Lexi's Legacy

Psychologists define peak experiences as transcendental moments of pure joy and elation. I have been fortunate to experience peak moments often in my life. However, there are a few that have forever changed my life and fortified my character. Lexi, my daughter brought many peak moments to my life. Each moment I was blessed to have Lexi in my daily life through the challenges that her extraordinary condition brought as well as the usual episodes of babyhood and toddler years. She was beautiful, strong and tenacious. At times Lexi gave the impression she was fragile. Although those who had the gift of knowing her quickly learned she would never have survived four and a half years and thrived as she did, if she were delicate.

 

Her birth was once of those peak moments that far outweighed my fear of having a child diagnosed with Semi-Lobar Holopresencephaly. Simply put, her brain, specifically her frontal lobe was partially fused. The odds of this occurring are about one in 70,000. January 14, 2000 at 8:00 am, The Year of the Dragon with Apgar scores of 9 and 10, Lexi came into the world. She barely lived past the first day of life when she stopped breathing after the nurse had bathed her. We later found out her severe nasal narrowing constricted and cut off her airflow when she cried during her first bath. She wasn’t expected to leave the NICU but she did in 14 days. Not only was she a survivor, she was an extraordinary force.

She loved the water whether it was swimming or a bath. She loved to swing and have the wind tickle her cheeks. I loved watching the look of peace on her face as she swung. She would get excited being around other children. She relaxed with the notes of Enya or Nora Jones and jammed out in a gleeful posture with Linkin Park. She defied doctors and adversaries with no need for a g-tube. She even had her favorite table foods bananas, whipped cream and speghetti. She constantly survived her seizures, progressed developmentally at home and at preschool. She was learning to communicate with adaptive technology. She was also learning to walk with adaptive equipment.

 

Her beautiful big blue eyes revealed she was a wise soul beyond her years. I often stared into them and was empowered to accomplish anything. Her wavy long brown hair outlined her stubborn character. Her strong lungs communicated appropriately when she enjoyed something and when she was clearly fed up with a given situation. These factors helped tell her story. She was very loved and had work to leave an impression beyond while she was here. Everyone loved Lexi, some were frightened, and many were in awe. She was a magnet of great force and drew those around her, family and friends to move the mountains she couldn’t physically move for herself. She has left a lasting imprint with everyone she came in contact with.

 

Just after her third birthday, Lexi and I were sharing some alone time. She was in our leather recliner and she was surrounded by tons of fluffy and cuddly stuffed animals. She was freshly bathed and dressed. It was early in the day. She was too precious for words so I broke out the camera. I wanted to make this moment historical, it was a good day. I was talking to Lexi as I was snapping away. She was tracking me with her big blue eyes and seemed entertained with my silly animations. We caught each other’s gaze and locked eyes. Just at that moment I saw her biggest and first smile.

 

It still is one of the most beautiful things I have ever seen. I was beyond elated and snapped the camera like a frenzied woman. When the camera was quickly set aside we enjoyed one of the best cuddle sessions ever! What a moment!

 

I must tell the next story for you to comprehend the special symbol that Lexi brings me in the form of a butterfly. At 4 ½ Lexi left us physically. At her Celebration of Life while Martina McBride’s song was playing, “She’s a Butterfly”, a magnificent, enormous and bold yellow butterfly gracefully flew down the isle of family, doctors and friends that came to honor her life. As the butterfly came towards the front of the ceremony it darted to the left and flew multiple circles around me overhead. Then it slowly fluttered up to the urn, where Lexi’s ashes were surrounded by multiple blooming bouquets. I kept blinking to see if I was dreaming. I looked at my own mother next to me whose mouth was drawn open. I knew this was real. After the rabbi spoke, many people commented on our loss, how lucky Lexi was and how she was amazing, sending the butterfly to show she was still present. Even twelve years later people that were in attendance still comment on the anniversary of her passing, what an incredible experience it was to witness that butterfly message. During her short life she defied the odds and met many milestones. That was her journey. She also picked me for her mom to teach me my journey. Today and every day forward she is with me.

 

She still craftily presents reminders, usually in the form of a graceful, vibrant, yellow oversized butterfly, when I am headed on the right path. She has a way of making her spirit known at the most challenging times. She also reminds me it is my responsibility to honor her legacy daily.