• My Family

    Blessed by the Lord for the Joy of family!!

  • Rachel’s Daily Cystic Fibrosis Medications

    Albuterol (2-4 x)
    Hypertonic (2x)
    Pulmozyme (1x)
    Glutathione Inhaled (2x)
    Advair (2x)
    Prevacid (2X)
    Ursodial (2x)
    Glutathione oral (3x)
    L-Arginine (1x)
    Acidophilus (3x)
    Vitamin (2x)
    Periactin (2x)
    vitamin d3 (1x)
    Cal/Magnesium blend (1x)
    ADEK (1x M,W,F)
    Creon 12 (6 with meals and snacks)
    Vest (2-3x) 30 minutes
    Percussion (30 minutes)
    alpha lipoid acid (1x)
    singulair (1x)
    fish oil (1x)
    nasonex (1x)
    zyrtec (1x)
    azithromyicin (M, W, F)

  • Recent Posts

  • Monthly Archives

  • Advertisements

2017 Great Strides Walk

Look at all of those friends loving on us!! ❤

Well, it has now been three Saturday’s since the walk.  I am so amazed at how quickly time passes sometimes.  Life continues to be a blur around here with school, projects, family, and just daily life.  I have wanted to write about the walk every day, but atlas….life my amazing hubby and those five precious kiddos keep things going FAST!!


The morning of the walk was rainy, cloudy and COLD!  So fitting as the weather felt like a mirror of cystic fibrosis many days, and especially this year.  The morning was full of crazy business trying get everything done with treatments, feeding tube blends, and pushing the food in, not to mention my phone buzzing left and right with people that were (completely and understandably) not about to show up.  It was gloomy, but we pressed on with joy that we were able and healthy enough to walk.  While we weren’t sure how many people would be there for the walk, we knew we had a backing of amazing people that loved and cared for us…and so we were grateful.

Caleb wasn’t too happy seeing the downpour of raining.

My fearless warrior

Instead of the walk being around the park, it was in a parking garage.  Although not beautiful, we were incredibly thankful for the dry environment.  My anxiety is great every year at the walk because of the cross contamination with others with cystic fibrosis in a more localized area.  But this year that was even more heightened because of the closer proximity of in the garage.  Rachel had a mask, and that helped lessen the stress, and we found a spot in the corner close to fresh air.

We gathered our team for pictures and…again, my heart was COMPLETELY overwhelmed!!  So many dear friends, and loved ones that took time out on a cold, dreary, Saturday morning to show support to my girl and her fight with cystic fibrosis.  Each and every year I am humbled, overwhelmed and emotional.  Honestly my heart so full with encouragement and HOPE seeing each person that it is hard to keep my emotions, gratitude, and pain from rising to the surface!  Walk day, more than any other day of the year…is a reminder to be grateful for the journey and where we have come from.  But, it is also a grave reminder of how very far we have to go.  Each friend that stands beside us brings an incredible encouragement that my girl’s life is valuable, precious despite the hardship…and the hopefully her future will be brighter.  And, if it is full of difficulty…that others care and will support our family.  That knowledge helps us to breathe and walk a bit easier.

Frankly, this year, more than most, my heart hurt holding my girl’s hand.  We have experienced just a bit more sorrow, a little more burden, an increase in the pain that this awful disease of CF represents.  The very fact that while research is a wonderful thing, and that the CFF is constantly working for Rachel’s future.  The knowledge is real that if things don’t change and fairly soon, that the increased in damage to her lungs and consequential hardships of CF are only increasing too.  When she was born, the doctors told us over and over that there was no better time to be born with CF as research and strides were being made daily.  And, though we knew that was true at the time, the current truth is that with every passing day and year CF wreaks more and more havoc in my beautiful girl’s body.  These walks, deeply remind us of the passing of time.  This was our 11th year of walking.  My girl will be 12 in July and it feels like a blink, and we know that 12 is around half the age of the current average age of death of girls with cf.  That is a HARD reality, and something that NEVER leaves our minds.  We Praise God for the progress that has been made, and dream of the medications being able to add decades to her life and those like her.  But there is a hard, heavy, heart, hurt in watching her grow older.  While we CELEBRATE the milestones, please know that the smile on our face often hides the incredible fear in our hearts for this passing of time.  But God is faithful and gives us friends to encourage and move us forward!  Seeing a SEA OF FEARLESS t-shirts will inspire any heart!

Having friends beside us…
Knowing others are praying for us…
The incredible people willing to walk with us…
and the many giving towards our Hope…


OUR WALK represents PROGRESS!!

Each person…a pillar of strength that God uses in our lives.







Thank you again to each and every one of our precious friends that have poured out love to my girl and our family.  Our deep, and authentic gratitude could never express our hearts, so we ask the Lord in Heaven to communicate it for us.  Thank you for the gift of life and breath and an encouragement to be FEARLESS for the Lord is with us…



Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

%d bloggers like this: