Behind the Ribbon: Melissa and Joey
Updated: May 11, 2020
Welcome to Sunshine and Shattered Dreams! I am so glad to have you.
My world for the last few years has been advocating. The only story I have been sharing though, is mine, which is not the only one out there.
This year, I have decided to use my platform to shine a light on the warriors who fight and the parents who advocate alongside them.
Meet Melissa and Joey!
Samantha: Introduce yourself please, tell us just a quick "who we are". Melissa: I am Melissa, 37 year old single mom to Joey - my 5 year old rock star. In my spare time, I work full time in retail management. We love music, sunshine on our faces, wind in our hair, and sea life.
Samantha: Can you explain your child’s diagnosis? What does it mean in laymen’s terms?
Melissa: Cerebral Palsy, or CP, is a group of disorders, caused by damage to the brain, this affects muscle tone and movement. Joey has spastic quadriplegia CP - meaning his muscles are stiff and tight (imagine if you flexed all of your muscles all day long), and it affects both arms and both legs. Because of this, he doesn’t sit unassisted, walk, talk, or feed himself - and he may not ever do these things.
Samantha: How did your journey begin? What was going through your mind at the time?
Melissa: Our journey began at 31 weeks pregnant. As a first time mom, that had an otherwise boring pregnancy, when I came out of anesthesia and realized that my son was born so early - I was scared to death but there was so much unknown. In a baby that early, they automatically run certain tests and scans. He had a whole slew of hurdles to overcome.
There’s no way to medically prove what causes CP. But with a history like Joey’s, it’s a pretty safe bet though. Because we know CP is the result of damage to the brain, most often occurring right before or during birth, it’s pretty safe to say that his is from the bilateral brain bleeds he suffered at birth.
Although bleeds are VERY common in preemies, Joey’s weren’t in the “normal” location in the brain...so his bleeds were most likely the result of the eclamptic seizure that I suffered as my medical team was prepping me for a very emergent c-section.
Samantha: What is your biggest fear for Joey? Melissa: My biggest fears for Joey will always be him not being accepted by others, and because he will likely always require such a high level of care, I fear something happening to me.
Samantha: What is your greatest hope for them? Melissa: Joey has been proving to the world that he’s writing his own story since he was 2 weeks old. He wasn’t “supposed” to live. Since the day that his cardiologist told me that I didn’t need to worry, my hope has been that he just simply continues to show people how much he is capable of. I have no doubt that he will continue proving people wrong and amazing people - specifically medical professionals!
Samantha: Tell me a little more about you child? What are their favorite things, dislikes, personality?
Melissa: Anyone that has met Joey knows that he is SASSY! He is the most expressive non-verbal kid you’ll ever meet. He is known for his personality, facial expressions, and extremely contagious laugh. Joey is such a happy kid, it’s hard to be unhappy around him. He doesn’t like being alone, and doesn’t like food being delayed - other than that, he’s a happy camper!
He loves food - he eats everything although he’ll usually pass on pears and hard boiled eggs. He knows the difference in Sonny’s, Mission, and 4 Rivers - and will pick 4 Rivers EVERY time. He loves Chinese, pot stickers became ‘sticky pots’ in our house, and he prefers my fried rice to take out. He loves berry season and is sad that his favorite, raspberries, don’t grow in Florida due to the heat. He’s been blueberry picking every year of his life and I blame his overall berry obsession with the fact that I discovered fresh blueberries when I was pregnant with him. (I distinctly remember making blueberry cobbler from scratch after getting home from work, at 11 pm, at 6 months pregnant!) Probably at least partially due to sucky vision, he is a TOTAL audio kid. He has
REALLY good hearing and loves a wide variety of music! I’m talking old school gospel to heavy metal and everything in between, although Carrie Underwood is his absolute favorite. He developed a true love for sea life after his first trip to Gulf Specimen Marine Lab in Panacea. As a result, he’s been a member there since his 2nd birthday, and we visit aquariums any time we travel! He loves animals in general but specifically puppies and he will bark and howl back with laughter! Squeaky toys are his JAM!
Samantha: How do you take care of yourself? The journey of special needs parenting can feel solitary, isolating, and lonely, even though you know there are many more out there fighting the same fight. Where or who do you turn to fill your cup?
Melissa: I have a ‘Joey box’ that I go through. It has my journal from his 44 days in the NICU. It has hospital bracelets from various hospital stays. It has the blanket that he was wrapped in when he was transferred from TMH to Wolfson. Basically, it’s a visual representation of just HOW FAR he’s come. And looking back through it, reminds me that God’s got our backs!
And a good long walk through the trails at Tom Brown Park never fail to help me clear my mind and get out of a funk!
Samantha: A life filled with hardness can teach us some amazing lessons on love, kindness, empathy, and joy. What are some lessons that you have learned through your journey that might be helpful to a mother who has just begun?
Melissa: It can ALWAYS be worse. If you don’t find something good EVERY.DAY. you won’t make it through. Focusing on something good that happened every day, no matter how “small” the victory, will help keep your spirits up. And learn to laugh about the screw ups. Because Lord knows they will happen!
While I won’t say that there’s no use crying over spilled milk (any mom that’s pumped and knocked it over will ABSOLUTELY cry over spilled milk!) - I WILL say that there’s laughing over being late for appointments, forgetting what day it is, arguing for 10 minutes with your kid over “you will BEND your legs!”....just like you will celebrate things that neurotypical parents would never even think about doing cartwheels over.
Samantha: What is a quote, scripture, prayer, or piece of mediation that you would like to leave us with today?
Melissa: When Joey was in the NICU at Wolfson, I was staying at an Extended Stay hotel, there in Jacksonville, with my mom. I got a God wink one day, when I found a coin on the floor, behind the chair that I sat in to pump in the middle of the night. I carried it in my pocket until after he came home from the hospital and to this day, it lives on the table beside my bed. “With GOD, all things are POSSIBLE.” Mark 10:27
Melissa, thank you for sharing your story and sweet Joey! I cried as I read through this, just because your strength and determination shine through so brightly. "Learn to laugh" is absolute gold. I've learned to do just that in life with Hank. I've learned not to take it all to heart, to let most of it bounce right off. His happiness is my concern, not others. Joey is a bright light, he is doing amazing things in his world!
If you'd like to keep up with Joey and his amazing Mom, follow them on Instagram at cpmama14