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Daily Life

What a Difference a Mom Makes

May 13, 2018 by Paul Van Heest 2 Comments

Today is Mother’s Day, a time when people across America and around the world celebrate the incredible women who make our families what they are.

Lisa and I are lucky enough to still have our mothers with us, both kind and generous, nurturing and caring. We’ve learned a lot from our moms, and they’ve made us better parents. Lisa’s sister is an amazing mom, as are my brothers’ wives. And we have good friends who are great mothers. All of them inspire us.

But today, I want to recognize the remarkable difference in Gabriella’s life because of her mom, Alexander’s mom, my wife.

Once any woman becomes a mother, she accepts a lifelong role. Even though Alexander came second, I got to see Lisa embrace “normal motherhood” with all its joys and worries. She encouraged him to take chances and set guardrails to teach judgment, and she glowed with pride when he learned these lessons well.

Something about parenting a child like Gabriella introduces a different intensity. All new parents know the feeling of awe that comes with holding a newborn, with knowing that this child’s well-being is literally in your hands. Our daughter will never face many hazards that come with adolescence and adulthood, but her health risks were more severe from the start. Expectations, for her future and for our lifestyle, reset again and again, requiring a different kind of acceptance process. It takes a special resolve to go on devoting as much attention after two decades to concerns that most children outgrow as toddlers. Lisa’s commitment, her vigilance, has never flagged.

Everything takes longer, not only child development but the endless wait for services and bureaucracies. Obstacles are magnified tenfold, and so does the need for patience. Over all these years, Gabriella’s mom has dedicated so much of her time to keeping her safe and clean and comfortable and happy.

When Gabriella was born, she gave up her career in medicine. After practicing as a physician assistant for several years, she had transitioned to the medical school, teaching in the PA program. Early on, she found her healthcare knowledge to be both helpful and frustrating, like a half-drawn map of a dark forest. It helped us navigate through new symptoms or diagnoses, but it also caused us to seek patterns where few exist.

But that hasn’t prevented me from depending on her expertise every day, as a model and teacher, from administering syringes to operating equipment. Just this week, she worked with Gabriella’s health insurance company on a medicine they denied. While her doctor deemed it medically necessary on an ongoing basis, they rejected it after 90 days. They often say no. Lisa engaged in many calls with the doctor’s office and the insurer to discuss alternatives in dose and form (suspension drops, dissolvable tabs). She explained that Gabriella receives her meds through a G-tube.

When one alternative proved not to be on the formulary for our plan, they suggested a compounded mixture. Lisa asked, conquering her incredulity, whether they would pay for what would surely be a more expensive format. The rep admitted it was unlikely. After five representatives in three days, she found a solution that would offer the protection Gabriella needed while meeting the insurance company’s requirements. The insurer even helped our doctor’s staff prepare the needed paperwork.

In these exchanges, Lisa showed more than her professional experience. She also exhibited the negotiation and problem-solving skills that proved so important in the corporate world. And not a little patience.

It’s this mix of skills and experiences that make Lisa an exceptional mom to two very different people. She’s leveraged the benefits of the healthcare field she left behind, while demonstrating capabilities that might have made her a successful leader in Corporate America. But she accepted a harder career path than either, as the mom in our unique family.

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Lessons

Four Holiday Lessons turned New Year’s Resolutions

January 1, 2018 by Paul Van Heest No Comments

We had a wonderful Christmas season this year; I hope you did, too. Like many, I confess that I overindulged, and I find myself thinking today about New Year’s resolutions.

My resolutions fit into four categories. In each case, they derive from something I learned or reconsidered over the past two weeks.

 

Take Care Before Giving Care: Being a full-time caregiver is exhausting. Based both on our own plans and nursing availability, we were on our own with Gabriella more often during the holiday season. This outcome offers pleasure with every appreciative smile, but it takes its toll on us physically. Lifting her and repositioning her in the chair and on the bed results in aches in our backs, but also on our wrists and hands.

With the return to our normal schedule, it’s important to care for ourselves. For me, this means not only setting aside those delicious Christmas cookies and returning to neglected exercise routines, but also looking for little ways to help my amazing partner on this lifelong adventure, my wife Lisa. For us, this is the ultimate team sport.

 

Make Time for Loved Ones: One of the great things about the holidays is the chance to spend time with family. My brothers are spread across the eastern United States, and last year, like most years, it was the only time we had to be together. We also got several opportunities to see good friends.

My new writing-and-blogging schedule enables me to fulfill a lifelong dream, and as an introvert I often enjoy my seclusion. But I will make more effort as well to share time with loved ones.

 

Show Gratitude: The six weeks between Thanksgiving and New Year’s offer an ideal opportunity to express appreciation. Lisa always recognizes the people who contribute to our daughter’s care, from her nurses to her instructors at her program to her bus driver, among many others. Gift-giving is a two-way expression of gratitude.

At the same time, I want to make sure I don’t wait 46 weeks to say Thank You. My nephew Daniel has a unique philosophy: rather than waiting for birthdays or Christmas to give a gift, he buys one whenever he finds something he thinks someone will love, and he gives it right away. He is as excited as the recipient at the prospect of presenting his find, and the gifts themselves are always thoughtful. This year, I’ll strive to adapt Daniel’s philosophy to expressing my gratitude.

 

Seek Out the Wondrous: The Oxford English Dictionary defines “wonder” as a feeling of surprise mingled with admiration, caused by something beautiful, unexpected, unfamiliar or inexplicable. I have been fortunate to find this emotion in many places, from stories to nature to my relationships with family and friends. Often I discover wonder in our life with Gabriella.

Last year I wrote about attending a sensory-friendly performance of Mary Poppins at the Papermill Playhouse. Over the holidays, ten members of the Van Heest family returned to Papermill to see Annie, again in a sensory-friendly environment. We all enjoyed the show, but more so we found a sense of wonder in Gabriella’s joy. She had never seen even a video recording and was unfamiliar with the music, but she clicked and made whoopee-noises throughout. In 2018, I will seek wonder anew, for myself and for our daughter.

 

Time will tell how well I stick to my New Year’s resolutions, but here on January 1st, I am filled with optimism.

What are your New Year’s resolutions?

 

 

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Daily Life

Our Twelve Days of Christmas

December 18, 2017 by Paul Van Heest No Comments

On the first day of Christmas, my Peanut* gave to me

A life lesson in dignity.

* As I wrote about a few weeks ago, at home we call Gabriella the Peanutgirl, or our Peanut.

 

On the second day of Christmas, my Peanut gave to me

Two decades (and three) of love

And a lesson in priorities.

 

On the third day of Christmas, my Peanut gave to me

Three dogs at school

Two meows from Luna

And the aura of pet-therapy.

 

On the fourth day of Christmas, my Peanut gave to me

Four wheelchairs

Three vans with ramps

Two bath-chairs

And a life lesson in adaptability.

 

On the fifth day of Christmas, my Peanut gave to me

Five magical clicks;

Four gifts from strangers

Three spontaneous blessings

Two lucky breaks

And a whiff of divinity.

 

On the sixth day of Christmas, my Peanut gave to me

Six moms event-planning

Five grateful clicks;

Four preschools seen

Three special needs trusts

Two years with Diverse Abilities

And a lesson in advocacy.

 

On the seventh day of Christmas, my Peanut gave to me

Seven months a-blogging

Six stages of grief adding

Five expressive clicks;

Four communion dresses

Three sensory-friendly shows

Two thumbs-up

And a lesson in humility.

 

On the eighth day of Christmas, my Peanut got from me

Eight syringes a-plunging

Seven meds a-taking

Six times transferring

Five echoing clicks;

Four respiratory treatments

A three-part bedtime routine

Two rounds with the toothbrush

And a lesson in constancy.

 

On the ninth day of Christmas, my Peanut gave to me

Nine teachers teaching

Eight aides Halloween-parading

Seven bus drivers loading

Six proms a-weeping

Five welcoming clicks;

Four devoted nurses

Three therapists a week

Two wheelchair techs

And a lesson in camaraderie.

 

On the tenth day of Christmas, my Peanut gave to me

Ten beach wheelchairs rolling

Nine pools a-swimming

Eight zoo-birds a-cheeping

Seven hours driving

Six times Auto-training

Five adventurous clicks;

Forever in motion

Three trips to Disney World

Two nights on a cruise

And a lesson in accessibility.

 

On the eleventh day of Christmas, my Peanut gave to me

Eleven surgeries succeeding

Ten fingers crossing

Nine months’ dreams a-wilting

Eight IV bags dripping

Seven monitors beeping

Six peds nurses caring

Five resilient clicks;

Four respiratory infections

Three stays for seizures

Two lithotripsies

And a lesson in tenacity.

 

On the twelfth day of Christmas, my Peanut shared with me

Television video watching

Leavened with loud laughing

Tender hugs embracing

Nonstop memories flooding

Ate so that I’m bursting

Servin’ creamy icing

Sicknesses avoiding

Favored loving clicks;

Forgetting all your worries

Tree awash in presents

Too few days together

And the essence of family.

 

 

Happy Holidays!

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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’m Thankful this Year

November 20, 2017 by Paul Van Heest 6 Comments

I’m thankful this year because twenty-three years ago, we received a gift, a daughter who was nothing like what we had expected and yet brought us an enduring peace. Without ever speaking a word, she changed our perspective on what was important. She helped us decide where to live and helped us learn how to live. In a time when special effects and virtual reality make the day-to-day seem humdrum, she showed us the true meaning of wonder.

I feel lucky this year to see Gabriella bring unity, during a time of divisiveness and conflict. When she smiles, it’s impossible not to feel joy, no matter how your day is going. When she clicks, it’s impossible not to feel blessed, no matter your faith or beliefs. If everyone knew someone like her, the world would know less strife.

I’m grateful this year that we’ve seen Alexander make great strides in his life, and no less that Gabriella has gone from an unmatched school environment to a day program that keeps improving. Each is fulfilling their destiny; each is making the world around them a little better. Comparing our children brings hazards, but taking pride in each yields only benefits.

I feel blessed this year because she is healthy and has been throughout the last twelve months. Writing her story has brought back hurdles she has overcome, from dehydration to cataracts to club foot surgery. It’s caused me to reflect on our first hours together, to dwell on the dark days after the neurosurgeons removed the tumor from her brain, to relish once more the outcome of our son’s Level II ultrasound. It’s memorialized the lessons I’ve derived from our experiences. And it’s made me appreciate the relative lack of “excitement” this past year.

I’m appreciative this year that Lisa and I have a loving family and friends, many met either directly or indirectly because of our daughter. So, too, the devoted people who help us care for and transport and instruct and entertain our child, who can do so few of those things for herself and still shows each of them her own type of appreciation.

I feel fortunate this year that so many of you take precious time to share our story. As I’ve transitioned from an executive role at a mission-based organization to a life of writing and blogging, I’ve had the privilege to read dozens of wonderful blogs written by parents of unique kids. Experiencing their struggles and joys has left me a better person. I can only hope some who come to this site find a similar encouragement in our journey with Gabriella.

Thank you and Happy Thanksgiving!

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