The Beginning
On September 8, 2004 I made my grand entrance into this world. My parents were so glad to
see me and count my ten little fingers and ten little toes, all was well. I went home as
scheduled and began my life with my family. Things were good, I was gaining weight and
eating well. Around three months my weight began to slow down and I began to take longer
and longer to finish my bottles. My doctor began focusing on my weight issue, but
everything else seemed fine.
My mom couldn’t get over how soft my cry was and how quiet my sneezes were. She thought I
was just a really easy going, quiet baby. But little did she know, these were just the
smaller signs of something bigger. She began to notice how little I moved my arms and
legs. Compared to my friend Abbie, who was only two months older than me, I moved my limbs
very little. Not to mention, I couldn’t raise my head while laying on my stomach, even
at four months! My mom mentioned her concerns to my doctor, but he quickly dismissed
them as her being " a first time mom" who was overly paranoid.
Around four and a half months, she told my doctor once more she was concerned about my
low muscle tone and lack of movement, only to receive the speech he had been giving. She
then decided to get a second opinion.
We then met with a second doctor who agreed something wasn’t right, and I was scheduled
to see a neurologist the next week. We went to Children’s Hospital in Birmingham,
Alabama in late February and met with several people before finally seeing a neurologist
by the name of Tony McGrath. He did his examination and asked my mommy and daddy a lot
of questions and with each answer they gave he would nod his head, as if they were
confirming his thoughts. He asked if my parents had done any research before the
appointment and of course my daddy had, but mommy didn’t want to know anything until
talking to the doctor. Dr. McGrath then started talking about some diseases that they had
never heard of and mentioned something called Werdnig-Hoffmann disease, also know as
Spinal Muscular Atrophy. Mommy didn’t know what he was talking about and asked what
it was, but before she could finish she looked up at daddy, and he began to cry. She
knew then, that it wasn’t good. She still continued to ask what could be done to help
make me better, but was told nothing. That very second, everything stopped. Mommy
really doesn’t remember much, just crying , begging God not to take her daughter,
and hearing that I would not live to see my first birthday. Thank God mommy and
daddy had support from family that had insisted they come along for the appointment.
We had blood work done and would know the results in two long weeks. As we all sat
waiting to have my blood test, mommy was still crying when a woman came up and
said "I don’t know you but I feel moved to pray with you for your child." That
really meant a lot to my parents, and that was just the beginning of hundreds
of people who would be doing the same from that day forward. Daddy stayed strong
and went back with me to have the blood work done. This is something mommy never
likes to do. Mommy and daddy drove all the way home, without speaking a word. When
we arrived home, it was as if someone had just died. People began to come by and
offer their support and prayed with us. I went home with my honey that night, because
mommy didn’t want me to see her so upset and crying so much.
We spent the next two weeks visiting several churches and doing a lot of praying. I
loved all of the attention I was getting. People we knew and didn’t know were praying
for me and visiting me everyday. Mommy spent a lot of time rocking me and listening
to a really pretty song by Martina McBride called "God’s will". The two weeks were up
on a Friday, but they didn’t have the results so that meant one more long weekend of
not knowing. That Friday night mommy and daddy were watching Fox 6 News health special
and there it was, our answer. They were covering a piece on Spinal Muscular Atrophy.
Mommy said she knew then, that was God letting her know so she wouldn’t have to wonder
all weekend again. We all made yet another trip to Children’s that following Tuesday
to meet with Dr. McGrath. You could have heard a pin drop as we walked back to the
examining room and every nurse was just softly smiling and looking at us. When Dr.
McGrath came into the room he leaned against the wall and held a piece of paper in
front of him that was shaking. He then said " Well, the results were positive." He began
to tear up and told us that he did in fact have the results on Friday, but couldn’t
meet with us. He went on to say it was one of the longest and hardest weekends for
him. Mommy and daddy were very strong this time. God had prepared them, and all
of the prayers they had received made them ready to fight. They told the doctor
they understood the information he had given us was from a medical stand point,
but they were standing on the word of God, and believed that I would be healed.
Right then and there, mommy and daddy began to fight for me by asking what's next?
They were determined to explore all options in finding the best way to care for
me and give me the best quality of life.
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