Psalm 139: 13-16
For you created my inmost being;
you knit me together in my mother's womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful, I know that full well.
My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
your eyes saw my unformed body.
All the days ordained for me were written in your book
before one of them came to be.
Lexi Noelle Valladares was born on April 16, 2004 in Torrance
Lexi began having seizures when she was six weeks old. Although she tried almost every seizure
medicine available, endured the Ketogenic diet, was hospitalized many times,
and had a Vagus Nerve Stimulator implanted, these seizures could never be
controlled. Unfortunately this affected
her development greatly. Fitted with a
customized wheelchair at age three, she was able to attend preschool for two
years and had just completed kindergarten at Willenberg Special Education
School in San Pedro. At age five she
began to lose the ability to swallow and with her low weight a great concern, a
feeding tube was placed in her stomach.
As a result, she gained lots of weight and really thrived, making greater
eye contact and interacting more with the world around her. In February 2010, after nearly six years of
searching, we finally learned that she had a genetic condition called CDKL5, a
condition discovered in 2004 that has about only 200 cases reported worldwide.
Our little lady was indeed special!
Although she never learned to walk, sit up on her own, crawl
or feed herself, she was an amazing little girl with a sweet spirit about her
and people were drawn to her. She said
very few words in her six years with us, but she was always able to communicate
with us. She used her legs and feet a
lot to communicate. She often kicked whatever or whomever was nearby her. She loved to roll around the floor, kicking
whatever was in her path, as she deliberately made her way to her desired
destination. Lexi loved to cuddle with
anyone and also loved to have her feet rubbed.
Lexi delighted in sharing a room with her big sister Chelsea for the
past year and a half. Lexi enjoyed
music, whether at home or at church. Lexi
was a very easy-going, content little lady. She rarely cried or fussed and she
went along wherever we went, joining us in the pool in Palm
Desert , with family in San Diego , at family gatherings, Disneyland, and two trips
to Hawaii
Lexi brought so much to our home. She brought an unexplainable peace and an
everlasting joy. It was the simple
things she did that brought us such joy: smiling when Chelsea tickled her, waving
her little fingers at us, watching her kick the ball over and over again as we
rolled it to her on Christmas morning, or hearing her little squeaks that
earned her the nickname “Pipsqueak” or just “Pip” for short. She was also quite mischievous, often trying
to trip us when we walked by her. One
time, she even destroyed a game that big sis and mom were playing- kicking the
pieces all across the living room floor when we had turned our backs for just
one minute. We were sure she was telling
us that she didn’t like that she wasn’t playing the game. She grew us each in ways that only made us
better- teaching us about ourselves, what it means to be a family and drawing
us closer to God. But more than anything
she brought us love- it is the greatest gift that she gave us and that we could
give her. She taught us what it means to
love unconditionally and with your whole heart.
It was in our moments of solitude with her, while holding her, that the
peace, joy and love all came together as one.
Lexi was very loved by family, relatives, friends and her
doctors. Thank you to all of you who loved our “little lady” Lexi.
