Jenn, Rachel and Cerebral Palsy

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On a typical day, Rachel can be found wearing, or trying to wear, a tutu; Jenn can be seen wearing one eyebrow raised much higher than the other questioning the sanity of either herself, or whomever she is talking to at the moment, I haven’t figured out which yet. I am not sure which people notice first, Rachel’s tutu or her walker. Occasionally, Jenn admits to losing her temper and asking people if they have vision problems, it’s one of the biggest challenges she deals with; people staring. The other is getting unsolicited advice from people whose next-door-neighbors-brothers-cousins-kid has Cerebral Palsy (CP). Rachel has CP, having lived with it for 8 years, Jenn does not need any advice, she is doing just fine.

Relying on a walker and crutches to get around, each day contains 20 minutes of stretching in the morning and the evening with the help of her Mom or one of her siblings. Rachel’s independence is limited, she has mastered using the toilet on her own but can’t bathe or wash herself. She also needs help strapping on her braces, dressing herself, and performing most day-to-day tasks we take for granted. A self-proclaimed “sped” kid, Rachel is cognitively and socially on track, but behind in Math and Reading.

 

In May 2012, after attending her cousin’s dance recital, Rachel declared that she would dance in a recital some day without the use of her walker, a year later she did and received a standing ovation.  Her next goal is to “Run a Mile”, after today, she just may. Today Rachel is undergoing  Selective Dorsal Rhizotomy (SDR) surgery at Children’s Hospital in Boston. After the surgery, Rachel will relearn how to walk and use her legs; she will spend one week at Children’s Hospital and 3-5 weeks at Spaulding Rehab in Charlestown, MA.

This story isn’t supposed to be solely about Rachel, it’s supposed to be about Jenn, an incredibly strong woman that manages to keep her head above water. Somehow she has managed to raise 3 children, survive 2 divorces, climb the corporate ladder to Vice President in 2010 and retain her sanity with the help of her beloved wine. In addition to raising an 8-year-old with CP, she also has a 16-year-old daughter and a 14-year-old transgender son. Yes, you read correctly, Jenn has her hands full!

Jenn is one of many examples of bad parenting gone good. When her parents divorced at age 12, her mother all but disappeared from her life yet somehow Jenn managed to know what a good Mom should be, she exemplifies it daily. Although her job requires a lot of travel, most Moms would relish a night away in a different city, Jenn often flies out in the morning and back at night so she can be home for her kids. Exhausting? Yes, were it not for her funny Facebook updates about annoying travelers, you wouldn’t know she had gone.

In addition to having a wry sense of humor, Jenn’s favorite way to insult someone is to call them a douchecanoe. I am thankful to her for this word, sometimes I say it just to make myself laugh. It never ceases to bring a smile to my face when I log in and see that someone has earned the name. Frankly, I think she’s earned the right to call them whatever she wants. Unfortunately for me, she doesn’t use it as much as she used to, she recently took up running as a way to ease stress and get in shape, she’s become a little more forgiving of ignorant people.

Jenn has advocated for Rachel and is determined to give Rachel the best life possible. She has sought out several types of physical therapy, both conventional and unconventional. Some people may feel that Rachel is spoiled, having so many activities, but the activities are a filler, they are making up for the shortcoming of society. People don’t just stare at Rachel, they exclude her.

This weekend, over 60 children attended ‘Rachelpalooza’, a pre-op send off complete with cotton candy, a magician and a bouncy house. Though she is very popular, Rachel was invited to 1 birthday party last year and the only homes she has slept over are those of her family. This isn’t because the kids don’t want her there, it’s because the adults have a hard time seeing Rachel. Jenn fears they see a broken child, not the joy she is. Having hosted Rachel at my house and shared a beach house with them, I have actually found Rachel easier to manage than my own kids.

I’ll be honest, as adorable as she is, I was leery the first time she came over. She needed to be carried a lot, couldn’t use the toilet and I had no idea how to manage a special needs kids, which included her daily stretching. What I found was a funny, engaging child who didn’t hesitate to tell me what she needed, when she needed it and if I was doing something wrong. She also gave Brandon his most accurate nickname – Random. We should all be required to spend a day with a special needs child. It would make us more tolerant and realize they are people, not things.

Children see Rachel for what she is, another child. Adults see Rachel for what they don’t want her to be, their own child. We all want our kids to be perfect – happy and healthy. What we don’t realize is that each one of us, and our kids, is handicapped in some way, it’s just not as obvious. They are neurotic, slow learners, emotional, uncoordinated, prone to allergies; you name it, someones got it. We all have a shortcoming, Rachel’s is visible, ours may not be. Unless you have been around Rachel, or another child like her, it’s hard to explain. Rachel is genuine, she is she doesn’t know she is different and her earnesty is endearing. She can be difficult, demanding and moody, just like anyone else. But she is also more forgiving, less biased and incredibly loving. Like her mother, Rachel greets everyone with a hug and a smile; unless you get the eyebrow from Jenn, then there is no hug or smile.

As you go about your day today, think about Jenn, she is waiting at the hospital to hear that the surgery was a success. She is about to embark on a 6 week journey that will take an emotional toll on her and her entire family. After weeks of preparation, she will find the courage and the strength to get up each day and push forward, not for herself, for her children. While you are angry that the line at the coffee shop is too long, she will be angry that her daughter is in pain. Don’t be a douchecanoe, treat everyone kindly, you never know whose child is in pain.

Read more about Jenn and her family by reading Part 2 of this weeks spotlight. Check out the Jenn as the first Human of the Week!

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  1. […] does justice to the person I am spotlighting. There is an abundance of information on the web about Cerebral Palsy, Sudden Cardiac Arrest and Asperger’s, guess who knows where to find it! It’s not easy, […]

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