June 2, 2000 - July 19, 2015

 

The dash between Halle Grace's birth and her death signifies so much.  That simple little line, "-" speaks volumes in 15 short years, more with this girl than for most people who have lived on this earth for decades.  Halle was born five weeks early, she came into this world so quickly, that she earned the nickname 'Comet.'  Within days we knew there was more to Halle than just being born a few weeks early.  She was far sicker and far weaker than the doctors had expected.  We soon discovered Halle was born with a rare chromosome deletion, 18Q-.  We were told she may never be able to eat, may never walk, may never talk, and would most likely be cognitively delayed. 

 

We soon also realized that Halle was a fighter, and she took great joy, even from an early age, in proving the professionals wrong. She required a feeding tube off and on for a number of years. But she learned to eat!  In fact, she developed a love for fine cuisine and was always open to trying new foods and visiting new restaurants.  She was also known to dabble in the kitchen, as she spent many of her teen years mixing spices and developing new sauces and recipes. 

 

Halle also learned to walk, but not only did she walk, but she also learned to run and insisted she could do a 5K race at the age of 7.  It took her 54 minutes, but she finished it!  And she made the newspapers too.  After the article came out, she asked in her sweet second-grade voice, "Mom, can you send a copy of that article to the doctors who said I would never be able to do anything!"

 

Halle not only ran, but she also danced!  Halle LOVED music and she LOVED to get her groove on. Even as a toddler, she would cut up the dance floor! I remember at a work function at the Florida Aquarium one year, Halle must have only been three or four and she was out on the center of the dance floor getting the party started. Before you knew it the crowd was around her cheering her on. She knew how to bring joy to a room. As a person with no rhythm and two left feet, I admired Halle for her ability to just feel the music and do what she loved. Whether it was at a sleepover, at a church service or at home on a difficult day, Halle would crank up her tunes and get those feet moving and take herself to a more joyous place. One of Halle’s biggest fears was that she would be forgotten, but I truly believe she will ALWAYS be remembered for her DANCING!

 

They also said Halle would never talk.  She was a quiet girl, who was not one to talk your ear off or tell you everything that happened in her day.  But when she had something to say, it was well thought out and articulate.  She was almost always positive and encouraging and never spoke ill of anyone - except maybe when talking about her little brother and sister.   I do remember watching one doctor's head spin when Halle was just three and about to go in for surgery.  Halle was snuggled with her Hello Kitty doll and he asked her "Now Halle, does your kitty have any allergies?"  Her soft, sweet voice responded, "Yes! To Reglan, Phenergan, Zithromax and Versed."  We all got a good laugh out of that one.

 

While the doctors also told us to be prepared for the numerous delays Halle would face, they expected the most extreme would be in regards to her cognition.  Boy were they wrong.  Halle not only had an above average IQ, but she had a true love for learning.  Halle was a sponge – she absorbed everything around her! She had the most amazing memory – it really blew my mind. Around our house, it became common to say “Halle remind me later to….” Fill in the blank. That memory …that mind…absorbed everything around her. She loved everything related to social studies. From states and capitals to WWII. The civil rights movement. The Holocaust and women's rights. She read books on every topic that interested her. She was truly an ole soul.

 

Halle Grace far exceeded many of those early prognoses given to her, but it didn't mean her life was like that of her friends.  In contrast, it was far from that.  Halle spent her first two years in and out of the hospital.  She was diagnosed with primary immune deficiency at the age of 2.  She had sensory integration disorder, her hands were disabled, and she had motor planning issues. She had 15 hours of therapy a week, OT, PT, Speech, Feeding, and Aquatic Therapy.  She had more than 40 surgeries and procedures, had 10 specialists, hundreds of doctors' appointments, required monthly infusions and took tons of medications daily.  By the age of 11, Halle's body began to attack its autonomic nervous system.  She could no longer properly regulate her body temperature, blood pressure and sometimes breathing.  Over the course of the next four years, Halle's body continued to shut down.  She could no longer process food properly; she was in extreme pain throughout her body on a daily basis.  By 2014, she was diagnosed with a severe case of polyneuropathy.  There were no drugs that could stifle the pain. 

 

But she was relentless, by then she knew her days on this Earth were limited.  In August, she had emergency surgery to fix a g-tube malfunction on the very day she was to start her freshman year of high school.  She talked the doctors in to discharging her early and she left her hospital bed and was able to go straight to the third day of school.  She made a bucket list in her head and chose to live to fulfill some of those dreams. She chose to live for us, the family she loved. She chose to endure relentless pain that was far beyond anything any of us could have imagined. She chose to not tell us how bad things were so she could stand in the student section for an entire high school football game and so she could go to homecoming dance with friends. She chose to read the classics. She chose to travel the world at Epcot! She chose life – the life she was given. That didn’t mean she wasn’t struggling. She grieved for the life she would never have, and she grieved for the little time she had left on this earth. She grieved at the thought of saying goodbye to us all. But she kept her head up and kept on moving - just like she had done her entire life. In fact, she danced through the pain. She celebrated life with music, dance, love and joy. On her weakest days, Halle cried to God and begged for him to take her “home.” On her stronger days, she found a distraction that would keep her mind off the relentless assault her body was taking as it continued to shut down.

 

We had no idea how much pain this sweet girl was enduring until she entered hospice. The high levels of Dilaudid and Ativan she was on would put anyone else into a coma, but for Halle, she still writhed in pain. Those last two weeks, we did everything and anything to keep Halle’s mind off her pain as we showered her with the love and comfort of family and friends. We played family games, had visitors, drank Starbucks’ frappuccinos, watched movies, listened to music, and danced around her room. Those last two weeks were a gift from Halle. She worried about us rather than her own fate. She loved on us and focused on her future in heaven without pain and suffering. She bravely said goodbye to each one of us.

 

Her only fear was that she would be forgotten. She feared we would not say her name again.  I promised her that would never happen.  You see, Halle taught me so much in her brief 15 years.  In her "dash."  In fact, she wanted to be a teacher when she grew up, so we are allowing her to scratch one more thing off her bucket list, as we grow this Foundation in her name.  It is our hope that Halle's life, what she endured, how she dealt with it, in essence, her "dash" will teach others.  We hope medical professionals will learn a little something about pediatric chronic illness from hearing her story.  We hope to teach families that they are not alone - perhaps maybe they can learn something from what we have gone through and hope they feel our support through some of the work we do. And it is our hope Halle Grace will continue to inspire young people, whether they face medical challenges or not, to live their life to the fullest.  To find joy in life despite any ups or downs.  And may Halle teach us all to face life with a smile on your face and a dance in your step. 

 

Halle you left us a legacy of empathy, compassion, joy, friendship, courage, bravery and most of all love.  May we continue to follow your lead and do you proud. May we keep your legacy alive through The Halle Grace Foundation.