In Honor of Deak...

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

*My apolgies to those of you who are recieving a paper copy as well:)

What Budget?

It's a well known fact of those who love me:

I spend money when I'm worried/stressed...okay and maybe just happy.

It's not good.

Not insane amounts of it (as if I have insane amounts to spend), but large enough to do some damage.

Today, I just realized I've spent my entire two weeks budget for gas/groceries/diapers etc (you know ones' typical basic necessities) and I still have a good 8 days left.

Crap. Yes, I've been especially stressed...but, crap.

Apparently, the new fake diamond studded flip/flops from Target, New Moon and Princess and the Frog DVD's, Gap clothes, Micheal Buble' Cd, dining out expenses and gummy bear runs have taken a toll on the old checking account.

(Sorry Blair)

Hindsight says I should have possibly thrown in MLB Season ticket or something to please the husband and lesson the residual blow.

On a positive note...I could be shooting up smack or something...that would be way worse.

Sure hope my family enjoys Fruit Loops and canned Chili.

Hey - at least we can watch shirtless Jacob while we starve.

Four Days.

I'm going to be real honest.
I was not feeling it in church last Sunday.
At all.
So much so, that at one point during Sunday School I may or may not have muttered, "Oh Hell...not again" in reference to a comment I had heard repeated too many times to count.
I sat near the back row, reading Lost Theories on my iPhone and counting the minutes until I could get home and have a diet coke.
The class ended and my sister (who was staying the week with me) and I headed to Relief Society; happy to have made it through to the last hour, and somewhat hopeful I would allow myself an opportunity to worship he for whom I had gotten dressed and driven to church for.

The lesson began, and was introduced as the story of Hannah in the Bible.
*I'm going to be real honest again.
I haven't read it (The Bible).
Most of it.
With the exception of the Gospels for a spell in college while I went to Institute with a group of boys I wanted to impress.
Oh, and Luke at Christmastime.
My little family began reading a children's version of the Bible together each Sunday this year, and I have sat and listened intently as my Husband reads them aloud...hearing most of these stories for the first time in my adult life.

The story of Hannah (briefly synopsised) is one of a woman who desperately prays for her Heavenly Father to grant her a child, and is willing to sacrifice her child to the Lord at the age of three...knowing that by doing so, he will be serving God.

Several women relayed correlations to the sacrifice mothers make when their sons choose to leave for two years and serve a mission for the church.
My heart swelled and I was touched...as if this lesson had been written for me...even on a day I didn't particularly want to hear it. Funny how things usually work that way.

I had four days of experiencing Deakon before we knew our Deakon was going to be the Deakon we know now.
Four days spent dreaming of Jordan Shoes and Football Jerseys.
Four days spent dreaming of sitting on sidelines of sporting events, and bouncing Jazz stats off one another.
Four days spent dreaming of a gorgeous blond and blue-eyed boy deflecting numerous phone calls from girls, because truly...his mother was the only one for him:)
Four days spent wondering if I would be strong enough to allow my son an opportunity to serve the Church we believed in, should he choose to...when the time came.

I remember very clearly telling Blair, "I don't want him to go on a mission. I couldn't bear it." Blair's response being, "Jenny...he's not born yet. You have 19 years." (Psshh to rational thinking...)

Four days to buy crib bedding with footballs.

Four days to place several Internet orders through Gymboree and Gap: Jammies with cars and baseball bats..."Mommy's Little Slugger" one said. Boxes my heart could not open until the day before his birth.

Ten seconds on the phone with my Doctor who was unsure of what, but knew something wasn't right...ten seconds for the life of this very alive and beautiful boy I had spent four days dreaming about, to disappear.

Those next few weeks were spent in fervent prayer; a phrase which I did not fully comprehend until I was involved in it. I made promise upon promise...most of which I have done terrible at keeping. I would have sacrificed nearly anything to be able to hold this baby boy I had grown to love so deeply.

Much like Hannah...

I sat on my bed the other night, watched the new episode of Gabba, and held my precious boy. He curled his head into my chest and cuddled. I watched him drink out of his sippy cup with car pictures, wearing a pair of Nike basketball shorts and Kobe sneakers...and felt at peace. Those dreams I had for those four days have all come true. The grief I've felt at the loss of experiencing a world with a "traditional" son is beginning to dissipate.

I Have My Son.

Something I promised I would never take for granted. Something I willingly sacrificed my silly superficial dreams for. Those four days I often look back upon as one of those places in life one knows they can never get back.

But, for once...I think I am finally okay with that.

Little Bits of Happy.

Happiness requires effort.

It just does.

If you expect it to be given out in massive doses once you master a set of skills or accomplishments, you will be left with nothing but disappointment and resent.

I am trying to be better at this...the whole "work" for happiness thing. Lucky for me (said without sarcasm), I have been given opportunities in my life, in the most recent weeks and of course years, which have allowed me glimpses of understanding into this philosophy/choice. I get to choose to look at these pieces of my day and simmer them together to become a full steaming stew of happy.

Lately my stew has included...

*Deak has invented a dance (if you wanna call it that) where he hits himself in the head once, claps his hands a few times, and then uses both hands to pat his belly repeatedly...like a Gorilla. It is absolutely hysterical. He will begin on cue, at any impromptu time...all anyone needs to say is "Head" and he takes it as his starting signal. This past Friday night while eating at Zuppas, a darling little thing toddled herself over to Deak's highchair. He gave her his classic sideways eye glance and then softly touched her cheek.

Then...he busted out his dance routine, without cue from Blair or I.

She actually was quite impressed and came back for round two.

This boy is a Lady Killer.

*Ab goes against the grain...in most aspects of her life (except her hair and clothes, which have to be perfect). She began a love for China when her class celebrated Chinese New Year a few weeks back, and it has turned into an obsession. She would only root for anyone of Asian descent while watching the Olympics, and will only cheer for the young Asian fellow on American Idol. We have attempted to explain to her that China is Communist country where children obey their parents (interesting phenomenon), but she refuses to believe us. In fact, this morning while getting ready to go to school she said, "I wish I lived in China. They don't have to go to school." I was met with a look of disdain and a classic eye roll when I tried to tell her about the school schedule in China.

Blair and I have told her if we hear anything more about China she will be required to eat Chinese food (which she doesn't do much of at the moment).

I have to admit that I've found myself looking for Chinese items (which isn't difficult considering everything is made there) etc...anything to make her smile.

My Ab sure is full of it...but, that spirit is what I love most.
(At least she is moving to China now, and not to Switzerland where she could marry a woman and adopt a baby...I was a little thrown off by that one...(Boys have "cooties" in second grade, don't you know?)).

*Fake snowboarding on the Wii makes me feel as if I can be an Olympian, and I love it. I don't have to wear a coat, buy equipment, or fall off the ski lift. It is the perfect winter Olympic sport for me... Cheers to fake snowboarding.

*Eye cream...I have high hopes my new eye cream will make me look ten years younger, and ten pounds thinner. I am sure of it. If it doesn't, no need to tell me...I am sure my evil Wii Fit will.

*Kyle Korver's recent increase in minutes for the Jazz. So much irrational pleasure is derived from him doing well. Really. I get nervous and jittery while he's on the court and live each three point shot as if it is his last.

*Watching my kids irritate the heck out of one another. The joy I feel when I watch them relate and love each other as typical siblings do is really and truly immeasurable. Goose eggs, bites, and screams are all things I did not know I would ever get to experience. I do get to though...and I am so eternally grateful.

*CRAWLING...still not over it. I know; it's been a while now...but, I don't care. I Love It!!!


*Alone time with Ab as I run and she bikes alongside me. She chatters the entire way and takes my mind off the hurt. It is perfect.
....and I could go on...
Choosing to be happy is awesome.
Life is awesome.