Dear Family and Friends,
The Chromosome 18 Registry and Research Society holds an annual fundraiser entitled, “The Phantom Tea party.” It’s premise being as that we might take one day out of a year, in honor of our loved one affected with a Chromosome 18 abnormality, and choose to pass on an act or service or give a donation. It is a phantom party because it does not require fancy clothes and attendance, just a simple moment to pause. I’ve hesitated the past few years to participate in this fundraiser; certainly not because I do not believe whole-heartily in its’ importance, but because I empathize with our individual family struggles to get by daily. I’ve hated to ask you to sacrifice any more than you already are. This year, being as that my instincts tend to overpower my rational thought, I’ve decided to give it a try and hopefully give an opportunity for this wonderful organization to fund some more research. Research that has undeniablally changed my life.
“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 it 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 syndrome. 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.
Although I don’t remember exactly, 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 Syndrome and other chromosome 18 abnormalities. Pieces of my heart began returning, and hope was beginning to be restored.
Deakon is now nearly four…FOUR 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.
He is a light of pure joy in my day. Watching him develop and grow, overcome his challenges, and work his cute little bum off has been the most amazing experience of my life. His will pushes me to work harder, prioritize better and love more effectively every single day.
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 my heart has not let this go this year. I understand that many of you will not be able to donate money, and please understand that is okay. My hope is that we may turn a simple thought or act of kindness to another individual on this day, and perhaps even allow a thought or prayer to be said for the families and research association that have changed my life for the better.
That being said, please join us in spirit, to celebrate the lives of these amazing people living with Chromosome 18 abnormalities:
Date: Saturday May 15th, Deakon’s fourth birthday
Hour: Anytime that suits you
RSVP: As you can, with a prayer or check. Donations are tax-deductible, and receipts will be mailed to you.
Please make checks payable to:
The Chromosome 18 Registry and Research Society
Mail to our Home: 931 South View Crest Lane
Kaysville, Utah 84037
Please visit www.chromosome18.org for more information.
With love,
Jenny, Blair, Abby and especially…Deakon
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 it 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 syndrome. 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.
Although I don’t remember exactly, 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 Syndrome and other chromosome 18 abnormalities. Pieces of my heart began returning, and hope was beginning to be restored.
Deakon is now nearly four…FOUR 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.
He is a light of pure joy in my day. Watching him develop and grow, overcome his challenges, and work his cute little bum off has been the most amazing experience of my life. His will pushes me to work harder, prioritize better and love more effectively every single day.
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 my heart has not let this go this year. I understand that many of you will not be able to donate money, and please understand that is okay. My hope is that we may turn a simple thought or act of kindness to another individual on this day, and perhaps even allow a thought or prayer to be said for the families and research association that have changed my life for the better.
That being said, please join us in spirit, to celebrate the lives of these amazing people living with Chromosome 18 abnormalities:
Date: Saturday May 15th, Deakon’s fourth birthday
Hour: Anytime that suits you
RSVP: As you can, with a prayer or check. Donations are tax-deductible, and receipts will be mailed to you.
Please make checks payable to:
The Chromosome 18 Registry and Research Society
Mail to our Home: 931 South View Crest Lane
Kaysville, Utah 84037
Please visit www.chromosome18.org for more information.
With love,
Jenny, Blair, Abby and especially…Deakon
*My apolgies to those of you who are recieving a paper copy as well:)
8 comments:
I don't know how you couldn't donate after reading your blog!! I'm happy you have an extended family that you can relate to and are bonded with. I hate asking for money too, so I'm proud of you for putting it out there!
Love it Jen. He is such a special boy and I hope everyone can see it!!
I love the phantom tea party. (Totally foreign concept for my mom, but I'm game)As usual very well written post. I just had a feeling to check my google reader before turning in for the night.:)
RSVP: Wishing I could be there in person to celebrate not only Deakon's birthday but the celebration of the lives of those wonderful miracles living with Chromosome 18. Always a prayer and a donation is on the way. As always, you have touched my heart. Love to you! Aunt Donna
I've never heard of it, but I think it's a great idea - I still can't believe he is turning 4!! That went by way too fast!!
We felt the exact same way when we stumbled across the chromosome18.org website. We will forever be indebted to them, as well as always hold a special place in our hearts for all of them and the hard work they continually put forth for our children!
hey Jenny
we both commented on C18's blog the other day and I've been meaning since then to read your story here.
what a gorgeous family you clearly are and I applaud you for your strength and honesty in the things you've shared here.
have a great day.
Sara x
Jenny you are such an eloquent writer. I couldn't help but let the tears flow as I read this. I will dedicate May 15th in honor of Deak! You are an amazing and strong woman and Deak is lucky to have you and vice-versa!
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