a different kind of perfect

i'm a mom...on a mission...to enjoy life everyday...appreciate the little moments...try not to get so easily annoyed...raise my kids with a faith legacy that leads them to continue to be amazing people...and to make my husband feel as special as he makes me feel.

What is Cystic Fibrosis?

CF is an inherited chronic disease that affects the lungs and digestive system of about 30k children and adults in the US (70k worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that both clogs the lungs and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. [www.cff.org]

Tuesday, February 7, 2012

65 Roses

I've always loved carnations.  I'm not sure why, maybe because they are more cost effective than other flowers, maybe because they don't have thorns, maybe just because they last longer or just maybe because everyone seemed to just get roses and I just didn't always want to be like everyone else.  I've always thought of flowers as happy things:  as gift of love, of happiness, of appreciation, of congratulations, something to get on Valentine's day.  But there are stories, legends, associations of flowers that don't always bring such a happy image to mind, such as one Christian legend of carnations appearing on earth from Mary’s tear at Jesus’s carrying of the cross or a Korean legend about placing flowers on a young girl to determine when her hardship in life will begin.  The last story I heard about flowers made me tear up, so I'll share, it's called 65 Roses. 

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 asked, "What am I working for, Richard?" He answered, "You are working for 65 Roses." Mary was speechless.  He could not see the tears running down Mary's cheeks as she stammered, "Yes Richard, I'm working for 65 Roses."  [sis'tik fībrō'sis...since then the term "65 Roses" has been used by children of all ages to describe their disease.]

I've been thinking about this a lot lately.  Dean has no idea what he has.  He does not know he has a disease, he does not know why he has to do his treatments first thing when he wakes up.  He has no clue about why those little red and blue capsules have to go down into his belly with his food.  He just does it.  He does it because we tell him to, we sit there with him and he has faith in us that we will do what is right for him.  Of course he doesn't consciously think of this complete trust - he just does.  There are so many times where I wish I could be just like him, just do, just trust, just have complete faith to know that it will all be all right.  I try so hard to trust completely but I think too much, I fail and I need concrete evidence sometimes.  I need to see it, smell it, hear it, feel it.  I have a faith in God that I feel could move mountains, but I so long to just see those mountains move.  Last week, praise God, one of those mountains moved and I was here to see it. 

On Jan 31, 2012, the FDA approved a drug that targets the cause of CF in patients with a certain mutation (G551D), and tries to fix what's going on at the cellular level; it will significantly improve the quality of life of 4% of the US CF population - that's about 1300 people that will benefit from over 10 tireless years of the Cystic Fibrosis Foundation parterning with the developer (Vertex) and providing significant scientific, clinical and financial support (approx $75 million).  I mention the money because I want you all to know that every dollar that you raise or help us raise goes towards funding research and development.  We are so happy for the kids and adults out there that will benefit now from this new drug (Kalydeco).  Cheers to them and their families; to all of the caregivers out there that will see improvements in their health, their loved ones health and the quality of life that they will see increase.  That mountain was moved. To read more about this drug, follow this link

This breakthrough motivates me to raise more money, to do what we can to make sure that the next phase of what is out there now will help Dean. In fact, word is that Dean will be able to benefit from Kalydeco along with another therapy that is in phase two of clinical trials.  Also, some major partnering with Pfizer and the CFF can't hurt in the hunt for a cure for CFers with the mutation that Dean has.  I know it can be done.  I have faith that it will be fixed but faith doesn't just mean sitting back.  It means praying and doing everything that I can.  Doing what we can now means one fundraiser at a time.  I really want this mountain to move so I pray and will continue to tirelessly raise not only our family but as much money as we can with the hopes that Dean won't even have to learn to say "65 Roses" to describe his disease.  I won't hide it from him, but I truly pray that soon, for us, the rose will go back to being just another flower associated with Valentine's Day.

keep up to date with dean:  http://www.eatpraydean.com/
sign up on our 2012 Great Strides team and help find a cure:  http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=7708&idUser=460312

Dean at 22 months