Meet my baby sis, Brandi. I know she looks like she’s 15, (she hates it when I say that), but she is actually 24. Brandi has Cerebral Palsy. If you’ve never heard of CP before, or have heard of it but don’t know what it is, it’s a condition that occurs when there has been some sort of injury or malformation of the brain, before, during, or after birth. In turn, it impacts the development and movement of the muscles in various ways. It also effects cognition, which is the ability to gain and process information. Some say that it’s difficult to determine the cause of cerebral palsy, while others claim that it’s due to a lack of oxygen to the brain. In Brandi’s case, it was most likely the latter.
On the day that Brandi was supposed to grace this world for the very first time, her mom stopped breathing while she was in labor, (we have different moms but we don’t do that half-sister mess around here). Fortunately, the doctors managed to save her mother’s life, but the effects that it had on this little baby bundle had already been set in motion. From that point on, literally, from the womb to the room, Brandi was sure to face impending challenges.
Brandi’s challenges living with Cerebral Palsy, as she began to develop, were very apparent. She wasn’t moving at the rate that other babies/toddlers would move at, nor were the muscles in her legs and back functioning normally either. Brandi didn’t walk until the age of five years old, but up until that point, she had multiple surgeries, one of which was to help straighten out her vertebrae. She went from wearing a body cast, to casts on both legs, which confined her to a wheelchair for some time, to leg braces and therapy, to a walker. There were so many attempts to improve her state, but the reality of her walking on her own was still uncertain. However, if you know anything about a grandmother’s love, then you know that they are like miracle workers sometimes, (at least that’s how we view them).
So, in addition to Brandi’s therapy, grandma Jean worked with her consistently until she was able to actually walk. That walker was simply a tool to help her balance as she struggled to put one foot in front of the other. Her legs were very thin and one was not completely proportioned or as erect as the other, which caused her to tilt a bit to one side, but she never stopped moving.
She knew that she was different early on, so dealing with name-calling, physical limitations, learning challenges, and bullying didn’t make it any better, nor help her confidence level much either. Brandi had some nice friends between elementary and middle school, but there were just as many, if not more, mean kids that would make fun of her by calling her names or teasing her about the way she looked. There was even one little jerk middle school boy that she told me about later in life, that pushed her down a hill one day as she was walking to get on the bus. What a bully! Some kids can be so cruel. I wish I had been around back then when that happened, I would have kicked his butt and sent him flying down that same hill, after I made sure she was okay. (But we didn’t live together, so I didn’t hear this story until we were grown). Needless to say, those were hurtful days for her, but she also had learning difficulties. It took her a much longer time than other students to grasp, retain, and understand information presented to her. Math was confusing, comprehension in reading was difficult, and because the muscles in her hands were very stiff, her hands and fingers were not aligned normally, they curved to the side a bit, therefore, writing was also challenging. And it wasn’t just limited to writing, imagine not being able to do some of the simple things that most of us take for granted like buttoning your own shirt, tying shoelaces, or gripping items easily without dropping them. It was a process, but like many other students with deficits that significantly inhibit learning on any level, Brandi received special education services and instruction to help her in those areas. But as her shirt says in the first pic in this post, Cerebral Palsy is Not for the weak. Meaning, you will go through so many physical, emotional, and mental challenges as a result of it, that it takes support, strength and endurance to get through those times so you don’t just completely give up. But as the shirt also says, my sis is a “Warrior” so let’s talk about the triumphs.
Brandi is a Cerebral Palsy Warrior! After those crazy days in elementary and middle school, next came an even more challenging beast, high school. Do you remember what high school was like back when you were a freshman, sophomore, junior or senior? (I have some stories, but that’s another post for another day.) Even if it was too long ago to recall, think about what high school students are like and up against today, then imagine what it must be like for someone with preexisting issues. Students without deficits often struggle with self-esteem, bullying, peer pressure, self-identity, and other adolescent growing pains, so I’m sure this had to be a very scary new situation for Brandi with all that she was dealing with inside and out. After talking to her about it, she relayed that she didn’t have all the bullying issues that she did in middle school, rather, her main issue at that point was learning the information. While her peers were on their specific grade level for learning, Brandi was still on a 6th or 7th grade level in high school. She said her biggest struggle was grades, and keeping up with work. I asked her how she overcame these challenges, and she said, “They wanted to give me a certificate for graduation, but I didn’t want a certificate, I wanted a diploma. So I had to just buckle down and try to focus more. I got help from my teachers, friends, tutors, and family, and just did it.” And she did just that! Brandi graduated from high school on May 23, 2014 with her high school diploma.
Not only did she graduate from high school, but Brandi was interested in becoming a health care worker, so while in high school, she was enrolled in a program called Project Search. For those who have never heard of Project Search before, it’s a program that partners with schools’ special education department to help students with disabilities transition into the work force. This allows students to gain skills for work so they are employable. It also builds confidence and encourages skills for self-sufficiency. Students are set up with entry-level positions for a span of a year, and if successful, they have a graduation ceremony at the business site, where they are honored for their hard word and dedication, they are presented with a certificate of completion and a medal, and are able to either apply for a job at the site where they interned, or for other available positions elsewhere. Brandi worked at a hospital in the human resources department. Her duties were filing papers, basic data entry and answering phones. She was trained for a period of two weeks, before she engaged fully and independently in her position on her own. Brandi proudly completed the program a year later in May of 2015. She was excited to graduate and applied to the hospital for employment, unfortunately, she was not hired. However, she continued to apply for work elsewhere. She finally found and took a position at a movie theater, and has been there for almost five years. She was even recognized with an award for being the employee with the best customer service, in addition to customer compliments . She is currently considering going back to school for some type of trade, possibly in office administration, but is seeking out ways to become a motivational speaker and advocate for those with Cerebral Palsy. Brandi has a friend with CP who also graduated from the program, who is currently working as a special education English teacher, which goes to show that limitations can be surpassed and so can stereotypes.
There are different types of cerebral palsy, so the effects on each individual is different, and some are more severe than others, but in all cases, sufferers of cerebral palsy are people too, and this is a celebration of them and their journey, more specifically, of Brandi’s journey. She beat the odds of possibly not walking, of having someone do every little thing for her, or just simply being a stereotypical statistic. This once quiet child, with the big smile, won’t stop talking now, has had a boyfriend before, is able to do many things for herself, and is still building to learn more. I have been teaching her how to cook (grandma Jean had her spoiled rotten, so I teach her to do more things for herself when she is at my house…loll. That’s what big sister’s are for lolll). Overall, Brandi’s progress has been a group effort of family, (siblings, mom, grandmom, aunt, etc.), teachers, counselors, and friends, but ultimately, it has been a reflection of her effort as well.
So if you are the parent of a child with Cerebral Palsy, then I praise you for your hard work, dedication, love, time, commitment, patience, and diligence, because it is just as challenging for the parent as the child, and sometimes you get overlooked in the process. That is why You Are More Than A Parent. And for those who have Cerebral Palsy, continue to live life on your level and beyond, You are Amazing and You matter. Today is March 31st, the last day of Cerebral Palsy month, however, they live with it everyday, so to me, Everyday of their life is a Celebration.
*** For parents who need support for yourself or your child with Cerebral Palsy, search the organizations in your state and contact them to see what services they offer to help you.
As Always, Create A Good Day and Cherish Each Moment That You Have. Peace and Love Parents. ~ Kiyoko D.