Nearly A Year Later: Birthday Thoughts

A note from Deb on Alexis’s 26^th birthday, 2013:
 

When Alexis was born, a miracle was let loose in the world and whether you met her right away as Lionel and I did, or a bit later on, Alexis worked a change in you. Most of us had never known an individual with the level of disability that Alexis experienced. The list of her impairments was lengthy and shockingly significant to daily living. With her birth, our family was plunged into a world of doctors, educational interventionists, and therapists each delivering a gloomy and frightening prognosis.

 

For a long time, we fretted about what Alexis couldn’t do and feared for the fragile little infant she was before her heart was repaired. She suffered excruciating colic, was limp, sweaty and pale. She failed to thrive, grew thinner and wasted, and was delayed in development.

 

But it wasn’t long before Alexis began showing us who she really was. When she was fitted with hearing aids at the age of six months, she was unable to do little except unreliably hold her head up. At first she didn’t like having something stuffed into her ears. She didn’t like the noise of our chatting and singing and nursery-rhyming, so she would hook her tiny fingers over the hearing aids and pull them out. Sometimes they would land whistling on the floor at home, or in the mall or grocery, or even into the snow mid-blizzard. Sometimes she would tuck them under her or lay them on her highchair tray. In time, she came to love her hearing aids and depend on them.

 

Despite her poor vision and delays, she began to sign at about 7 months. She eventually chose to speak, but sign language continued to help her understand. ‘More’ was her first sign. Throughout her life, Alexis wanted more of everything: more music, more hugs, more crazy antics with Dad, more cheerleading, more reading, more parties and friendships, more art, more yoga, more Barbies, more sleepovers and opportunities to eat, to laugh, and to love.

 

She wanted to be a mermaid, a princess, a hairdresser, a pianist, a Bollywood dancer like Simone, an artist, a witch. For a time, she became obsessed with snowmen and enjoyed being called ‘Alexis Marie.’ She was intrigued by all things dental, including the variety and color of toothpastes and toothbrushes. She loved thinking about and noticing crooked and straight teeth, and startled many by talking about their "pink palate." She feared and loved dentists, orthodonture, and dental chairs. She remained a big fan of Halloween and eagerly assisted everyone in blowing out birthday candles.

 

Whatever opportunity she was given, she plunged right in working hard to read, shred paper, shelve granola bars, to be an altar server at church, to paint what was in her mind’s eye, to learn to ring a bell at just the right moment in order to be in the bell choir at Hope. Improbably, she skied (with support), taught herself to swim, and was masterful with a pair of chopsticks. She learned to knit and shared my love of yarn and creativity, enjoying hours of crafting and knitting. Toward the end of her life, she thoughtfully planned knitted gifts for upcoming birthdays. She was a quick, decisive and insightful shopper and gift giver. She became a very facile computer user and independently explored the internet searching for things of interest to her and taught us about Idina Menzel, as Elphaba, the green witch of ‘Wicked’ who, like Alexis, refused to let her differentness stifle or oppress her. Alexis sent emails to her sisters, family and friends spreading the word about who was sick and which guys Adrienne had been seeing.

 

Alexis was authentic, sincere, naturally innocent, charismatic, enthusiastic and witty. She was a poker-faced jokester, joining in the laughter only when others had caught her joke. From infancy, she loved all music and showed her unadulterated appreciation for musicians, especially street performers and opera singers. The music director and the choir at church were rock stars and she was their lighter-waving groupie, dashing across the church to soak in their final hymn close-up. She admired beauty, bright lipsticks and extravagant hairstyles and tried to copy them – even cutting her own hair. She enjoyed planes, hotels, cruise ships and a good road trip. She relished all food – especially if it was spicy. She savored the margaritas and mojitos her dad made for her and knew how to take her time with a good cabernet. It must also be said that Alexis was extraordinarily fond of brie cheese. She loved eating in restaurants and could read and order from a menu. Alexis was very tidy and polite.

 

Alexis developed compensatory skills to deal with her many challenges and impairments which were so well-honed that many people weren’t aware of the extent of her challenges. Many didn’t realize that she was deaf, for example. Most people didn’t realize that half her visual fields had never developed, resulting in significant visual impairment. She did have an unerring 6^th sense for emotional content and was hyper aware of joy, sadness, tension, fear, anger, and excitement in those around her. She had a marvelous sense of gratitude and thanked us often with real and spontaneous appreciation. The memories of her ‘thank you,’ delivered at precisely the right moment, are precious.

 

Alexis suffered with the effort of living life at the very threshold of her capacity and sometimes became frustrated and angry, especially when despite her best efforts, things went awry. Her moments of fury were tremendous and exhausted her, but she always felt extreme remorse and sorrow afterwards that was harder to witness than her initial outbursts.

 

For all of this and so much more, her life had a big impact on us. Nearly a year after her death, it is still a profound shock that Alexis is gone. That she died in a period of personal achievement and apparent health, at a time which deprived her of the joy of being a bridesmaid for Adrienne, compounded our trauma. In addition to our love for her, what remains is extreme grief for the brevity and challenges of her life and equally profound, gratitude that Alexis’s life was lived among us – that her miracle was ours to witness. Today, on the 26^th anniversary of her birth, we know for certain that we have each become who we are because of Alexis.