Team FaithFULL
Dedicated to the awareness & search for a
CURE to CYSTIC FIBROSIS:
a chronic, progressive & life-threatening genetic disease.
The Story of 65 Roses
65 Roses® is what some children with CF call their disease because the words are much easier for them to pronounce. Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation in 1965 after learning that her three little boys had CF. Her duty was to call every civic club, social and service organization seeking financial support for CF research.
Mary's 4-year old son, Richard, listened closely to his mother as she made each call. After several calls, Richard came into the room and told his Mom, "I know what you are working for." Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis. With some trepidation, Mary posed the question, "What am I working for, Richard?" "You are working for 65 Roses," he answered so sweetly. Mary was speechless. She went over to him and tenderly pressed his body to hers. He could not see the tears running down Mary's cheeks as she stammered, "Yes Richard, I'm working for 65 Roses."
Since 1965, the term "65 Roses" has been used by children of all ages to describe their disease. But, making it easier to say, does not make CF any easier to live with. The "65 Roses" story has captured the hearts and emotions of all who have heard it. The rose, appropriately the ancient symbol of love, has become a symbol of the Cystic Fibrosis Foundation.
"65 Roses® " is a registered trademark of the Cystic Fibrosis Foundation.
The Special Mother
by Erma Bombeck
a few by social pressure and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how these mothers are chosen?
Somehow I visualize God hovering over Earth
Selecting his instruments for propagation with great care and deliberation.
As he observes, he instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew."
"Forrest, Marjorie, daughter. Patron Saint, Celia."
"Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
Finally he passes a name to an angel and smiles. "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter?
That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.
Once the shock and resentment wear off she'll handle it."
"I watched her today.
She has that sense of self and independence so rare and so necessary in a mother.
You see, the child I'm going to give her has a world of it's own.
She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time, she will be witness to a miracle and know it.
I will permit her to see clearly the things I see--ignorance, cruelty,
prejudice--and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life
Because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles.
"A mirror will suffice."
Ode to Precious Little Faith
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One year ago you arrived on this day~
So little & perfect in just every way…
We’ll never forget that wonderful day~
When God blessed us by sending you our way…
A wonderful new family came to be~
Morgan, Stephanie & Baby Girl made three…
You captured our hearts so very easily~
How happy & excited, but worried were we…
In the NICU, Faith Marie you were named~
Nearby your side your new parents remained…
Neither your Mom nor your Dad wanted to roam~
And we all thanked God that soon you were home…
Diagnosed with CF, we all grew quite tearful~
But having you here makes us all so cheerful…
Team “Faith-Full” came to be when you were two months old~
Helping find a cure for CF before you grow old…
The next few months how time did fly~
Sleeping through the night with hardly a cry…
Over the summer double pneumonia you survived~
And with special treatment you began to thrive…
First you were rolling over, then crawling away~
Doing “360’s” in your own special way…
Who could have known what a delight & joy you would be~
At six months of age, we took you to
Then came Halloween when you were a “ladybug”~
Such a little cutie we all wanted to hug…
Next came your first Christmas with Santa and all~
Opening brand new toys, you had a ball!...
Dear sweet Faith I want you to know~
How lucky you are that your parents love you so…
It seems like just yesterday you were tiny & new~
When God helped you pick the perfect parents to care for you…
So loving & patient & calm as can be~
You have a very special Mom named Stephanie…
Giving you medicine to help you breathe just right~
Whatever it takes to help you sleep through the night…
Your Daddy is Morgan who works hard all day through~
So Mommy can stay home & take good care of you…
Daddy plays with you as your Mommy cooks~
Or she cleans & puts together special scrapbooks…
Your CF we’ll conquer some day we do know~
In the meantime, we’ll enjoy watching you grow…
Now you’re clapping & waving & learning to “sign”~
Thank God you are happy & doing just fine…
Now you can tell us that you are “ONE”~
Each special moment we have you is so much fun…
You’re almost ready to walk & talk, too~
Dancing, reading & playing peek-a-boo…
So picture perfect with your sweet toothy smile~
We all want you here for a very long while…
Knowing that God will watch over you~
While you’re playing, sleeping, whatever you do…
My precious grandchild as you continue to grow~
I want you to know how we all love you so…
I treasure each moment I share with you…
And we look forward to next year when you turn TWO!
~Written by Grammy Marie
Struggle is Necessary for the
Butterfly to Survive
Before a butterfly can emerge out of it's
chrysalis it has to go through a lot of struggling.
Yes, struggling. Each time it lunges out to
escape, acids are being removed from its wings.
If someone were to come along and break the
chrysalis open for it then the butterfly would die
from those acids. In essence the struggle is
necessary for the butterfly to survive. Then in
the stillness, when the struggle is over, the
butterfly can come out and share its beauty with
the world.
We as humans are not any different. There are
times that we need to struggle, to rid ourselves
of the acids that make up sadness, fear, and
anger. It is only at this time when we are
exhausted and still that we begin to hear the
Universe whisper to us.
~Tony Masiello, 2006
"Welcome to Holland
By Emily Perl Kingsley, 1987. All rights reserved.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to
"
But there's been a change in the flight plan. They've landed in
But everyone you know is busy coming and going from
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to
Our sweet baby girl, Faith, has Cystic Fibrosis. This site has been created in order to welcome the spread of awareness of this horrible disease & to serve the CF Foundation in hopes of a nearby cure. You will also find updates about Faith, CF news & local CF events for the Sacramento area. Through significant effort by all, Team FaithFULL raised over $18,000 last year between the Walk & our Race Car event in September (which we WILL have again in ’08)! A special thank you to everyone who helped us not only reach, but also exceed our original goal AGAIN! This year our team goal will start at $12,000 with hopes of again surpassing it! You can make a difference by simply making a donation & sharing this info with just *one* person, but we’d LOVE to have you JOIN our team, too! In 2007, we had over 50 people walk on our team at the capitol! Click the buttons above to donate &/or join us! Please watch Faith's 2008 video above & know that this fund-raiser will be helping to extend the health & life of Faith & 30,000 others battling CF. We are still losing precious lives to CF every day! *ABOUT Faith:* How do you respond to a question like that from a 2.5 year old?...I’ll tell you that on days when I’m literally laying on her with most my weight so she can have 5 vials of blood drawn to check how her body is coping with CF, things surely don’t seem to feel OK. Sadly, those times are only minimal compared to what she may go through someday soon….for every time she gets sick, she walks the tight rope of possibly needing hospitalization and IV’s to get through the infection. Donations are used efficiently and effectively toward supporting research & specialized care that improves the quality of life for those with CF. And, it's tax-deductible.
We look forward to sharing our family, team FaithFULL news & precious memories with you for years to come! Feel free to explore the site, it is a work in progress. You can even leave a message in the guestbook!
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Dearest 2008 Team FaithFULL & Friends~
It’s 2008 & Faith would like to invite you to become one of her Heroes by joining Team FaithFULL as we begin our team’s 4th year at the *Cystic Fibrosis Foundation's Great Strides Walk* in Sacramento on Saturday,
May 3!
As Faith’s mom, CF advocate, volunteer & team leader, my objective is to reach out to as many people as possible, starting with you. As a team member, you are asked to raise money by encouraging your friends, family & business associates to contribute to a worthy cause. You can tell people that their 100% tax-deductable donations will be well spent towards investment in vital CF programs to support research, care & education.
Faith turned 3 in March & after an initial shy period is adored by most everyone she meets. She loves books, puzzles, balloons, fake tattoos, coloring, & painting. Her favorite characters are Cinderella (along with any princess), Barbie & Shrek. She is quite the gum connoisseur, giving her opinion on different flavors such as, “Mmmm, juicy,” or “Yucky,” or “Too spicy!” The movies she could watch everyday are Polar Express, Barbie Ballerina & lately, her parents’ wedding video, hahaha! Faith absolutely loves to eat crab legs in butter (good for high calories), vegetables & of course, candy. She is such a smarty & asks quite the inquisitive questions like, “How do you make the car stop?” “What’s inside your head?” & the amazing out-of-the blue “Will the world be ok?”
In this past year, Faith has been on antibiotics 3 or 4 times because an illness has taken her little body too long to overcome; fairly typical in CFers. She had recurring sinus congestion for over 3 months, which almost put her in the hospital just before Christmas & yet another illness in January, again pushing the line of hospitalization. That sinus issue also caused her to lack an appetite & she began dropping drastically down the weight chart (it is important for her health to stay above the 50th percentile for weight as research has shown a direct correlation between lung function & weight).
We are truly blessed & grateful to have such a wonderfully caring & proactive CF team of doctors & nurses at Sutter who help to keep her in the best shape. Their efforts combined with those of mommy & daddy are what’s brought her back up to great health in February! Faith just had her 3 month check up with the CF team & is doing fantastic! Her lungs are clear, her weight is up & all her blood & throat culture labs are about perfect. Faith has always done a great job taking her enzymes with food & is now up to about 22 pills per day. She also does a breathing treatment & thumping vest (“bump bumps”) for close to an hour daily as prevention which helps clear & break up any mucus in her lungs. We are fully aware that her health can decline rapidly, which changes everything in a matter of days.
*ABOUT the walk:*
GREAT STRIDES is the Cystic Fibrosis (CF) Foundation's largest & most successful national fund-raising event. This year, it will be held at the *
Making a donation is easy & secure! Just click on the link above & it will be credited to our team. Or you can give me cash or check (payable to Cystic Fibrosis Foundation) & I can donate it at the walk site. *Any amount is greatly appreciated!* If you need any ideas for fundraising on your own, I’ve got a gazillion or if you are unable to donate, please come walk with us anyway!
Once again, thank you for supporting our family & the mission of the CF Foundation!
Stephanie @-->----
Proud mommy to Faith, almost 3yrs w/ Cystic Fibrosis & Brooke, 1 year w/o CF
Copyright . Stephanie. All rights reserved.
