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Thursday
May242007

Roxanne

Roxanne was graduating from high school so Sarah, Meghann, her husband and I were flying in to be proud “family members” and watch her walk across the stage, accepting her leather diploma cover and then joining the family for a large dinner at TGIFriday’s afterwards. It was to be a grand event.

Roxanne is extremely mentally disabled. She’s 6’2” tall and weighs 95 pounds. In constant motion, she easily eats about 4000 calories a day.

I attended Roxie’s birth 22 years ago and no one knew there was anything wrong except Anne had hyperemesis gravidarum during the pregnancy and she was extremely small for gestational age. Her doctor, now that I look back, was too lackadaisical and should have put Anne in the hospital and probably medicated her. Anne also had/has a number of cats and the genetic specialist suspected an infection with toxoplasmosis as another overlying cause for Roxie’s condition.

When Roxie didn’t nurse well, it was extremely frustrating for Anne and I asked her if I could nurse her; I was nursing Meggie at the time and Anne said sure. Anne’s baby nursed like a butterfly and that explained her massive weight loss and immediate need for supplementation. She was on preemie formula for over a year because she had no suck and no desire to eat for well over a year.

Even though Anne took Roxie to the pediatrician, they weren’t too concerned with her physical development despite it being very, very behind the typical milestones. She didn’t roll over front to back for over 9 months, didn’t roll over back to front until 16 months, sit up until 18 months… and it was about then that Anne’s mom, a nurse finally was able to urge Anne to see a specialist for what was going on with her child.

Many tests could not determine anything, but she was immediately started in therapies to halt delays and jump-start any progress that could possibly be done.

Roxie plateaued at about 2.5-3 years old… taking 8-9 years to learn to pee in the toilet (she still wears diapers at night), learning about 10 words, 20 signs and has serious impulse control issues. However, she is an absolute joy to be around most of the time. She is (almost) always happy, has more pain tolerance than anyone else I have ever seen (unless you touch her head… all her pain receptors seem to be in her head… it is the only time I have seen her cry, when her hair is brushed), and has a great memory for things she loves – and a selective memory for things she doesn’t like.

Rox has this thing for paper and plastic… she loves to fold it… loves to crinkle. She can smell paper and seeks it out as any addict and folds from morning to night, making piles and piles of tightly folded computer paper, lined paper, advertisements left on cars, business cards, baggies, grocery bags, construction paper or books (if unsupervised long enough). We’ve often wished we could teach her origami (and have tried) because we figured we could sell millions of cranes and Roxie could make a living through her folding compulsion.

She also loves to play with hair and those around her have gotten used to her playing with their hair, no matter how hard they worked to get it a certain way; it’s just the way it is when around her Roxanne. I love her playing with my hair! It feels so good. When Anne said she was going to take the family to Meggie’s wedding, Meghann said she’d even let Roxie come and play with her hair while she was on the altar. Now that’s love right there! And an understanding beyond superficiality that yanked at my core, pulling pride for my daughter and her love and kindness for another human being.

So, Roxanne was graduating from high school after being there for 9 years. It was a huge deal to all of us. It was worthy of a trip to Orlando.

The graduation itself was obnoxious. What has happened to kids today? There were arrests during the event because of rowdiness, kids around us cussing worse than anyone I’d heard before – completely without shame -, parents that blatantly refused to obey the instructions of the ushers, standing where they wanted to, talking loudly on their cell phones even during the Pledge of Allegiance and the National Anthem; it was all just disgusting.

The school had five Valedictorians and each of them spoke. After every two, a senior singer did her best to belt out a ballad. Why they didn’t sing upbeat “I’m graduating and not coming back here!” songs is beyond me. Instead, the songs were as boring as dirt and harder to understand over the O-rena PA system. While the young women sang, however, was the only time when the students seemed to understand the meaning of manners and were quiet and applauded appropriately. Somewhere they knew what to do. They merely chose when to use their skills.

Roxie sat on the sidelines, her last name beginning with an R, she had to wait the 2.5 hours before her turn in the alphabet was called. She was the best behaved of all the kids. We were all so proud of her!

When it was time for Roxanne to stand and join the line, her escort walked with her. There she was, in red cap and gown… I took as many pictures as I could from the distance I was across the O-rena… I was beaming with joy! Wiggling in line, fidgeting, her teacher pushed her arms down from playing with the girl’s hair in front of her.

Slowly they made their way to the stage and the line of congratulatory officials smiled seeing Roxanne, offering their hands to shake, knowing her from so many years in the same school. Laughing, we watched as she picked and chose who she was going to shake hands with and who she wasn’t… you? Yes. You? Nope. You? Okay. You? Nope. Down the line like that. It was so funny to see because there was no rhyme or reason and when she denied her hand; she crossed her arms tightly under her armpits and shook her head hard – leaving no mistake about her feelings on the matter. When she embraced the next person’s hand, she opened up her body, sometimes gave full body hugs, sometimes hearty handshakes, but always giant smiles and lots of laughter and shaking “yes” up-and-down head movements. It really was the best scene of the whole graduation.

As she was handed her cardboard empty diploma holder, she tried to fold it, but it wouldn’t, so she tossed it to the teacher and headed off the stairs. I was at the edge of the stadium seating, able to take pictures from there as she exited and called her name – she saw me and called, “Aunt Barb!” and signed an emphatic, “Hungry!” I laughed and took a picture as she dropped her hand.

TGIFriday’s is Roxanne’s favorite restaurant, so was the perfect spot to go with the 15 of us that night. Her brother and sisters, mother, father, sister’s friends, brother’s girlfriend, Meghann, her husband, Sarah and I… it was loads of fun. Roxie received presents of notebooks of paper and Ziploc bags. Easy to buy for, she was ecstatic, as always.

Rox’s siblings know that if anything happened to Anne and Kenny, they would be enlisted to take care of her forever. Sarah and I have said that we would also take her into our lives if necessary. Anne’s kids are as much mine as my own. I lived with Anne and Kenny for a number of years when I was disabled – they took me and my kids in when I had nothing, no questions asked, no asking for money or anything. I owe them so, so much.

In another post, I am going to address Kenny and the issues he has – to demonstrate the incredible patience and beauty that is my friend Anne.

Going home’s purpose was for Roxanne’s graduation – All of us were thrilled to do it. It was so important to be there to watch as she walked across the stage.

And she did.

Reader Comments (2)

How inspiring! She sounds like a delightful girl full of love and wonder. Thanks for sharing. It just shows you that people truly can accomplish anything they set their minds and hearts to.
Wendi

May 25, 2007 | Unregistered CommenterAnonymous

Congrats to Roxie! I sure didn't couldn't have handled high school for 9 years!

I'm so glad that I'm not the last one on the planet calling it the O-rena!

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