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Jenn, Rachel and Cerebral Palsy
On a typical day, Rachel can be found wearing or trying to wear a tutu; Jen can be seen with one eyebrow raised much higher than the other, questioning the sanity of her own or whoever she’s currently talking to, I haven’t figured out which yet. I’m not sure which people notice first, Rachel’s tutu or her walker. Jen admits that sometimes she loses her temper and asks people if they have vision problems, which is one of the biggest challenges she faces; people are watching. The other is getting unsolicited advice from people whose neighbors-siblings-cousins-child has cerebral palsy (CP). Rachel has CP, lived with it for 8 years, Jen doesn’t need advice, she’s doing well.
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 mom or one of her siblings. Rachel’s independence is limited, she has learned to use the toilet on her own, but cannot wash or wash herself. She also needs help with braces, dressing herself, and most of the daily tasks we take for granted. A self-proclaimed “rapid” child, Rachel is on track cognitively and socially, but behind in math and reading.
In May 2012, after attending her cousin’s dance concert, Rachel announced that one day she danced in a concert without using a walker, but a year later she did so and received a standing ovation. Her next goal is to “Run a mile”, after today she just can. Rachel is undergoing Selective Dorsal Rhizotomy (SDR) surgery today at Boston Children’s Hospital. After the operation, 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 isn’t just about Rachel, it’s about Jen, an incredibly strong woman who can 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 keep 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 that right, Jen has her hands full!
Jen is one of the many examples of bad parenting. When her parents divorced when she was 12, her mother almost disappeared from her life, yet Jen somehow managed to know how to be a good mom, she shows it every day. Although her job requires a lot of travel, most moms would love to spend the night in another city, Jen often flies out in the morning and returns at night so she can be home with 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 weird sense of humor, Jen’s favorite way to insult someone is to call them a duchen. I am grateful to her for this word, sometimes I say it just for a laugh. It never ceases to bring a smile to my face when I log in and see that someone has earned that 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 started running as a stress reliever and to get in shape, she’s become a little more tolerant of the ignorant.
Jen has stood up for Rachel and is committed to giving Rachel the best life possible. She has sought out several forms of physical therapy, both conventional and unconventional. Some people may think that Rachel is spoiled, with so many activities, but the activities are filling, they make up for the lack of society. People don’t just stare at Rachel, they shut her out.
This weekend, over 60 kids attended “Rachelpalooza,” a pre-op send-off with cotton candy, a magician and a bouncy house. Although she is very popular, Rachel was only invited to 1 birthday party last year and the only houses she has slept in are 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. Jen is afraid that they will see a broken child instead of the joy that she is. Having Rachel in my house and sharing a beach house with them, I found that Rachel was easier to manage than my own children.
I’ll be honest, as adorable as she is, I was squeamish when she first arrived. She had to be carried a lot, couldn’t use the toilet, and I had no idea how to manage children with special needs that included her daily stretching. What I discovered was 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 more accurate nickname – Random. We should all spend a day with a child with special needs. It would make us more tolerant and understand that these are people and not things.
The kids see Rachel for who she is, another kid. 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. We do not realize that each of us and our children are disabled in some way, but it is not so obvious. They are neurotic, slow to learn, emotional, uncoordinated, prone to allergies; name one who got it. 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 genuine, she doesn’t know she’s different, and her earnestness 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 an eyebrow from Jen, no hugs, no smiles.
Think of Jen today, she is waiting in the hospital to find out that the operation 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 move forward, not for herself, for her children. While you are angry that the line at the cafe is too long, she will be angry that her daughter is in pain. Don’t be angry, be kind to everyone, you never know which child is hurting.
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