So I am running in my first race as an adult really soon and this little cutie below is the reason. I can't think of a better way to get my bootie kicked either:) Please visit and read THIS blog - it is SO amazing what this little guy can do from what he was "expected" to do. He has come so far but there is so much more help he needs. I copied the story for you to read below and you can click on the info. and get to the blog from here as well. This is for a great cause (and friend) and anyone who loves to run and lives in Davis County should come join me - we would have a blast!!!
The Reason
In case you are wondering why I am so
passionate, whyI am so persistent,
passionate, whyI am so persistent,
and why am I committing more time
and money than I have to give?
and money than I have to give?
This is why.
“Profoundly Retarded”
Those were the words that would resonate after
the cold and blizzard-like
February morning my life forever changed. No
words of comfort were given;
no meaningful gestures or signs of hope, just
cold-hearted terms and grim
medical statistics.
the cold and blizzard-like
February morning my life forever changed. No
words of comfort were given;
no meaningful gestures or signs of hope, just
cold-hearted terms and grim
medical statistics.
My husband and I were strongly encouraged to
terminate the life of our baby
boy – our boy. We were told his life was going to
end regardless and would
have no quality even if he made it to term.
In fact, we were lead to believe
his life would be a disservice to humanity
and to our families’ lives.
terminate the life of our baby
boy – our boy. We were told his life was going to
end regardless and would
have no quality even if he made it to term.
In fact, we were lead to believe
his life would be a disservice to humanity
and to our families’ lives.
You don’t prepare for something like this.
You can’t. I did not sign up on a
roster sheet and volunteer to have my heart
torn to shreds. Albeit, life happens,
and we get to make choices; choices that
ultimately determine our consequences,
and choices that allow us to learn, grow and
experience worlds we were not aware
existed.
You can’t. I did not sign up on a
roster sheet and volunteer to have my heart
torn to shreds. Albeit, life happens,
and we get to make choices; choices that
ultimately determine our consequences,
and choices that allow us to learn, grow and
experience worlds we were not aware
existed.
Blair and I made a choice in that moment;
a decision of our hearts. We knew without
a doubt that this boy was ours, and we prayed
that we would be able to hold his body
and kiss his cheeks. We didn’t care about
his nose, or cute little funky toes…we just
wanted to be given the opportunity to love
him.
a decision of our hearts. We knew without
a doubt that this boy was ours, and we prayed
that we would be able to hold his body
and kiss his cheeks. We didn’t care about
his nose, or cute little funky toes…we just
wanted to be given the opportunity to love
him.
During the months that followed, test
results were given and we discovered Deakon
had an extremely rare Chromosomal
abnormality, simply titled Ring 18.
Basically,the second chromosome in his
18th pair had broken at the ends and formed
itself in the shape of a circle. Needless to
say, hours upon hours were spent on the Internet;
reaching for any beacon of hope I could find.
During my search, I stumbled across the
website www.chromosome18.org, and read
the following mission statement:
results were given and we discovered Deakon
had an extremely rare Chromosomal
abnormality, simply titled Ring 18.
Basically,the second chromosome in his
18th pair had broken at the ends and formed
itself in the shape of a circle. Needless to
say, hours upon hours were spent on the Internet;
reaching for any beacon of hope I could find.
During my search, I stumbled across the
website www.chromosome18.org, and read
the following mission statement:
Our mission is to help individuals with
chromosome 18 abnormalities
overcome the obstacles they face so they
might lead happy, healthy and
productive lives.
chromosome 18 abnormalities
overcome the obstacles they face so they
might lead happy, healthy and
productive lives.
I don’t remember exactly, but I am nearly
positive I cried. What a difference this
statement was in comparison to the words the
specialists were choosing to use.
Through this website and its’ resources, I
was able to connect with families who had
children with Ring 18 and other chromosome
18 abnormalities. Pieces of my heart
began returning, and hope was beginning
to be restored.
positive I cried. What a difference this
statement was in comparison to the words the
specialists were choosing to use.
Through this website and its’ resources, I
was able to connect with families who had
children with Ring 18 and other chromosome
18 abnormalities. Pieces of my heart
began returning, and hope was beginning
to be restored.
Deakon is now nearly five…FIVE years
old. He is beautiful and happy and sweet
natured. He freely gives kisses and
whispers, “Mama, I la ya (I love you.)”
In fact, rare a morning goes by without me
hearing it. Deak loves music, especially the Black Eyed
Peas, and lives for his favorite TV show,
Yo Gabba Gabba. He crawls around, creates
mischief for his amazing big sister, Abby,
and walks like he has something to prove in
his awesome green walker. In fact, his
physical therapist says it is only a matter of
months before he is walking on his own.
old. He is beautiful and happy and sweet
natured. He freely gives kisses and
whispers, “Mama, I la ya (I love you.)”
In fact, rare a morning goes by without me
hearing it. Deak loves music, especially the Black Eyed
Peas, and lives for his favorite TV show,
Yo Gabba Gabba. He crawls around, creates
mischief for his amazing big sister, Abby,
and walks like he has something to prove in
his awesome green walker. In fact, his
physical therapist says it is only a matter of
months before he is walking on his own.
Deakon’s life is anything but a disservice
to our family, and Deak is anything but
retarded. He is an example of who I wish
I could become.
to our family, and Deak is anything but
retarded. He is an example of who I wish
I could become.
Although Blair and I had made a
choice, I am forever indebted to the Chromosome
18 Registry and Research Society for the
restoration of Hope that was given to my broken
heart. I am so grateful for the positive
attitudes and assertive drive that began medical
and genetic research twenty years ago.
Medical research in an area that is considered
non-commercial and unprofitable; Research
through which my son was advised to
begin medical growth hormone treatment
that has drastically improved his life.
The connections I have made with
families, through the aid of the registry have been
life and sanity saving. They are
family…sealed with a Chromosome 18 gift.
choice, I am forever indebted to the Chromosome
18 Registry and Research Society for the
restoration of Hope that was given to my broken
heart. I am so grateful for the positive
attitudes and assertive drive that began medical
and genetic research twenty years ago.
Medical research in an area that is considered
non-commercial and unprofitable; Research
through which my son was advised to
begin medical growth hormone treatment
that has drastically improved his life.
The connections I have made with
families, through the aid of the registry have been
life and sanity saving. They are
family…sealed with a Chromosome 18 gift.
That is why I am choosing to raise
funds for this charity, and for my son.
Without the families of the affected
children fundraising, we would have nothing.
funds for this charity, and for my son.
Without the families of the affected
children fundraising, we would have nothing.
We are so excited to spread awareness
and earn funds for a cause that is clearly
so dear to our hearts, and appreciate
the opportunity the city is giving us to do so.
and earn funds for a cause that is clearly
so dear to our hearts, and appreciate
the opportunity the city is giving us to do so.
With Love,
Jenny Howe and Family
Click HERE to get to the race info.
