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Our Daughter, the Princess

May 21, 2018 by Paul Van Heest 2 Comments

On the weekend of the royal wedding, Gabriella got to play the princess not once, but twice.

Last week, her adult day program at Ladacin held their annual spring fling gala. Then on Saturday came the Lakeview School prom, to which she and other alumni are always invited. Our daughter got dressed up and attended both.

Thursday’s gala had a Red Carpet theme, and the Ladacin clients were encouraged to wear black, red and gold. Gabriella wore a black-and-white dress with hot pink highlights, topped with a black sweater. Her black shoes had hot pink accents.

Gabriella was attended by her mom and her nurse. Among the clients, each lady received a corsage (boutonnières for the gentlemen), and hers had a pink carnation to match her outfit.

The staff worked very hard to relocate the program to the hall, transporting equipment, feeding supplies and medicines as needed. They spent all their time ensuring the clients enjoyed themselves, including moving those who were able to do so into standers to allow them to dance upright. Gabriella listened to the music in her wheelchair.

The decorations reflected the theme, featuring a photo booth area with a red carpet and centerpieces with film reels. The art director presented each classroom with a “Laddie award” customized to recognize their own personality.

Our daughter’s classroom, along with staff and some parents, occupied three tables. Guests dined on a variety of entrees, and Gabriella ate pureed penne with vodka sauce. Throughout the afternoon, she observed the activity with interest. It was great to see she has made friends among the clients at the program, with two asking for photographs with her. Her warm smile melted hearts everywhere, including her father’s later on at home.

Two days later, Lisa and I joined her at her eighth Lakeview prom. This has become an event that our daughter looks forward to for weeks in advance, growing excited each time we brought it up.

The prom was held at The Pines Manor, the same site as each of the prior seven, although the school had the event at several other locations following its debut in 1991. As usual, the room was spacious and the wait-staff cheerful and ready to provide whatever help was needed.

Gabriella wore a flowing pink dress with a white sweater and silver slippers. The carnation from the gala was still fresh and matched her attire perfectly. She arrived in her adapted minivan, and was escorted through the rain by her father with a golf umbrella, then into the hall by her mother wearing black-and-white.

The DJ played soft ballads while the guests ate, but soon after increased the tempo. Gabriella danced with her parents and with friends, enjoying being whirled in her chair. At times the music became overwhelming, but her noise-reducing headphones helped to put her at ease.

The buffet included chicken, sausage-and-peppers, and baked ziti, and they pureed a combination to give her a mixture of flavors. Gabriella enjoyed the blend, offset by applesauce. Dessert was a white sheet cake.

The thirteen students soon to graduate from Lakeview gathered before the ice sculpture to be honored with a special serenade. Then, in a new development, the DJ called forth all the alumni. Roughly twenty adults took the floor, and he played “That’s What Friends are For”. (And yes, I got that familiar clutch in my throat…)

Twice over a three-day period, our daughter celebrated with her current and former classmates. While she was not named a duchess, she played princess. It’s a role she’s always loved, and one that has always made her father most proud.

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Reading time: 3 min
Daily Life

Happy Birthday, Peanutgirl!

November 27, 2017 by Paul Van Heest 2 Comments

This week is Gabriella’s birthday, and family came together to celebrate this past Saturday. As we do every year, we hosted another day of food and togetherness Thanksgiving weekend.

As I’ve posted about before, the day of our daughter’s birth came at us with an avalanche of shock and change. Then the geneticist diagnosed her with Opitz trigonocephaly, which portended among other ills that Gabriella wouldn’t live a year. Reaching that milestone brought joy and relief, and every birthday after reinforced our feeling of being blessed.

As is tradition in Lisa’s family, we threw her a big first birthday party, catered in a hall with over one hundred guests and a DJ. After that, we absorbed Gabriella into the normal annual cycle.

During her eighteen years at Lakeview School, Lisa would send in cupcakes to commemorate her day. While our daughter has always eaten a pureed diet, they mashed the cake and especially the icing in milk, and Gabriella loved it. At home, we have a birthday cake and light a candle and sing Happy Birthday, softly because loud noises frighten her. Then one of us blows it out and she digs in.

For years I was unsure whether she knew the singing was for her, but now I am certain she does. She became so excited this weekend that she threw out her arm, landing it in the cake, coming away with her fingers full of whipped cream, and upending the candle and snuffing it against the tablecloth, all without burning anything.

Otherwise, Gabriella’s birthday party is not much different from a typical Sunday. We bring her to the table for as long as she can stand it (often a matter of minutes), and we put on a video or lay her down with music. The food is always delicious, and Lisa purees some for her, but I struggle that she is on the periphery at her own celebration.

We’ve tried other things. One year, we had a special party for her, including a musician who sang children’s songs, but she soon became bored and the lady performed more for the other kids. Most of all, we try to shower her with attention, which makes her happiest.

She is never short on attention – she would have it no other way – but we try extra hard to dote on her this time of year. When she’s cranky, we’re a little quicker to her side, and there are more of us to do so. (These past five years, since we started nursing coverage, she has an attendant throughout the day, and she can be overwhelmed with everyone wanting to help.)

Buying her presents can also be tricky, even for us. She grew out of stuffed animals (except for a few that accompany her to bed each night) long before she stopped receiving them as gifts. She has just a handful of favorite toys. Most practical items can’t wait for a birthday or Christmas. As a result, most of what she receives are clothes, many beautiful outfits and accessories we truly appreciate.

Over time, I’ve concluded that Gabriella’s birthday, like most things, is about us as much as her. I experience relief each year that we have surmounted the early years and come through it as a family. I appreciate all she does for me a little bit more. I know pleasure at her joy when she realizes Happy Birthday is in her honor and she clicks in delight and more so when she hears her name.

Even before she was born, I decided I wanted a nickname for our daughter. Gabriella seemed such a grandiose name for a blip on an ultrasound, and neither Lisa nor I were crazy about the usual nicknames, Gabby or the Italian Lella. (At Lakeview they called her Gabby, but we’ve never adopted it at home.) I tried out several, Pumpkin and Peanut and others. After the trauma of her birth, I found I needed something unique.

She became the Peanutgirl. I created my own lyrics for songs (for example, the Beach Boys’ Little Surfer Girl turned into Little Peanutgirl), even though I don’t sing for anyone but her. Twenty-three years later, that’s still how we refer to her.

So Happy Birthday, Peanutgirl!

 

 

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Daily Life

Why I Feel Special on Father’s Day

June 18, 2017 by Paul Van Heest No Comments

Today is Father’s Day. From that first June after Gabriella’s birth, it’s been a day I’ve cherished.

In 1997, it came as a relief to have exceeded six months and still have our daughter with us. By the second Father’s Day, we had bypassed a year and had begun to put the prophecy of the diagnosis behind us. And the third third-Sunday-in-June brought a new blessing, celebrating our “normal” son as well as our “unique” daughter.

Those early Father’s Days were three-generation affairs, but far too soon we lost Lisa’s father, and then we lost mine after a seven-year battle with Alzheimer’s. Both were ideal role models, not only devoted fathers but humble, generous men.

I think what I love most about Father’s Day is that I get to experience it with my two so-different children. It’s a time to celebrate their differences and what that means for my life as a dad: the writing prizes and the midnight diaper changes, settling him into his new college apartment and hunting for her new bath chair, Skyping while he is studying abroad and walking her around to keep her calm in the doctor’s office, hearing about his day at his internship and reading about hers at her day program.

I get to share postmodern literature with Alexander and Sandra Boynton board books with Gabriella, watch Saturday Night Live sketches with my son and Sesame Street segments with my daughter.

We celebrated graduations with our son at every step along the educational spectrum, and a single big event for our daughter when she aged out of Lakeview School. Sometimes we push him to say a little more; sometimes we plead with her to whinge a little less.

One thing I frequently have to re-learn is balance. That means not smothering him while always snuggling her, but not neglecting him in the wake of all we need to do for her. It means giving him enough attention when she’s demanding our full focus, and it means challenging her enough while giving him the space he needs.

When I was younger, I looked forward to being a father. I could never have foreseen the altitude of the joys or the depths of the terrors.

Today is a day to reminisce and to anticipate. Alexander won’t be up until late morning and will need some time (and coffee) to shake off the night. Gabriella was up before we were, and she greeted our arrival downstairs with her usual clicks and delight.

Ours is a different sort of family, blessed with riches and constrained by limitations. Perhaps the best part is having a partner to share the whole crazy tangle of our life. While I couldn’t be a father without these two amazing kids, I also couldn’t be their Dad without their incredible Mom.

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