Story by Nick Tate

Recreation shot of hospital room that Nick Tate would have once been in as a child going through his years in and out of the hospital.

 

Nick Tate at his home in Long Beach.

Mickey Mouse made his rounds from bed to bed as sick kids lie weak.  Many were unable to move throughout the hospital ward. At the fragile age of 2, when I should be playing with toys, I was hooked up to an IV and other foreign contraptions.

It’s a helpless feeling.

While the average person may find this sad and even disturbing, It was a life I had come to know quite well: In and out of the hospital on what felt like a daily basis without ever wondering why.

My “Disneyland” was the hospital room.

The doctor told my mother that it’s highly likely I wouldn’t cry when I was born.

Those words gave her a sense of uncertainty before labor.

A muffled squeaking noise was all that could be heard when I was born. At three months premature, two pounds, four ounces, I was considered to be a fighter by many of my doctors.

According to estimates from the Center for Disease Control’s Autism and Developmental Disabilities Monitoring Network, roughly one in 323 children has been identified as having Cerebral Palsy.

I am the one in the group of 323.

Growing up, I constantly found myself in a new uphill battle. For instance, things other kids took for granted, like tying their shoes, is something I couldn’t (and still can’t) do.  Because of my issues, I’ve always worn slip-on shoes (I like Vans the best).

While I try to be as self-sufficient as possible, I’m still relying on others more than I’d like.  Even though I’m fully aware that it’s not my fault, it’s a weird inner battle at times. I recall having an operation in fourth grade on my left arm and foot. I was pretty much immobile for a few weeks, so my classmates would kindly escort me to the bathroom so I wouldn’t fall down and injure myself further. It’s these kinds of selfless acts of kindness kids with CP really need and depend on.

Out of this full deck of adversity came an appreciation and admiration for the simplest things in life. It’s something you don’t realize until the odds are completely stacked against you.

“I remember your parents always at the bedside and totally involved in caring for you, as well as learning all there was to know about helping you thrive in the NICU,” said Ellen Drake, a registered nurse who worked at Miller Children’s Hospital in Long Beach when I was born.

“I don’t remember a time I thought you wouldn’t make it home.”

Taking a moment to remember what life was for Nick Tate as a child living in and out of hospital beds at Long Beach Memorial on April 4, 2017

My parents’ strength was something I felt the most and it was a huge support as I battled every obstacle. Whether it was the fourth grade shunt revision (an operation that keeps my brain from collecting fluid and swelling up), or the sleepless nights they spent next to me at home or in the hospital, their faith in me made me strong.

There are a multitude of challenges that children and adults with CP face.  Dr. Penny Abad Santos, physician at Orange Coast Memorial Medical Center said, “There is an association of a lower IQ in babies who are born prematurely; more so if they are born with a birth weight less than 750 grams (1.6 pounds). When compared to full term babies, the mean IQ score is statistically lower than the pre-term group, the lowest in those born before 25-26 weeks.”

I was born at 1031 grams, which is exactly 2.3 pounds.

Facing something like Cerebral Palsy, you need people to have your back at all times. You count on your friends and family to pick you up when you feel low.

From one day to the next, you can’t predict what children with CP will face.

There also needs to be an instinct to notice when something goes wrong. One time I awoke out of a dead sleep at 2:30 a.m. after a long night at Disneyland. My first instinct was to let out an agonizing scream, to when I lay motionless on my Great Aunt’s couch. It ended up being caused by shunt complications. Every person must be on his or her toes when dealing with a loved one with CP.

Carol Tate holding up old images of Nick Tate as a newborn in her home in Long Beach Ca on March 3, 2017.

I’m now a college sophomore here at LBCC, 5’8, 158 pounds, on my way to completing my long-awaited transfer to Cal State Long Beach as a journalism major. Why is my weight significant, you ask? Well, picture your hand, how big it is and open it up. I once was the size of your palm.

I visit my old children’s hospital once a year on my birthday. During one of those visits, my mom and I met a mother and father whose daughter, Sage Amara, was also born premature with a myriad of problems including cerebral palsy.

At the age of three, she was given a shunt and had other life-saving surgeries performed.  She routinely attends occupational and physical therapy through California Children’s Services, a state program that helps children with health problems and their families.

“Sage’s biggest challenge at age three is being mobile to interact with her peers. She doesn’t understand her limitations,” said Stacey Boydell, Sage’s mother.

Most kids that I’ve met with my condition think that they too can do everything a normal term child can do. Speaking from experience, that’s sadly not the case.

But as I was growing up, particularly in elementary school, the majority of the children looked at me as though I was just like everyone else. And yes, I received the occasional stare and people asked me about my story (they still do), but that’s where I have to stay true to who I am.

I believe I was put on this earth for a purpose, and looking back on all that life has thrown at me now and continues to throw at me, I can’t just sit back and feel sorry for myself.

Because actually, I never have.

I don’t drive yet and I don’t know when that will happen but it doesn’t stop me from doing the little I can do every day to eventually catch up to everyone else. However, I am driving one thing and that is myself.

I continue on an unpredictable journey without an end in sight – but it will probably be just as rewarding and scenic as my first two decades on this earth.

Sportscenter anchor Stuart Scott once said in his ESPY Award speech during his courageous fight with cancer “Live. Live and fight like hell.”  I’ll never be able to live out the dream I once thought was attainable – Playing in the NFL – because of my shunt.  However, children with Cerebral Palsy like myself can do one thing without limitation throughout their lives.

Live.