Ten fingers and ten toes, she had them all. I counted them several times. From what I had been told, if you could count all twenty then your child had passed the first test of being a perfect baby. With a perfect little angel in our presence, the day had finally come for us to begin teaching her everything we wanted her to know. Holly had big plans for Tavi to dance, play the piano and be her riding partner at Disneyland. I couldn't wait to have a little golfing buddy and finally have a reason to act like a kid again at the beach, building sand castles and digging for sand crabs. What a relief it was to finally have a child of our own that was born healthy and strong.
It was now November of 2005. Five months had passed since the moment Tavi was welcomed into this world. Her fingers were so perfect and long that there was no doubt she was destined to be a great piano player and that they would benefit her greatly while gripping a golf club. With our prized possession strapped in her pink car seat we headed to her pediatrician for a checkup, where we were certain the doctor was going to stroke our egos and agree with us that she was at the top of the charts and well on her way to physical greatness. That day, Tavi's pediatrician didn't tell us exactly what we wanted to hear, but nonetheless, all would be well. Just a recommendation to see a neurologist. Tavi was our first child so as far as we knew, this was pretty common. We would take her to the neurologist and then get back to our normal lives of talking about what age she could begin dance and I would get back on Ebay to continue my search for a set of golf clubs for an infant.
The first doctor referral turned into another one and that began a snowball effect that seemed to never end. At nine months of age Tavi's neurologist told us that he believed she had Spinal Muscular Atrophy (SMA) despite her blood tests all coming back normal. “You can expect her to live until she's about two years of age." I'll never forget those words, just as I'll never forget the car ride home from his office in San Diego that seemed to last an eternity. Looking into the rear view mirror during that unforgettable drive at our very own princess, we couldn't bring ourselves to believe the doctor's words were true. It wasn't a big deal if she couldn't bare much weight on her legs or roll over. She just needs a little more time we thought to ourselves, and this whole SMA thing was just his opinion, not a proven fact.
Time passed, but experiencing watching Tavi roll over had yet to occur. Instead we found our- selves doing all we could to help Tavi cope with hospital stays, endure countless tests and listen to negative physical reports from doctor after doctor. Bad news became the norm and seemed to be never ending.
Tavi's second birthday was extraordinary. It took place under a canopy of trees on the front lawn outside of a small rehabilitation hospital thirty miles from our home. Tavi had some recent new accessories at her party which was her reason for this hospital stay, namely a g-tube for feeding and a tracheostomy and a ventilator for breathing. Her muscles had become weak, and aside from no longer being able to eat or breathe on her own, she could no longer speak the few words she had once learned to verbally communicate.
We were half way through what would be a four month hospital stay. Though dance shoes
and golf clubs were scratched off Tavi's birthday gift wish list, it didn't matter. The only
thing that mattered was that we were celebrating Tavi's second birthday, and she was
wearing a breathtaking and contagious smile that will forever be imprinted in our memories.
While I have many fond memories of what we learned together as a family during this
particular hospital stay, learning a new form of communication with Tavi is my favorite one.
Due to her mouth and throat muscles weakening over time, she was losing the ability to
further her skills with any verbal communication. Primarily practicing with choosing which
book to read, Tavi would raise her eyebrows for yes and close her eyes for no. The ability
to communicate with Tavi solely through facial expressions would prove invaluable over the
years not only for making fun decisions in choosing activities Tavi wanted or outfits to
wear, but helping us to do our best to keep her comfortable and happy through all that she
Holly and I spent 24/7 with Tavi in the hospital until we finally brought her home. While we grew to genuinely enjoy our extended stay in that small hospital room, taking turns sleeping next to Tavi's ventilator on a blow up mattress, we were elated to bring her home. With her new accessories came new routines that required meticulous care. Life had officially changed in ways we never imagined. Traveling as a family was no longer an option, not unless it was within a thirty minute drive, and even then we were putting Tavi at risk. We no longer went on our daily walks with just a simple diaper bag as any departure from the home required at a minimum of a suction machine, ambu bag, ventilator, emergency tracheostomy kit, suction catheters and oxygen tank. No more white Christmases at the grandparents or Lake Powell trips, or even simple gatherings with friends or family during flu season or if ever there were rumors of illness.
While Tavi's needs changed the way we live our lives in ways we never imagined, each change has blessed our lives and given us more happiness then we could have ever fathomed. I've witnessed my wife willingly and happily alter her daily routine from a day that once consisted of her wants and needs, into that which is best for Tavi. Tennis with friends was given up for the extended time that was now required in order to get Tavi ready each morning, just as many girls nights out were replaced with a time consuming bedtime routine. Personal TV shows were replaced with additional story time for Tavi and downtime due to a play group or public school has never existed so that Holly could take a much needed nap or enjoy regular personal time. Despite exhaustion and limited personal time, I never heard her even hint that she wished she had more time for herself. The only time of day I wasn't able to witness my heroic wife reading Tavi countless books, or gently hold crayons in Tavi's soft hands as she guided her every stroke in a coloring book, was when Tavi took a short nap in the afternoon. My precious wife spent Tavi's nap time proactively following up with doctors, ordering supplies, correcting pharmacy orders, dealing with insurance and then cooking and cleaning. During each hour that Tavi was awake, it was Holly's passion to spend that time doing exactly what Tavi loved the most, which was spending one on one time with Mom. She didn't consider it a task or service or even a Mother's obligation. The pure intent behind her sincere actions evolved into the most sincere form of true charity
I have ever witnessed in my life. Witnessing such a rare and beautiful display of selfless love between a mother and daughter is infectious and has inspired me to strive to be a better father and husband.
I vividly remember one particular meeting that Holly and I attended at the school boards office in 2008. Sitting at the end of a long conference table we were surrounded by ten education professionals and the topic was Tavi Cook's future and whether or not she had the ability to progress cognitively and deserved further spending by the school district for education. While a few of the ten were on our side, the head decision maker was not. From across the table this individual emphatically stated that in her professional opinion children like Tavi do not have the ability to advance cognitively and any additional funds used to allow school teachers and therapists to work with Tavi would be poor use of the districts funds. My heart sunk deep into my chest. Bewildered, I glanced over at my wife expecting to see her equally devastated with the wind blown out of her sail. Instead I witnessed the most beautiful and emotional display of faith, hope, love and determination that I had ever seen. Rising up out of her chair, my timid wife held nothing back as she relayed her undeniable beliefs which were backed with pure conviction. There was no doubt in her mind that Tavi had the ability to learn and advance and not only could she continually progress, but she could even keep up with children her own age if given the opportunity. With a room filled with a mother's near perfect love, she was able to sway the jury and allow one more round of funding to see if Holly's intuitions about Tavi were in fact correct. Weekly in home therapy and 5 hours per week of in home school with a school teacher who was nothing shy of an angel fit for Tavi would continue.
In January of 2011 Tavi became the first person in Southern California to qualify for a state of the art communication device through CCS. Qualifying for this was the result of a two year battle with all those creating road blocks for the funding needed for such devices. In the middle of a thirty day trial Tavi demonstrated two distinct abilities which most professionals didn't ever expect her to be able to accomplish in months or even years, if at all, and she had done them before her thirty day trial was even complete. The patience, endurance and unwavering focus which Tavi had developed over the years while housed in a body with great limitations rewarded her greatly when it came time to operate a device that required an unusually high tolerance for all three of these attributes. With a small camera like device on the bottom of Tavi's tablet computer which was mounted on a mobile stand that could be precisely lined up with her eyes, the computer could calibrate with Tavi's pupils and know what she was looking at with exact precision. Using only her eyes Tavi could navigate the computer going to and from the home page, choosing books or games or favorite video clips. To mimic a click of a mouse Tavi would stare at her desired icon and leave the cursor on that icon for 1.5 seconds. This method allowed Tavi to navigate the computer, go from page to page on her favorite books, demonstrate to all those around her the intelligence which her mother spoke of for years by matching numbers, letters, colors, objects and places. She could build snowmen by passing a series of questions and play games like itsy bitsy spider and no more monkeys jumping on the bed. For the first time in her life she could choose by herself that which her heart desired, without having to wait for mom or dad to present her with choices of activities or books they had picked out for her. Most importantly
she was able to communicate as she clicked on icons that relayed her desires. “Read me a book please.” "I'm tired." "Mom," "Dad," "I love you." Words can't express the feelings felt every time we heard these phrases. Word spread quickly that Tavi was making progress on her computer at an astonishing rate. The manufacturer back east requested that Tavi be one of their poster children for their company. Doctors and educators who once doubted Tavi's abilities were now sharing her success story with their departments, colleagues and families they were working with that had children with similar conditions to Tavi.
On March 30th, 2012 we took Tavi into the hospital due to an abnormal heart
rate we noticed as we had always monitored her vitals 24/7. We also noticed
her skin was more pale and cool to the touch than normal. When we arrived at
the hospital and went through Tavi's history with the doctors they were
astounded that a child who's on a ventilator with a tracheostomy had not been
in the hospital even once since she received her tracheostomy and vent nearly
five years ago. To them, it was unheard of to have never contracted a
respiratory or tracheostomy infection or at the very least, even the flu or a
cold that didn't require a hospital visit for a child with such a sensitive
respiratory system. While the doctors were stunned, I was able to look across
the hospital room at my beautiful wife and know that her constant care and
nurture for our sweet daughter, coupled with countless prayers and blessing
from above were the very reasons for which Tavi had been blessed with five
years of health. While those healthy five years still required countless doctor
visits, studies and tests to try and diagnose Tavi as SMA was eventually ruled
out, and far too many blood lab visits, she was able to accomplish something
each night which we thanked God for each and every day. She slept in our home,
under our roof, which meant we had spent another miraculous day together as
a family. Nothing could have brought more happiness into our lives during those
five years, then the blessing of being able to spend time together in the comfort
of our own home, searching for butterflies while on walks and reading books late into the night.
The changes we noticed in Tavi on March 30th were due to her heart working in overtime. Her cardiologists told us that the changes were serious. This would not be the first time we had been told that a miracle would need to take place in order for Tavi to make it back home, and we were confident that a fine mixture of Tavi's inner strength and our family and friends prayers could make that miracle happen within her heart. Despite our deepest desire to bring her home, Tavi and God had something else in store. After exhausting literally every fiber to its fullest in the frail body she was born into, Tavi returned to the presence of her Father in Heaven on April 10th, 2012.
How naive we were nearly seven years ago when Tavi was born and we were counting her fingers and toes. We were right about her being perfect, we just had no idea just how perfect she was, and none of the reasons for which she is perfect had anything to do with the us being able to count to twenty.
~ Brad Cook, Tavi's proud Daddy
Event Photos courtesy of Sandi Gentry
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Tavi's Fairy Festival is a non-profit annual event that raises funds for women's and children's charities.