contains all the joys and heartaches that automatically come with raising a
family. It is as unique as every family is unique. As complicated, and as
simple as life can be for each of us.
I want to dedicate this story to "Granny" Mildred who has dedicated her life to keeping three sisters and two brothers together, after the loss of their Mom.
In January 1999, I received the phone call no parent ever wants to get. "Your daughter has been in an accident and we don't think she'll make it!" Carla, Mom to Ashley, Brittney, Calianne, Robert, and Sammy was rushed from the auto accident site to the emergency center ---Code Red! A week later we sent helium balloons with messages from the three girls ages six, four, and three to Mom in Heaven the boys twenty-two months and nine months of age were too little to understand. (as if any of us really understood)
Carla called Thanksgiving Day 1996 to wish me a Happy Thanksgiving only to call a few hours later to tell me she and Brittney were being transported via helicopter to Phoenix for a medical emergency. The Tonto-Basin Indian Hospital did not know what was wrong or how to treat this sixteen month old baby that couldn't "catch" her breath, couldn't hold down any food or liquid and seemed to be in terrible pain. I got on the next flight out to Phoenix and met them at the Good Samaritan Children's Hospital. In the meantime "Granny" Mildred kept Ashley and Calianne, while their Dad and his Dad (Poppa) drove the three and half hour drive.
Brittney was "wired" in every way possible IV, heart monitor, dialysis, etc. The doctors were baffled. Twenty-four hours later she was taken off dialysis as "no change" could be detected. Eight months of tests, hospital stays, more helicopter rides, and many tears Brittney was diagnosed with Cystinosis. What is Cystinosis??? Finally a "name" to attach to all these symptoms that were playing havoc with our frail little girl.
At the same time Robert was receiving medical attention for swelling of the "lining" of his brain. The "pressure" was relieved after a long surgery and over one hundred staples. They went from ear to ear, at the base of his skull, to be removed several weeks later and was given a clean "bill of health". A few months later, his growth came to a sudden stop, the desire to constantly drink, the frequent urination and the happy little guy always fussing well, you know the prognosis.
Now we know the pattern and the routine and we have a test we can check the others to make sure there is no sign of Cystinosis!!! Sammy was the baby plump, pleasant seemed to be "healthy" BUT no color, no desire to crawl or move about, soon to have a Bard-g-tube just like his brother and sister.
The abundance of challenges is only balanced by the love and joy of "one day at a time". Dad (Gene), works long hours as a welder/mechanic in their rural community. While Poppa and Granny "take-on" the kids in the arena of running a ranch. The kitchen is always "open" as Mildred keeps the ranch-hands fed. She never fails in the task of every six hour meds, times three! Bob(Poppa) spends early morning hours on the phone brokering heavy equipment and then does whatever is necessary to keep things going. From being the "medical-taxi" driver to Flagstaff for the geneticist, to Phoenix for the nephrologist, to helping neighbors get their projects done his energy seems endless. "Hats off" to Bob and Mildred for their strength and their positive attitude. Gene and the children are blessed to be on the receiving end of their love.
Ashley, now nine, with only a slim glance at childhood, has taken on the role of "protector", always on the lookout for her sisters and brothers. She is a big help to Granny, continually trying to fill the empty shoes of Mom. Brittney, seven, dealing with the daily ritual of Cystinosis, working hard to catch-up with her younger sister. Calianne, tall for the age of five, started school with an excitement that she now has her own place to shine. Robert and Sammy four and three, are enrolled in a speech therapy class, run circles around everyone and mimic the WWF with passion.
Many lives are miraculously touched by these special five. Friends of friends include them in their prayers and call to check on how things are going.
Our emotions are fueled daily with the constant reminder of mortality. The memories are bittersweet of holding babies that really were so fragile a hug could break them, and then of a smile produced by an accomplishment of conquering tasks, that most of us take "for granted".
I am Grandma Louise, ("Gaweez" in the language of Robert and Sammy), wife of Grandpa Don. We help, visit, and give moral support weekly by phone and as often as possible in person. We shed tears of sadness for the loss of a daughter, and tears of joy for the blessings in our lives. We share our story with whoever will listen and pray for a cure.