story: National Epilepsy Awareness Month
- March: Dates of Significance
