Monday, May 12

65 ROSES....A PEEK INTO MY LIFE WITH CF

TO ALL THE PEOPLE THAT I WORRIED SO MUCH!!
I AM SO SORRY.....I NEVER INTENDED ON HURTING SO MANY
I AM TRULY OVERWHELMED, AS I SIT HERE WITH MY LAPTOP AND (LITERALLY) WEEP AT EVERY THOUGHT OF YOU PRAYING FOR ME

I AM TOTALLY UNWORTHY OF ALL OF THIS LOVE AND WORRY.  BUT AS NOT TO BE  SELF-LOATHING (BECAUSE I WAS WONDERFULLY CREATED BY GOD...I WOULD NEVER WANT TO BE SO UNGRATEFUL FOR MY LIFE), I KNOW THAT MY JESUS IS SO MERCIFUL TO HIS LITTLE DAUGHTER, THAT HE ALLOWS SO MUCH LOVE TO FLOW MY WAY FROM ALL OF YOU

THANK YOU FROM THE BOTTOM OF THE DEEPEST PART OF MY SOUL

HERE'S A LITTLE OF MY STORY AND WHY CF HAS BEEN A BEAUTIFUL FLOWER FROM MY SWEET JESUS:

I was brought up in such a faith-filled Catholic family with such strong and devout parents.  My diagnosis of Cystic Fibrosis came when I was only a year old.  My mom and dad were so strong; to hear that they just needed to take me home and love me b/c I would not be with them for long.....growing up was never scary for me.  Even as our family prayed FERVENTLY for my health (I was always taught to give it to God from day 1), I never really understood my illness, as my parents took on all of that worry and left me to be a kid.....in fact, one day I received a box on my door step filled with long stem roses......65 to be exact!  Wow, who had sent these to me?  They were actually sent to me from the CF Foundation.  Why.....Well, CF is a childhood illness, and most of the patients cannot even pronounce it's complicated name.  Kids often times refer to their illness as "65 Roses" as that is what the term, "Cystic Fibrosis" sounds like.
My mom and dad took amazing care of my health....leaving nothing to chance, while making sure that my life was as normal as possible.  My folks chose to keep my illness as private as they could, so that I would not be treated any different from any other kid.  For that choice, I am truly thankful to them!!

Well, all of you know how the end of that story worked out (I did not die as a child, but instead grew up to be the happy wife of a truly godly man and the mommy of 4 amazing children)  BUT when I think of my mom and dad (me as a mom now) just worrying so much for their precious child's life, it gives me such profound perspective of what they went through for me.  They were so strong and faithful through it all.  With that said...ask anyone in my family, and they will agree that my diagnosis has been the SINGLE MOST BEAUTIFUL blessing that has ever been bestowed on any of us.

If you ask my sweet Jeremy, he will tell you the same thing.  I remember the evening that Jeremy and I sat in his car (in front of my dorm at TCU)  I knew that I needed to share my illness with him, not knowing how he would receive it.  We were in love and we talked of marriage.  He had to know this knowledge of me before committing to me for life.  For my cross would become OUR cross.  Jeremy actually remembers this moment so vividly.  He listened as I explained myself.  I agreed to totally understand if this was too much for him to take and that he should not feel guilty if he wanted to take a step back.  Today, each time I apologize to Jeremy for all of this pain and suffering I've caused him, he reminds me of that evening so many years ago......He says that in that moment, he fell in love with me all over again, seeing how vulnerable I was and he felt so absolutely certain without a doubt, that he loved me no matter what and wanted to be the one to take care of me forever.  
(I am an ordinary girl.....but I am in love with an extraordinary boy) In our 21 years together
(I can hardly believe that we have been together since we were 18 years old)

We have been through so much with my health.  Daily therapies, infections, hospital stays, home IVs, seeking out doctors, seeking out treatments, tears, prayer, lots of pills, lots of bills, etc....the list goes on and on.

We are stronger in faith today and more in love than ever.  Our family has benefitted so greatly from this cross. Our kids have worries that other kids do not, but Our Lord knows that this is so beneficial for their souls.  As a family, we take nothing for granted!!  Our little ones realize the true benefits of suffering.  How we can offer them up as special prayers for others.....how they strengthen us in character and ALWAYS  lead us closer to our Lord.

I feel closest to Him in my difficult times.  He has given me so many gifts through this, but this gift also comes with a great responsibility.  What do I need to do with it.....I pray that I will be a true example of grace when it comes to my sufferings (which is not always the case).  I pray that I will be a true example of gratefulness to my Jesus for all that He has blessed me with.  We praise Him in EVERYTHING!!

"The Lord Giveth, the Lord Taketh away.....Blessed be the name of the Lord"
I love you my dear Lord Jesus, You are my life's Delight.....You are my Everything...You are my Every Breath

UPDATE
APRIL 13, 2015
(These beautiful roses 65 of them....just like the ones that I received when I was little, were brought to me in the hospital by my dear friend, Celeste when I was sick)

I JUST found this picture of my beautiful bouquet of roses today (I had lost this image somewhere on my computer)
I am adding it to this old blog post just today......from last year..... Almost 1 year to the day that my dear sweet Madison had to bravely call 911 for me.  She was SO AFRAID....Oh, Jesus, you have brought me so far
Even though it has been a almost a year since I was admitted to St. Pauls and put on a ventilator, the tears stream down my face right now as I think of last spring.  I try not to think about it (which is impossible because I am so thankful each and every day).  I am still so grateful for every prayer that was offered.....Those prayers are what truly healed my horrible infection

Our Lord Jesus worked through SO MANY people to save me
Thank you to all of our friends and friends of friends and families of friends and people who knew people who knew our friends and just those kind souls who heard about my special intention....the prayers for me health spread out further than I could have ever imagined possible
I am not worthy, but so grateful to so many

Jesus, You are truly my every Breath....be with me