by Miriam Bernard

Alice Sheehy, 16-year-old music lover and creative spirit with ACC, has had a lifelong tactile sensitivity that has made her averse to wearing bracelets or certain types of jewelry. When we recently interviewed Alice’s grandmother, Cathie Pike, in honor of Grandparents’ Day, Cathie shared one of the many ways Alice is an overcomer: Last month, Alice fulfilled the dream of seeing her favorite pop star, Taylor Swift, and decided she could not pass up on the opportunity to wear THE accessory of all Taylor Swift fans: an arm-full of beaded friendship bracelets. Alice bravely crafted, brought and wore some 80 bracelets to attend the concert, as her grandmother and family nodded along at how this conquering of one of Alice’s sensitivities was just one more way she has surprised them with her abilities, interests, intelligence, and brave spirit these last 16 years.

Meeta Ahluwalia once said, “Grandparents enjoy most the company of their grandchildren. For with them, they experience the joy of being 10 again.” As we spoke with Cathie in this special Grandparents’ Day interview, it was immediately obvious that the bond Alice and Cathie share is incredibly special, and has allowed Cathie to re-experience the many joys of childhood, alongside the occasional challenges that accompany neuro-divergence. To ensure Alice feels connected and loved while at her boarding school in Massachusetts, Cathie, or “Grancie Pike” as Alice refers to her, sends a special letter to Alice to open every Friday. This means every single week, Alice, a huge lover of reading, receives a new letter from her Grancie – sometimes with photos and other times with other special enclosures. As Cathie states, “This is a chance for Alice to know she is thought of and loved.” A testament to Cathie’s commitment to help her granddaughter feel at all times cared for and treasured.

Cathie and Alice’s parents became aware of her ACC diagnosis when Alice turned three years old. Their understandable first reaction was surprise, but that emotion was quickly followed by a strong resolve. Cathie stated that the family unanimously decided, “We’ll expose her to every single thing we can give her opportunities to do. Some she’ll gravitate toward, some she won’t, but we’ll move mountains so she will be able to live as close to a typical life as possible.” Cathie then added, “This girl, every day she’s a miracle to us.“  At the age of three, Alice went to a creative arts therapist, who has remained in Alice’s life ever since. Cathie recalled, “[The therapist] instantly told us, ‘Alice has talent and you’re going to watch wonderful things in myriad ways that she will be able to do.’” Cathie has seen that declaration come true over and over through Alice’s love of dance, love of myriad genres of reading, writing, museums, art, and so many other aspects of art and creativity.

Cathie and Alice share several interests and therefore enjoy many activities together. One is Floral arranging – Cathie shares that Alice has a talent for this, and states, “I’ve taught her flower arranging, and she is a beautiful flower arranger. We she visits, we arrange together at church for the Sunday service, and when she decides her design, and when she decides, ‘That’s enough of those flowers in that bucket; we’re not going to do anymore. This is the design. That’s it. She has her own beautiful picture.”

One more love Alice and Cathie share is for reading and writing. Cathie is herself a poet, and recently found herself with the opportunity to write an interactive poem as she and Alice were in New York. Cathie gave simple prompts such as “Why?”, “Where?” and “When?” but let Alice’s creativity flow while she was the scribe. The result is a lovely piece of literature partnership between a grandmother and her beloved granddaughter. Before we share the poem, we leave you with this beautiful sentiment Cathie shared when asked about what it’s like to have a granddaughter with ACC: “It makes you a more beautiful person on the inside, because everybody is different, and you can find and enjoy the differences in people, in children, in ways of doing things, and you learn to really enjoy the ability to make someone happy. Alice is a happy child, but I’m sure it’s because the sunshine goes to her, and the sunshine comes back from her…. We used to give her all the love, but now she’s giving us all the love.”

A Grandmother/Granddaughter Poem: Sidewalks, Roads, and Pathways

This is a togetherness poem.  This summer, Alice and I were walking down Broadway and saw another hair tie – the elastic band for hair – brown, black, white, and colors etc.  (In the last months I have seen them everywhere.) I remarked about it in New York and the next day we wrote a poem.  We decided on the title, then I prompted Alice saying, “Where, why, and then what happened?”  Her ideas were vivid and my only sentence was “Oh no!”. It was a fun creation for us.

Without further ado, here is the poem “Sidewalks, Roads, and Pathways” written together by Alice Sheehy and her “Grancie Pike” in June 2023:

Sidewalks, Roads, and Pathways

Walking down Broadway

There was a Hair Tie dancing

On its way to see

“Chicago.”

Now was the right time

To see the show.

All went well until

A gust of wind

Carried it away.

It felt surprised and enjoyed the happy ride

On the wind.

But after that it went into a heating vent.

Oh no!

Then it floated around until

It got sucked up

By the vacuum in an office building.

It felt very scared.

The End

Alice Sheehy and Grancie Pike

June 23, 2023