This story
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.
Louise Limacher