I'm meeting with the city the race is to take place in tomorrow, in an attempt to gain support and advertising. They asked, among other things, that I include a written proposal.
So, I re-formatted a few lines and am including a post I wrote last year while asking for fundraising money for our beloved charity.
So, in case you are wondering why I am so passionate, why I am so persistent, and why am I committing more time and money than I have to give?
This is why.
“Profoundly Retarded”
“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.
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.
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.
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.
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:
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.
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.
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.
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:
Our mission is to help individuals with 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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
I would deeply appreciate any support in advertising the city would be willing to give us. This is the first of what I hope to be an annual event, each weekend closest to my son’s birth. There truly is no better way to celebrate his day, than by providing hope to others.
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.
Thank you,
Jenny Howe and Family
