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Jenn, Rachel and Cerebral Palsy
On a typical day, Rachel can be found wearing a tutu; Jenn can be seen with one eyebrow raised much higher than the other, questioning the sanity of herself, or whoever is speaking at the moment, I don’t know who. I’m not sure what people notice first, Rachel’s tutu or her walker. On occasion, Jenn admits losing her temper and asking people if they have vision problems is one of the biggest challenges she deals with; people watching. The other is to receive unsolicited advice from people whose neighbors-siblings-cousins-next-door have Cerebral Palsy (CP). Rachel has CP, having lived with it for 8 years, Jenn doesn’t need counseling, she’s fine.
He relies on a walker and crutches to get around, every day contains 20 minutes of stretching in the morning and evening with the help of his mother or one of his brothers. Rachel’s independence is limited, she has mastered using the toilet on her own, but she cannot bathe or wash herself. She also needs assistance to fasten her braces, get dressed, and do most of the daily tasks that we take for granted. A self-proclaimed “speed” child, Rachel is cognitively and socially behind, but behind in math and reading.
In May 2012, after attending her cousin’s dance recital, Rachel stated that she danced in a recital one 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 only can. Today Rachel is undergoing selective dorsal rhizotomy (SDR) surgery at Children’s Hospital in Boston. After the surgery, Rachel will learn to walk again and use her legs; she will spend a 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, he managed to raise 3 children, survive 2 divorces, climb the corporate ladder to Vice President in 2010 and maintain his sanity with the help of his beloved wine. In addition to raising an 8-year-old boy 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 gone right. When her parents divorced at the age of 12, her mother almost disappeared from her life, but somehow Jenn knew what it takes to be a good mother, she exemplifies it every day. Although her job requires a lot of travel, most Moms would love a night in a different city, Jenn often flies out in the morning and back at night so she can be home for her kids. exhausted? Yes, if it weren’t for her hilarious Facebook updates about annoying travelers, you wouldn’t know she was gone.
Besides having a sense of humor, Jenn’s favorite way to insult someone is to call them a douchecanoe. I thank him for this word, sometimes I say it just to make him laugh. It never fails to bring a smile to my face when I log in and see that someone has won the name. Frankly, I think he’s earned the right to call it whatever he wants. Unfortunately for me, I don’t use it as much as I used to, it has recently taken up running as a way to relieve stress and get in shape, it has become a little more forgiving of the ignorant.
Jenn has advocated for Rachel and is determined to give Rachel the best life possible. He tried many types of physical therapy, both conventional and non-conventional. Some may feel that Rachel is spoiled, having so many activities, but the activities are a filler, they compensate for the lack of society. People don’t just stop at Rachel, they exclude her.
This weekend, more than 60 children attended “Rachelpalooza,” a pre-operational send-off complete with cotton candy, a magician and a bouncy house. Although she is very popular, Rachel was invited to her 1st birthday party last year and the only houses she has slept over are her family’s. This isn’t because kids don’t want her there, it’s because adults have a hard time seeing Rachel. Jenn fears that they will see a broken child, not the joy that she is. After welcoming Rachel into my home and sharing a beach house with them, I found Rachel easier to manage than my children.
I’ll be honest, as adorable as she is, I was grossed out when she first arrived. She needed to be carried a lot, she couldn’t use the toilet and she had no idea how to manage a child with special needs, which includes her daily stretching. What I found was a fun and engaging kid who didn’t hesitate to tell me what I needed, when I needed it and if I did something wrong. He also gave Brandon his most accurate nickname – Random. We should all be asked to spend a day with a child with special needs. It would make us more tolerant and understand that they are people, not things.
The children see Rachel for what she is, another child. The adults see Rachel for what they don’t want her to be, their child. We all want our children to be perfect – happy and healthy. What we do not understand is that each of us, and our children, is handicapped in some way, it is not so obvious. They are neurotic, slow learners, emotional, uncoordinated, prone to allergies; the name, someone got it. We all have a flaw, Rachel is visible, ours may not be. Unless you’ve been around Rachel, or another child like her, it’s hard to explain. Rachel is genuine, she doesn’t know that she is different and her seriousness is endearing. It can be difficult, demanding and moody, like anyone else. But he is also more forgiving, less prejudiced and incredibly loving. Like her mother, Rachel greets everyone with a hug and a smile; Unless you get an eyebrow raise from Jenn, then there’s no hug or smile.
When you have your day today, think of 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 strength to get up every day and push forward, not for her, 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 in pain. Don’t be a douchecanoe, treat everyone kindly, you never know who’s a child in pain.
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