Cerebral Palsy: A Hero's Story
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Most people have heard of cerebral palsy (CP), but many people do not fully understand what it is. Cerebral palsy affects roughly one in every 323 children according to the Centers for Disease Control and Prevention (CDC). Many people lead successful lives with a CP diagnosis, and those of us that were blessed with a child with CP can attest to how incredible it is to have someone with CP in their lives.
Cerebral palsy is defined by Mayo Clinic as “a group of disorders that affect movement or muscle tone and posture.” As with many other disabilities, CP can vary greatly in severity. There are many misconceptions about cerebral palsy. It is not always the result of an injury to the brain at birth. While this is one possible cause it is certainly not the only one, and there is not always someone to blame. Although maternal substance abuse or medical malpractice can be predisposing factors, it is usually nobody’s fault. Possibly the most common misconception is that a child diagnosed with cerebral palsy cannot lead a full life. There are thousands of people all around the world that live independently and happily despite their CP.
Cerebral palsy can be the result of many things. I will cover some of the more common causes. Prenatal (before birth) causes include maternal substance abuse or infection, gene mutation, fetal stroke, and very rarely, decreased oxygen to a fetus during a difficult labor and delivery. Postnatal (after birth) causes include prematurity and/or low birth weight, stroke in a newborn, traumatic injury such as a fall, or newborn infections such as meningitis.
The chart above is from Frontiers in Pediatrics, and the article is amazing. If you're looking for a more in-depth article, I highly suggest reading this one. The abbreviations above are:
IUGR: intrauterine growth restriction (when fetal growth is restricted in utero)
IVH: intraventricular hemorrhage (bleeding in the brain; stroke)
PVL: periventricular leukomalacia (death of areas of brain tissue around the ventricles)
Some patients will have a single cause, but often there will be a combination of factors at play. My daughter, for example, had sepsis secondary to a necrotizing enterocolitis infection, meningitis, IVH, and PVL. Her case was extreme.
Cerebral Palsy causes a multitude of symptoms that vary in severity. Not every patient will experience all symptoms, and all patients will be affected differently. Some common signs and symptoms include:
Muscle tone variations such as stiffness or floppiness- can be worse on one side or equal on both sides.
Balance and coordination issues.
Delays in reaching milestones such as pushing up, sitting up, crawling, walking, etc.
Difficulty with eating or swallowing.
Delays in speech or being nonverbal.
Seizures.
Many more, and they can be read in detail at the Mayo Clinic link above.
A hero's story:
Jennifer Vegas is the proud mother of a son with cerebral palsy. Jennifer is also a hero. Her son's name is Joshua, and she cannot imagine him any other way. I had the pleasure of interviewing this incredible woman, and I cannot say enough good things about her. You can get her book, "CP Warrior" in paperback * from Amazon (or get it here * for Kindle). It is a moving story of her life raising Joshua.
I want to thank Jennifer for taking the time to talk with me and allowing me to share her story. As a mother of a child with CP, I know how overwhelming it is to get that diagnosis. I also know how quickly you realize that your child is a fighter and that you will help them through everything. I am honored to share a little of Jennifer's story with you, and I implore you to purchase her book. It's a heartfelt story of love and bravery that will move you to tears.
1. What were your first thoughts when doctors told you Joshua had CP?
“My first thoughts were, I was shocked. Not so much, shocked, because I was expecting something like that. But why? Why is this happening to us, this poor baby? God, why us? That didn’t last long, then I thought, wait a minute, we can do this, we can beat this, God has given us challenges and we beat those. At 24 weeks, he was viable, so we can beat this challenge. It will be a long road, but we can do this. We can be strong, and we can come together as a family and do this. We knew how strong he was, and it was our turn to be strong for him.”
2. What are some of the biggest challenges of raising a child with CP?
“The biggest challenges daily come when Joshua can’t express himself. His attempts at expression can bring anger, but he is a great kid. He’s happy, he runs around with so much energy, but his major challenge is not being able to be verbal. Also, in some states, there are not many programs for CP or special needs. We as parents have to fight for these programs, even going to Congress. We must be advocates for our children that can’t speak for themselves. There are not many parents who know how to do that, so we have to work together to help everyone learn to do that.”
3. I’m sure there are good days and bad. What are some things you do to help Joshua through the bad days?
“His bad days we usually go for a walk. There is a mall across the street from our house where everybody knows Joshua. We would go there when he was homeschooled, so everyone knows him there and talks to him and that lightens his day. Normal walks, getting to know people around the neighborhood. He enjoys doing those things and they calm him down. As long as he can go out for fresh air and is not stuck in the house, that brightens his day. Old Towne, a little amusement park near us has rides and events like car shows and he enjoys going there, too.”
4. It’s important for a caregiver to make time to take care of themselves. How do you take time each day just for yourself?
“I go for my daily walks. I take time for myself with God. On my walks, I talk with God. I listen to music. I go window shopping, with no money. I go empty-handed to just look at things I wish I had. I used to do that with my Grandmother. You don’t need money to take time for yourself. Exercise or take a walk in the park or go for a drive. Before I moved from Chicago, I drove down Lakeshore Drive at night after everyone went to bed. Looking at the beautiful scenery was so peaceful. I still drive around sometimes where I live now. By taking care of you, you can care for your family. You also must keep up with your yearly doctors’ exams.”
5. Joshua has repeatedly defied the doctors by achieving things they never thought he could. Can you describe that kind of “proud mom” moment?
“I can describe it like this: All those times doctors told us he’d never survive, walk, or talk - I let it go over my head. When he did all those things, I cried. I cried with joy and because doctors were wrong. I knew from my faith and trust in God that Joshua would be okay. I held onto that. When Joshua won first place ribbons at the Special Olympics at his school, that was my huge proud mom moment. All that negativity from the doctors was in front of me when he was running.”
6. Is there one particular management method that is critical to helping your lives flow smoothly (i.e. following a strict schedule or going with the flow day-to-day)?
“Going with a schedule helps Joshua more. If we deviate from his routine, he may have a meltdown. Transition is hard for him.”
7. How do the challenges your family faces change as Joshua grows up?
“Joshua’s needs change as he grows and his attitude changes. At school he’s wonderful. At home, he is more independent, but he has the attitude of any teenage boy," she tells me with a laugh. "The lack of programs available for special needs people is the biggest challenge as they get older. They still need support, but programs don’t always exist.”
8. What motivated you to write your book and share your story?
“I have two motivations. First, knowing what we went through with Joshua, and what we have done to help other families that are going through or starting their journey, I wanted to give them hope and encouragement. Second is my grandmother who passed away ten years ago. She loved books, and she told me I needed to write a book. So, a few years ago I just started writing, and I decided it had to be about Joshua. I realized I really needed to do this.”
9. What is the biggest piece of advice you would want to give a parent who has just received a CP diagnosis for their child?
“The biggest piece of advice is to get all the help you can get. Do all the research you can on CP. Take care of yourself through all of it, and do not lose hope.”
10. What closing words do you have for us on what life is like with your son?
“My life with Joshua is... a wonderful life. He makes me happy every day and gives me strength every day. He teaches me how to be me and that there is nothing in this world that can break me down. I can’t be overwhelmed, and he shows me every day to wake up with a smile. He wakes up like a Jack-in-the-Box. He pops up and says, “Go bye-bye." He wakes up full of energy and so I have to get up with joy. Every day you thank God for being here and hope that every single day turns out that same way. As long as I feel like that, he will make it like that. Let go and let God!”
A cerebral palsy diagnosis is certainly a life-changing event. But Jennifer and Joshua prove that you and your child can live wonderful, fulfilling lives with CP. Arm yourself with everything you can, research, and learn, and you can help your child thrive and be a CP Warrior like Joshua!
I'd love to hear how someone you know with cerebral palsy has touched your life. Please share your story with me in the comments.