Category Archives: Stories

Reflecting on 2014, Looking Forward with Hope

Crystal McClure talks about a New Year with Cerebral Palsy

By Crystal McClure

As we enter into the new year, I would like to take a look back on 2014. For me, the last two years have brought a lot of personal growth. There was one major positive change in 2014, during the spring of last year, when my sister and her daughter moved in with me. It was a big adjustment for all of us, but quite possibly one of the best things that could have happened. Also, I made new friends last year as well. They treat me just as they would anyone else and have affirmed just as many others have for me, that being around positive people brings out positivity in you!

What am I most thankful for this year, as with every year, is family and friends. They keep me going and are the biggest reason (aside from my Faith) as to why I always have such a positive outlook on life. Even when things were not great last year, I always reminded myself that everything would be ok no matter the outcome. There is always something positive in everything that we endure in life. We just have to look for it. It is when we choose to only see the negative side of things that we receive a negative outcome.

Meeting A New Challenge

One of the biggest changes for everyone was my sister and her daughter moving in. After much discussion we decided this decision would be the best for both of us. I would have someone around and also have other help I needed, and she would have the help she needed in having someone to care for her daughter while she worked. What I have learned through this change most of all is not just how different we are as people, but how well we come together and make it all work out for the good. I learned that we deal with situations differently and that is okay. I learned that I am able to keep calm in very high stress situations. I attribute that to having to deal with the many challenges that my cerebral palsy throws my way every day.

Continuing Positivity

In 2015, I want to continue to be positive. I also want to bring about more awareness through my writing for CPFN as well as on my personal blog. I also plan to be more aware of when I am worrying about mindless things. Those who know me personally know I do this often. We all know what happens when we worry. We are just wasting energy and time knowing nine times out of ten what we are worrying about is not even going to happen. We just get all worked up for nothing. I want to learn to focus that worry elsewhere, looking for something good, and knowing that I will be taken care of.

I want to wish everyone at CPFN a wonderful 2015 full of happiness and blessings! I hope to get to know more people/families involved with CPFN. I hope that we can all help one another be positive in everything in the year to come. I cannot wait to see what lies ahead! I would also like to include a link to one of my posts on my personal blog about positivity. Enjoy! Staying Positive in the Midst of A Storm

Looking Back: Graduating High School with CP

Cerebral Palsy Graduation

Beautiful dresses and tuxedos have been donned by teens all across the nation for the Spring 2014 Prom season. Caps have been tossed into the air as a way of celebrating the biggest milestone of a teen’s life: graduating. Congratulations Class of 2014!

Twelve years ago, I was one of those teens. As mentioned in a previous blog for Cerebral Palsy Family Network, I was the first in my family on my father’s side to graduate from high school. I am also the only person in my family with a physical disability. Getting to this point in my life was not without struggles, but I fought strong all the way.

Prom was a unique situation all its own. I was not able to attend my Junior prom because it was held in a location that is not accessible for someone who uses a wheelchair. As you can imagine I was very upset by this as were my parents and some of the faculty at school. They all made sure the Senior prom was held in a location that was accessible for me. For that I will always be grateful. However, finding a date to the prom proved to be a challenge. I asked a few people whom I had interest in and they essentially said no. As time for the prom grew near I still didn’t have a date. Then a good friend of mine asked someone she knew if he would take me to prom. He said yes. I spent the day getting ready and of course we took several pictures with our families before heading out for the evening.

We had dinner where the prom was being held and then proceeded to go dance and socialize with some of my friends. When it was time for pictures to be taken I remember the photographer being a bit hesitant as I didn’t want my wheelchair in the pictures. Chris (my prom date) came to the rescue! He suggested that we do a floor pose. The pictures turned out perfect! Afterwards, we decided to leave because it was very crowded and loud. We ended the evening with a horse drawn carriage ride around downtown Chattanooga before heading home. It was a wonderful night!

Graduation was a very exciting time for me. I made it and could go on to college! The ceremony was held in an accessible location. There was a lift used to get those of us in wheelchairs up on the stage to roll across and receive our diplomas. Instead of going back down to our seats, we stayed on the stage. If I could go back I would have opted to go back down to my seat, since it was uncomfortable for those of us in wheelchairs. I also would have tried to get accessibility for Junior prom so I could have attended just like everyone else. As they say though, hindsight is 20/20.

Overall, it was an exciting and rewarding time. For those of you who just graduated, the best thing I can say is to enjoy this time and to be proud of the milestones you accomplish. The best is yet to come!

 

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Hope & Humor

Hope and HumorWhen children require hospitalization there are a few things you should know:

Upon arrival, if given the opportunity, use valet. Hospitals require so many handicapped parking spots that even with a handicapped sticker, if you don’t arrive before the crack of dawn, you’ll wind up trudging half a mile, in the sleet (in April, uphill, both ways), while pushing a luggage covered, anxious child filled wheelchair anyway.

At pre-op registration, after answering the usual questions, they will hand you an electronic pager to let you know when it’s finally your turn to be prepped. You know, the clunky, obnoxious, red light blinky blink black box that they give you when there’s a ridiculously long wait at your friendly neighborhood pub and grub. Ironic since your starving little patient hasn’t been allowed to eat since midnight and probably won’t eat again until the next day! I’d go ahead and hold the pager yourself.

Pre-op triage is a breeze.  The staff repeats everything you hopefully already knew or manically Googled (every day for weeks prior) and then they quickly whisk your baby off to the land behind the curtain, the place of magical mystery where everything you feared, hoped and discussed just might come to fruition!

While waiting for the surgeon to turn water into wine you are wrangled into an overcrowded family waiting room and forced to watch endless reruns of Full House while trying to avoid the curious silent stares of the other hopefuls whose loved ones, it always seems, will be done and moved to private rooms long before yours. And even though you haven’t eaten in 24 hours yourself, the moment you leave that room to snag a satiating egg salad sandwich or steal a quick trip to the potty, the surgical nurse will inevitably call for you and you’ll appear to be out somewhere, presumably working on your second beer…

Late in the day, when surgery is over, our little guys are corralled into a recovery room full of other confused and groggy patients, young and old, also coming out of anesthesia. Oh how it has often reminded me of the sounds coming from an amusement park haunted house (or an X-rated movie) depending upon the day and the painkillers involved.

When the staff is finally convinced that your child knows where they are, and whom they are, (tall order for such tiny ones!) it’s off to your private quarters for some much needed rest and relaxation. If, of course, being woken every 15 minutes for a vitals check, shift change, monitor alert, saline bag change, food service person, cleaning crew recon, Chaplain visit, hospital schoolteacher monitoring, anesthesiologist consult or just a simple ‘You need anything?’ nurse pop in is relaxing to you.

If you do get a miraculous moment of respite, when the pain meds kick in and your child’s eyes finally close, you’re sure to be serenaded by the soothing sounds of newborns crying, monitors beeping, alerts alerting, staplers stapling, staffers chatting, carts-a-rolling and the rap tap tapping of a neighboring patient getting a little exercise… (that was a new one last night). And not to be outdone there was that mysterious noise looming up above that sounded like Bender from the Breakfast Club about to burst through the heating ducts ready to reveal the punch line to his infamously unfinished joke.

With your little one finally resting peacefully it’s Mom and Dad’s turn to fight the good fight for the postage stamp blanket or commandeer the crunchy pillow to cuddle up on the ‘couch’cot while fumbling around the Willy Wonka ’like’ tubes and wires searching frantically for an electrical outlet for a nearly dead laptop in a desperate attempt to get a little work done before my baby boy realizes that I’ve let go of his hand…

This is life, love, hope and humor. These are the moments when we laugh, cry, breathe and sigh all at the same time. These are the times we would never want to live over but couldn’t live without. No matter what the circumstances, with these caregivers and in these hospitals our children are given an opportunity to improve their quality of life and I am forever grateful for every awkward, uncomfortable, terrifying and hilarious moment we’ve been through.

Thank you to my loved ones and the ever-present hospital staff for keeping me sane by also keeping their sense of humor in the face of, well me, and such overwhelming uncertainty.

 

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