“’You are so beautiful to me’ by Joe Cocker played on the radio the day my mom and dad drove me home from the hospital. My dad always says he’s never driven slower, and mom couldn’t stop staring at my tiny body in the carseat. Mom always reminds me of this memory and often signs my birthday, and Christmas cards with little heartfelt lyrics from that song. It makes me feel good knowing I was wanted, and loved immediately. So many babies don’t come into this world with that luxury. I was healthy, strong, and loved. For that, I’ll always be forever grateful.
‘You are so beautiful
Can’t you see?
You’re everything I hope for
You’re everything I need,
I love you always, for 1000 years, mom.’
I remember being back at that same hospital 18 months later. I had no idea what was happening, but I knew my mom was behind a cold closed door I wasn’t allowed to go through, and that was enough to make my little mind panic, and my blue eyes well up with uncontrollable tears. Dad was back there too, somewhere in my little, rapidly beating heart I knew something very complex was occurring, and my life was changing forever. I was inseparable with mom, and I couldn’t understand why I was being kept away from her. I knew she’d want to see me, too. I had just learned to talk and we chatted all day at home. My mind was filled with endless questions and she was always so patient to answer each one. We spent most days together. She stayed home with me and was always there to hold my hand. But not that day… I wish I could’ve held her hand – she needed it then.
My sister Callie had just arrived behind those doors and the doctors rushed her out of the room quickly after she was born. She was born with her umbilical chord wrapped tightly around her neck, her face blue from lack of oxygen. She came into the world feet first – she always does go about things her own way, birth was no exception. Perhaps the doctors should’ve done an emergency C-section. Who’s to say? It was the 80s, people didn’t sue as much back then, and my mom believed the doctor tried his best.
We found out after testing was done, that Callie had a condition called Cerebral Palsy. The cause of this is a brain injury that occurs while the brain is developing — before, during, or after birth. As a result of the brain damage during brain development muscle control, muscle coordination, muscle tone, reflex, posture and balance can be affected. During Callie’s birth her brain was permanently damaged. ‘She likely will never walk or talk, she will need a wheelchair,’ they said. The doctors had quite a lot of opinions. Mom and dad didn’t believe them. She didn’t look very different at birth from the other babies.
None of us really knew what her condition meant for our family at the time.
We saw every specialist there ever was. My childhood ended up being the third wheel to speech therapists, physical therapists, behavioral therapists, and occupational therapists. Callie was pretty difficult. Turns out she did learn to talk and didn’t stop often. Just all day she talked. She also was really angry at times. Mom felt guilty. I felt guilty she felt that way, and tried my hardest not to cause her any additional sadness.
My parents divorced when I was 8. My grandfather, Homer, died around that same time from a massive heart attack. He was working outside and had just come inside for lunch with my grandmother, Betty. It was a really hot day outside in the Florida sun. Grandma was making him a sandwich in the kitchen and when she came out, he was gone, laying in his favorite brown Lazy Boy, he looked like he was napping, and she tried to wake him up. She called my dad, then 911 after a few minutes of confusion. He was rushed to the hospital in an ambulance. They tried to bring him back to life but it was too late.
He stayed on a ventilator keeping him alive for a few days after. The doctors said he lost oxygen for too long to his brain. ‘Once we take him off the ventilator, he’ll be gone, it’s time to say goodbye.’ I never did say goodbye to him, I didn’t want to see him like that. I always wanted to remember him strong. He always called me, ‘pretty girl’ and always made time for us – fishing, building tree houses, letting me help him work on his cars. I didn’t feel pretty at the time. I was depressed and was eating my emotions around that time and had crowded teeth. I was insecure, and loved him very much. I remember hugging him to this day, the way he smelled like Listerine, and that he was always smiling and humming. He loved singing, usually in the showers, church hymns. ‘Because he lived’ was one of his favorite songs. Every time I hear it, I still lose it crying. So does my dad. I’m happy he lived and that I got to love him.
I found childhood and school difficult. I always felt different, I felt nervous, sad, and anxious. I didn’t want to complain about the realities of living with a sister with special needs. It’s an uncomfortable subject that is hard to understand for others. Kids stared at my family often at restaurants, in stores, just everywhere. Callie was in a wheelchair, and didn’t speak like everyone else. It made me angry and I always wished they’d just ask us about her instead of looking at her with disgust. I didn’t have many friends; I think I was scared they’d judge my sister and family for being different. What I did have were really great cousins who came over a lot. My cousin David is like my brother to this day and I’m so grateful for the moments of happiness he added to my childhood.
I’m 34-years-old now. I don’t have any children. Maybe a piece of me is still scared, and selfishly a little happy to be living my life just for myself. My sister Callie is living in a group home and is very well. She has lots of friends, which is great because she’s always been a bit of a dictator. Her friends paint her nails and dote on her all week, and my parents visit every weekend.
After college I worked with children with special needs for 6 years as a pediatric dental hygienist. I always wanted to hug each family, specifically the siblings of the special need’s patients. I know the life they’re living, and it can be very lonely and hard to be different. I have a heart full of words, love and have so much more to say. I have always wanted to tell my story to those families, give each one a verbal hug, and let them know life changes; it’s a long winding ride and can be filled with so much light.
I left my job as a dental hygienist 4 few years ago. I needed to get away, live for myself. I live and work on a boat now in Miami Beach. I’ve gotten to travel the world, to leave my home state of Florida and state of mind. I found myself somewhere out there on the ocean, under the stars. I’m really proud of myself for leaving the little bubble I grew up in. It was a scary thing leaving my comfort zone – but it changed me. I learned to meditate and calm my mind. I learned what I loved — photography and ocean conservation. Life is such an unpredictable journey, filled with tidal waves of lows and highs. I also fell in love with a great man somewhere around the moment I learned to love myself for the fist time.”