Part 2 In one moment everything changed.. Or did it???

Everything was changing so fast.. For months I stood still as everything swirled around me... I wept and wept and wept some more.... I was grieving the son I had lost.... I already had his whole life dreamed up in my mind... and now in one moment one breath someone has striped that all away... This new path only leaves me wondering; would my son live a normal life, would he marry, will he have children, will he suffer, and most heart breaking of them all - will he out live me... This is NOT my plan, my dream, or my path....

Or was it???

For the last 363 days now God had gently held my spirit... and piece by piece over the last year he has shown me the puzzle of my life.... All the moments in my life that he was preparing me, all the moments that I knew I was going through for a reason, only I didn't know why.... As God continued to show me piece by piece there was no question at all, that he has been preparing me my whole life for this very moment and every moment to come.... My path has not been derailed, just the idea of what I thought my life was, when in reality my life has a much bigger purpose than I would have ever been able to dream up... And though it is easy to fear the future I need not worry, because God has promised me in,

Isaiah 43:2 "When you pass through the waters, I will be with you; and through the rivers, they shall not overflow you. When you walk through the fire, you shall not be burned, nor shall the flame scorch you. "

I have lost allot in the last year, but everything I lost was tangible, money, cars, money, job, money, (I think you get the point)..... But I have gained everything that mattered... a deeper connection with God as he nurtured me spiritually & emotionally. Realizing that God really is in charge of everything, including Lane... A deeper love for my children (if that is possible), and greater appreciation for each of there individual gifts and talents.... A much stronger bond with my husband... In fact I have fallen in love with him all over again... and am able to appreciate much more, his hard work and the dedication he has for us.... He is my better half... I gained the realization that for many years I was putting all my efforts or too much of my efforts into all the wrong things... and this year has taught me that I need to prioritize what really is important to me.... My Faith, My Family, Our Friends...... I have learned that I can hold on to things of this world so tightly all the while strangling the things most important to me - My husband and children..... I have learned to appreciate the littlest of things, rainbows, noise, a wave, puddles, sledding, swimming, silence, laughter, lightening, tears, the sun, a touch, swinging, a smile, listening, fishing, hope, and the greatest of all LOVE....

So my dreams may have changed, but God has been walking with me down the same path my whole life, he has sat with me, prayed with me, protected me, held me, provided for me, and he is planning for me... He has prepared me to be right here right now and I just have to allow him to continually mold me into what he desires for me, and keep faith that it is so much more than what I could have ever dreamed of...

In one moment everything changed... or did it???

Okay this is the week.... Week number 52... 52 weeks ago on February 13th, 2009 I drove home from the hospital where we just completed a slew of testing, and as I drove I was trying to figure out the nurses facial expression... I remember her saying that she cannot tell me anything and that I should probably give my doctor a call..... I actually asked her "should I call him today or wait until Monday" really I was just trying to get a clue out of her.... She knew... and I knew she knew... She just put a smile on her face and said "I would call him today"... So as I drive I am thinking out loud, hmmmm does that mean I will have a good weekend if I call today, and she is just wanting me to not stress over it anymore, or does she know its bad and as a mom herself knows I need to know... hmmmm back and forth the mind wonders... and then there is the theory that No news is Good news... Ugggg my cell phone died, so I cannot call anyone, so my mind just keeps wondering.... I continue to drive home battling my own fears.... - should I call before I go back to work or after I go to work hmmmm... Your whole life you go through situations where you worry about the worst happening, and sometimes get yourself all worked up only to realize you made a situation all drama'd out for nothing..... but this time it really did feel different, all the pieces fit, and in the back of my mind I already knew, but I was protecting myself from the reality of what no one wants to hear..... So on my thirty minute drive I just kept trying to decide when and where and how I would receive the news.... maybe I shouldn't call I really have allot of work to get done today.... and I really want to enjoy this weekend.. and I really don't want to hear want they might say, so okay maybe I will just go to work.... but uhhh I really need to call today and if I am at work when I find out that would be bad - right... really uncomfortable to be upset in front of others.... oh what to do... okay go in and let Lane finish his nuggets and get ready for work... okay just one thing at a time.... Okay we can do that.... I go in the house and grag the phone to let everyone know I am back and there it was..... on the caller ID.... my doctors phone number... ugggg..... my heart sank, that was it... no since in guessing anymore... Doctors never ever ever call this fast with good news, or no news.... sigh....... Well the decision was made no putting off the unavoidable.... gotta face it now, no work, no weekend.... Just news.....



I tried to remain silent as I call the doctors office back, I wanted to keep my composure (honestly who really cares), but at that moment I felt I had to not have a melt down, had to be strong... (which by the way was one of the first things I had to throw out the window, my pride, and trying to do it in my own strength.. God's loves my tears :) ) I am numb..... but I call, and yep they tried calling my work, and my dead cell phone, and my house... yep not so good news ahead.... and they were waiting for my return call... Never a good sign right... but of course I am still trying to talk myself out of it... but our wonderful doctor gets on, and he really doesn't have to say much, I already knew.. But he did his best to offer some consoling words.... Which by the way I actually felt bad for him at that point, I never realized before how hard it is for doctors to be the bearer of bad news.....

Okay now what??? I didn't know what to do... Call my husband, not call my husband.... Not that I didn't want to tell him or feel his comfort... but that I wanted him to enjoy just a little longer the feeling of no worries.... Life as it was.... No fears...... and I knew the moment I called, he would come rushing home to feel just as helpless as me....

This one moment in time changed everything, our path took a hard right.... Or did it???

The following week we sat in front of a man in a white coat listening attentively as he explained to us that the life we once knew is no longer and that our new life will require us to dig deep and gain from what ever source necessary to take on the fight.... Lane's Fight.... He sugar coated nothing, yet gracefully (if that is possible in this type of situation) went on to explain that Lane's fight will require allot of medication, future hospitalizations, and a future lung transplant.... He went on to describe the affects of this terrible disease including damage to his pancreas, and liver..... He laid upon us the need for courage, dedication, understanding, commitment, positivity, HOPE for a cure, and most importantly FAITH... It has never been more clear than at this very moment, that this journey we cannot take alone... and I am so glad we haven't... God has now comforted me the last 362 days, and it has been amazing to witness what wonderful things he has done to not only my spirit but that of my husband as well....

I really felt my life had taken a hard right, and dumped me into the completely unknown.... Or did it??

To be Continued -

IS HE CHOKING? GREAT NEWS....

Great News!!!!!



So today was the first time I think we really worried someone by Lane's coughing... The last few days he has been having some coughing fits. We had to got to a few Dr. visits in OKC and stopped off at McDs for lunch... He sounded terrible and several times today people were staring at us wishing they could come up with enough courage to say "TAKE YOUR SICK KID HOME". Seeing the cloud of worry take over their faces, I tried to reassure each of them: No worries, he is not contagious and does NOT HAVE THE SWINE FLU, or whooping cough, bronchitis or any other cough producing contagious illness.... He just has CF no worries.... It is amazing how they take a sigh of relief, and quickly engage in conversation.... There life has been spared... Like I said, this was our first experience with this situation (previously, before diagnosis I probably thought he was contagious, and kept him home) and it really was amazing how uncomfortable it made people feel, and I am sure more so because of the swine flu.....



Anyways back to my GREAT NEWS!!! In Mc Ds, Lane starts have a serious coughing fit, and people just kinda started starring, some I am sure out of concern and some out of fear of infection.... This kind older Lady says afterwards "was he choking?" . Which by the way I thought was the best thing she could have said. I think she was concerned for him, but her little 3 year old grand daughter as well.... Of course she did not want her little one sick with some crazy illness she caught from some little boy whose mother doesn't have enough sense to keep him home away from the rest of the population.... Of course she didn't say that, but really all of us mothers think that... *keep your sick kids home* Right.... So anyways, I really think she said the perfect thing..... Was he choking? Which showed her concern as well as opened the door for me to say oh no he has the swine flu..... Just kidding.... So I express to her, no he is not choking, and that I know he sounds really bad, and most people would be concerned he was contagious but that he is not he just has CF....



She says, "really, hmm my grand daughter is a carrier"

This totally took me back since most people don't even know they are a carrier.. so of course I asked further... How do you know she is a carrier of CF?



Ding Ding Ding....

NEWBORN SCREENING!!!



Here is the great news everyone....



We live in Oklahoma, and Lane missed the screening by less than a year, leading to him being misdiagnosed for four years...

So here this little girl (thanks to the state mandated newborn screening) knows she is a carrier.... This is the first time I have personally had someone tell me that in Oklahoma... so YEA to STATE MANDATED SCREENING..... WHOOT...

This is what treatments have looked like the last two weeks... Kindergarten is wearing him out!!! But he's LOVIN it.....

Our Son!!!

February 17, 2009 - Tuesday
Our Son...
Current mood: confident
Category: Life

Our youngest son has always suffered from respiratory illnesses, andhad been treated in the past for asthma and allergies. Recently ourbabysitter Miss Amanda, discussed some of her observations with us andwe decided to consult our family doctor to go over our concerns. Ourdoctor immediately lined up a few days worth of testing, and uponcompleting all the tests, on Friday our son was diagnosed with CysticFibrosis. To say the least this was a very heartbreaking diagnosis.Thank God for our parents, siblings as well as other family members andfriends, which have been extremely supportive in many ways as we figureout the best ways to help our son. Having there support makes a hugedifference and we are truly grateful for everything they have done. Welove you all... We are also extremely grateful for Miss Amanda. It isvital to a patient with Cystic Fibrosis to receive early treatment, hadit not been for Miss Amanda, our son would have continued to go withouttreatment which could be life threatening. She has played a huge rolein our sons future. We are truly blessed to have her.... I am alsoblessed to have an awesome family doctor, who listened to me, who notonly acted quickly to line up all the testing he felt necessary, butalso when he received the results, made every effort to find me (I wasstill driving home from the hospital) to give me the results as soon aspossible and offer to come and discuss them with me in person. I amblessed to have a doctor that displays such compassion and concern...In a day where hectic schedules keep us all running crazy, this manmust have called more than seven times just during my drive home, andquickly called in more prescriptions, lined up a doctor in OklahomaCity, and showed great compassion while he unfortunately had to breakterrible news to me, which I know was hard for him to have to do. Wewere truly blessed throughout all the testing to encounter the mostcheerful, kind medical staff members...This was truly Gods Blessing forme, God knew it was a week we needed compassion and he delivered inevery face we met. It is amazing and overwhelming to be surrounded byso many compassionate and kind people. It just shows that God does lookout for us and takes care of us even in the little details... So whatnow? Well we go down to Oklahoma City Wednesday to see a specialist andstart his treatment. And then we take it one day at time..... Of courseone of the thoughts that came to me was "when you are thrown lemons,you make lemonade" of course I said God there are way way too manylemons here I couldn't possible make that much lemonade, and hisresponse was; well then you will have plenty left to make lemon barsand lemon meringue pie. So we will embrace what God has given us today,and trust him to lead us into tomorrow...