A 20-Year-Old Man Comes To The Emergency Department 8 Hours Jenn, Rachel and Cerebral Palsy

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Jenn, Rachel and Cerebral Palsy

On a normal day, Rachel would be spotted wearing or trying to wear a tutu; Jenn could be seen with one eyebrow much higher than the other, questioning her own sanity, or who she was talking to right now, I wonder Didn’t figure out which one. I’m not sure who noticed first, Rachel’s tutu or her baby walker. Jenn admits to throwing out occasional tantrums and asking people if they have vision problems is one of the biggest challenges she deals with; people staring. Another was getting unsolicited advice about cerebral palsy (CP) from their next door neighbor brother cousin’s kid. Rachel has CP and has lived with it for 8 years, Jenn doesn’t need any advice, she’s doing just fine.

Gets around with a walker and cane, and does 20 minutes of stretching every morning and evening with the help of her mom or one of her siblings. Rachel has limited independence and can use the toilet by herself, but cannot bathe or wash herself. She also needs help getting her braces on, dressing herself, and performing most of the everyday tasks we take for granted. Rachel’s self-described “very fast” child was on track cognitively and socially, but lagged behind in math and reading.

In May 2012, after attending her cousin’s dance recital, Rachel announced that she would one day dance without a walker at the recital, which she did a year later and received a standing ovation . Her next goal is to “run a mile,” and after today, she will be able to. Today, Rachel is undergoing a selective dorsal rhizotomy (SDR) surgery at Boston Children’s Hospital. After surgery, Rachel will relearn how to walk and use her legs; she will spend a week at Children’s Hospital and 3-5 weeks at Spaulding Rehabilitation Center in Charlestown, MA.

This story shouldn’t just be about Rachel, it should be about Jen, a very strong woman who manages to keep her head above water. Somehow, she managed to raise 3 kids, survive 2 divorces, get promoted to corporate vice president in 2010, and keep her sanity with the help of her beloved wine. In addition to raising an 8-year-old 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 at the age of 12, her mother nearly disappeared from her life, but somehow, Jen managed to know what a good mother should be, and she led by example every day. Although her job requires a lot of travel, most moms would love to spend the night in a different city, and Jenn often flies out in the morning and back in the evening so she can go home and take care of the kids. exhausted? Yep, you wouldn’t know she’s gone if it wasn’t for her funny Facebook updates about nasty travelers.

Aside from having a sarcastic sense of humor, Jen’s favorite way to insult someone is by calling them a douchecanoe. Thank her for this quote, which I say sometimes just to make myself laugh. It never ceases to bring a smile to my face when I log in and see someone has earned this name. Frankly, I think she has the right to call them whatever she wants. Unfortunately for me, she doesn’t use it as much as she used to, she’s recently started running as a way to reduce stress and keep in shape, and she’s become more forgiving of ignorant people.

Jenn defends Rachel and is determined to give Rachel the best life possible. She has found several types of physical therapy, both traditional and unconventional. Some people might think that Rachel is spoiled with so many activities, but activities are a filler, making up for the shortcomings of society. People not only stared at Rachel, they repelled her.

This weekend, more than 60 children attended “Rachelpalooza,” a pre-surgery send-off event complete with marshmallows, magicians and a bouncy house. Despite her popularity, Rachel was invited to a birthday party last year and the only house she ever slept in was her family’s house. It’s not because kids don’t want her there, it’s because it’s hard for adults to see Rachel. Jen fears they see a broken child, not her joy. After hosting Rachel in my family and sharing a beach house with them, I actually found Rachel easier to manage than my own kids.

To be honest, as cute as she is, I was skeptical when she first came. She needs to be held a lot, can’t go to the bathroom, and I don’t know how to take care of a child with special needs, including her daily stretches. What I found was a fun, engaging kid who didn’t hesitate to tell me what she needed, and when, if I did something wrong. She also gave Brandon the most accurate nickname-Random. We should all be asked to spend a day with a child with special needs. It makes us more forgiving and realize they are people, not things.

The kids saw Rachel for what she was, another kid. The adults see Rachel as something 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 flawed in some way, it’s just not as obvious. They’re neurotic, slow learners, emotional, uncoordinated, and prone to allergies; you name it, and someone knows. We all have a flaw, Rachel’s is visible, ours may not be. It’s hard to explain unless you’re with Rachel or another kid like her. Rachel is genuine, she doesn’t know she’s different, but her sincerity is lovely. Just like everyone else, she can be difficult, demanding, and moody. But she’s also more tolerant, less prejudiced and incredibly loving. Like her mother, Rachel greets everyone with a hug and a smile; no hugs or smiles unless you get eyebrows from Jenn.

As you go about your day today, think of Jenn, who is in the hospital awaiting news that her surgery was successful. 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 each day and push forward, not for herself but for her baby. When you get mad at the coffee shop line, she gets mad at her daughter’s pain. Don’t be a canoe, be kind to everyone, you never know whose child is suffering.

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