How Much To Spend On 2 Year Old Birthday Party 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 hers or whoever she’s talking to at the moment, I haven’t figured out who yet. I’m not sure who people will 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. The other gets unsolicited advice from people whose neighbors-brothers-cousins-child have cerebral palsy (CP). Rachel has CP, lived with it for 8 years, Jenn needs no advice, doing well.

She relies on a walker and crutches each day and 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 learned to use the toilet herself, but she cannot bathe or wash herself. He also needs help fitting braces, getting dressed, and doing most of the daily tasks we take for granted. Rachel, a self-proclaimed “fast” kid, is on track cognitively and socially, but behind in math and reading.

In May 2012, after attending her cousin’s dance recital, Rachel declared that one day she would dance in a recital without the use of her walker, which she did a year later to much applause. Her next goal is to “Run a mile”, after today she can. Today, Rachel is undergoing Selective Dorsal Rhizotomy (SDR) surgery at Boston Children’s Hospital. After surgery, Rachel learns to walk and use her legs again; spends one week at Children’s Hospital and 3-5 weeks at Spaulding Rehab in Charlestown, MA.

This story isn’t just about Rachel, it’s about Jenn, an incredibly strong woman who can keep her head above water. She somehow managed to raise 3 children, survive 2 divorces, climb the corporate ladder to vice president in 2010, and maintain her sanity with the help of her beloved wine. In addition to raising an 8-year-old child 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. When her parents divorced when she was 12, her mother almost disappeared from her life, yet Jenn somehow managed to learn what a good mom should be, and she exemplifies it daily. Although her job requires a lot of travel, most moms would enjoy a night in another city, Jenn often flies out in the morning and back in the evening to be home for her kids. Exhaustive? Yes, if it weren’t for her funny Facebook updates about annoying travelers, you wouldn’t know she left.

Besides Jenn’s wry sense of humor, her favorite way to insult someone is to call them a douchecanoe. I am grateful to her for that word, sometimes I say it just to laugh. It never fails to put a smile on my face when I log in and see that someone has earned that name. Honestly, 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’s recently taken up running as a way to relieve stress and get in shape, she’s become a bit more forgiving of the ignorant.

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

This weekend, more than 60 children participated in “Rachelpalooza,” a pre-op event with cotton candy, a magician and a bouncy house. Although she is very popular, Rachel was invited to 1 birthday party last year and the only houses she sleeps at are her family’s. It’s not because the kids don’t want her there, it’s because the adults have trouble seeing Rachel. Jenn is afraid that she will see a broken child, not the joy that she is. By hosting Rachel in my home and sharing a beach house with them, I actually found Rachel easier to manage than my own children.

I’ll be honest, as adorable as she is, I was nervous when she first came. She needed to be carried a lot, she couldn’t go to the bathroom and I had no idea how to handle special needs children, which included stretching her everyday. I found a funny, engaging kid 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 have an obligation 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 kids see Rachel for what she is, another kid. The 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 to learn, emotional, uncoordinated, prone to allergies; you name it, someone has it. We all have a flaw, Rachel’s is visible, ours may not be. Unless you’ve been around Rachel or another kid like her, it’s hard to explain. Rachel is genuine, she doesn’t know she’s different, and her seriousness 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; if you don’t get an eyebrow from Jenn, then there’s no hug or smile.

As you go about your day today, think of Jenn, waiting at the hospital to hear that the surgery was a success. She is about to embark on a six-week journey that will take an emotional toll on her and her entire family. After weeks of preparation, she finds 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 in pain. Don’t be a douchecanoe, be nice to everyone, you never know whose child is hurting.

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