Is 5 5 Short For A 14 Year Old Boy Jenn, Rachel and Cerebral Palsy

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Jenn, Rachel and Cerebral Palsy

On a typical day, Rachel can be found wearing, or trying to wear, a tutu; Jenn can be seen with one eyebrow raised much higher than the other questioning the sanity of either herself, or whoever she’s talking to at the moment, I haven’t figured out which yet. I’m not sure which people notice first, Rachel’s tutu or her walker. At times, Jenn admits she loses her temper and asking people if they have vision problems is one of the biggest challenges she faces; people stare. Another is getting unsolicited advice from people whose neighbor-neighbors-siblings-cousins-child has cerebral palsy (CP). Rachel has CP, having lived with it for 8 years, Jenn doesn’t need any advice, she’s just fine.

Relying on a walker and crutches to get around, each day includes 20 minutes of stretching in the morning and evening with the help of her mom or one of her siblings. Rachel’s independence is limited, she has mastered using the toilet independently, but she cannot bathe or wash herself. She also needs help tying braces, getting dressed and doing most of the everyday tasks we take for granted. A self-proclaimed “speed” 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 stated that one day she would dance in a recital without the use of a walker, a year later and received a standing ovation. Her next goal is to “Run a Mile”, after today, she just can. Today, Rachel underwent Selective Dorsal Rhizotomy (SDR) surgery at Boston Children’s Hospital. After the surgery, Rachel will learn to walk and use her legs again; she will spend one week at Children’s Hospital and 3-5 weeks at Spaulding Rehab in Charlestown, MA.

This story shouldn’t just be about Rachel, it should be about Jenn, an incredibly strong woman who manages to keep her head above water. Somehow, she managed to raise three children, survive 2 divorces, climb the corporate ladder to vice president in 2010, and keep her sanity with the help of her beloved wine. In addition to raising an eight-year-old with CP, she also has a 16-year-old daughter and a 14-year-old transgender son. Yes, you read that right, Jenn has her hands full!

Jenn is one of many examples of bad parenting turned good. When her parents divorced when she was 12, her mother almost disappeared from her life, but Jen somehow managed to know what a good mother should be, she shows it by example every day. Although her job requires a lot of travel, most moms would enjoy a night out in another city, Jen often flies out in the morning and comes back in the evening so she can be home for her kids. Exhausting? Yes, if it weren’t for her funny Facebook updates about annoying travelers, you wouldn’t know she was gone.

Besides having a twisted sense of humor, Jenna’s favorite way to insult someone is to call them a jerk. I am grateful to her for this word, sometimes I say it just to laugh. It never ceases to bring a smile to my face when I log in and see that someone has earned a name. Honestly, I think she’s earned the right to call them whatever she wants. Unfortunately for me, she doesn’t use it like she used to, she’s recently taken up running as a way to relieve stress and get in shape, she’s a little more forgiving of the ignorant.

Jenn has stood up for Rachel and is determined to give Rachel the best life possible. She sought several types of physical therapy, both conventional and unconventional. Some people may feel that Rachel is spoiled because there are so many activities, but the activities are full, they make up for the lack of company. People don’t just stare at Rachel, they turn her off.

This weekend, over 60 children attended ‘Rachelpalooza’, a pre-surgery send-off complete with cotton candy, a magician and a bounce house. Although she is very popular, Rachel was invited to 1 birthday party last year and the only homes she slept in were her family’s. It’s not because the kids don’t want her there, it’s because it’s hard for adults to see Rachel. Jenn is afraid that they see a broken child, not the joy that she is. Having hosted Rachel at my house and shared a beach house with them, I actually found Rachel easier to manage than my own children.

To be honest, as lovely as she is, I was grumpy when she first came. She had to be carried a lot, she couldn’t use the toilet, and I had no idea how to deal with children with special needs, which included stretching her every day. 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 are all asked to spend a day with a child with special needs. It would make us more tolerant and realize that they are people, not things.

The children see Rachel for who she is, another child. Adults see Rachel as what they don’t want her to be, their own child. We all want our children to be perfect – happy and healthy. What we don’t realize is that each of us, and our children, are handicapped in some way, it’s just not so obvious. They are neurotic, slow learners, emotional, uncoordinated, prone to allergies; just the name, someone figured it out. We all have a flaw, Rachel’s is visible, ours may not be. Unless you’ve been around Rachel, or another child like her, it’s hard to explain. Rachel is honest, she doesn’t know she’s different and her honesty is endearing. She can be difficult, demanding and moody, just like everyone 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 an eyebrow from Jenn, then no hugs or smiles.

As you go about your day today, think about Jen, she is waiting in the hospital to hear that the surgery was a success. She will soon embark on a six-week journey that will take an emotional toll on her and her entire family. After weeks of preparation, she will find the courage and strength to get up every day and move forward, not for herself, but 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 hurting her. Don’t be a fool, be kind to everyone, you never know whose child is hurting.

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