One Year Down

April 28, 2014... in this house, that is known as the day our world flipped upside down. After a few months of deliberating on whether to test Kambree for Cystic Fibrosis, the decision was made that we needed to rule it out... you know so we could put the whole scare behind us....and get on with our lives!

Here Kambree is, innocently watching a cartoon on her iPad.... hooked up to the machine, that was SUPPOSED to tell us, she was completely normal--no disease present.... just like her brother. It was supposed to produce results that would once again teach me, that I worried and stressed about something....for nothing.

 

But it didn't. Instead, it revealed to us a secret about our daughter, we hadn't know for the first 7 years of her life. It informed us that her cough we'd listened to night after night since ... wasn't allergies. That her excessive sweating, was in fact a cause for concern. It revealed to us, that our daughter has a disease..... attacking her body.... producing extra thick and sticky mucus, that coats her airways, making it difficult to breathe....and we learned that the same sticky mucus, likes to hold on to infections and bacteria, that most "normal" bodies can kick on their own.

 

It revealed more than that though. That test, showed us, that we were stronger than we ever knew we were. It showed us, that our faith in God, was not just strong in the good times... but it was strong enough to get us through the darkest valleys as well.

 

It revealed to us, that even though we were sure there was NO way, we could add 3 hours a day of treatments to our already busy life....that when push comes to shove...you find a way to make it all fit.

 

Quick math and approximations, reveals that 45 entire days (24 hour periods) of the past 365 have been spent doing treatments..... and that doesn't include the sterilizing of all the equipment, the endless hours of phone calls with insurance companies, hospitals, pharmacies. This diagnosis....has felt like a new part time job. 

 

When we were going through the scare with Kenton, and I had been reading up on what to expect... I remember thinking there was no way I could ever keep up with all of the necessary things that come with a CF diagnosis..... early on in Kambree's diagnosis...I remember feeling as though I was drowning.... but you know... it gets easier... instead of looking at the entire mountain, you just take one step at a time.... and before you know it, you're at the top.

 

I've had to apply that same principal to the emotional side of this situation too. Here I am... one year later.... still trying to figure out how to truly enjoy the moment I am in...trying to not let my whole life be defined by this disease. Honestly, I've had this new friend following me around since the moment I received the devastating call with the news...... this "friend" would better be known as a "dark cloud". Some days it's pretty heavy, and hard to see through.... but most of the time, it just lingers in the background.... of a pretty awesome life... and whenever I start to get too happy, or carefree... it snaps me back to reality. This same dark cloud likes to get me thinking down the road too far.... pondering on when this thing takes a bad turn.... and what the future for my daughter looks like.... and this dark cloud makes it REALLY hard to see bright things..... happy endings.

 

Honestly, it may not ever go away.... I don't know...but this new friend of mine, doesn't have control of me. I choose to fight the cloud....and not let it take over my thoughts... not let it steal my joy. It's not easy... but it's possible. I pray that as time continues to pass, it will become more and more distant.

 

Tomorrow morning.... ironically, I'll be waiting for another phone call.... much like last year. This one, will be giving us an update on her infection status... pray with me, that despite the decrease in lung function at her appointment last week, and increase in symptoms...that by some miracle, the infection is gone....  we really need it to be gone!

 

In other news......

 

In honor of one year down on this "new life", we thought it would be a pretty appropriate time to take the family on a vacation.... so we wrote Kambree a poem, and surprised her a few weeks ago... her reaction was priceless... I'll post it on FB once I get it trimmed short enough. So.....Saturday, after the CF Great Strides Walk..... we are loading up and heading on a cruise! I can not WAIT to have my babies on a vacation they will remember forever....

 

So that's it.... one year down.. and we're still trucking along.....heads above water. Ready to tackle another year of this disease....and to come out stronger in the end.

 

I can't thank you all enough for the amazing support...and encouragement...and prayers..... you've helped us carry this load... no doubt about it!

 

Those of you who are local, and would like to join us....Chic-fi-la is doing a fundraiser on Kambree's behalf.... Thursday night...

 

 Or if you'd like.... we are winding down our Great Strides Walk donations.... and would be so grateful for any amount!

 

Donations are HUGE for this disease.. they are literally what have taken the life expectancy from 10 years old.... to 37 years old..... so the theme of the walk... "adding tomorrows"....is literally doing just that!  Here's the link to  White'sWarriors  http://fightcf.cff.org/site/TR/GreatStrides/58_Heart_of_America_Kansas_City/1037735895?pg=team&fr_id=3311&team_id=31864

 

You can start your own campaign....or click on Kambree White's name and donate.