• My Family

    Blessed by the Lord for the Joy of family!!

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    Albuterol (2-4 x)
    Hypertonic (2x)
    Pulmozyme (1x)
    Glutathione Inhaled (2x)
    Advair (2x)
    Prevacid (2X)
    Ursodial (2x)
    Glutathione oral (3x)
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    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)

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Just One Day

We have had a busy last few days around here.  Between sewing, baseball and swimming lessons…it has been non-stop.  The kids love it, and mom and dad are..well surviving. =)  The one difficult part of being a “normal family busy” is that we have to watch carefully for Rachel getting worn down.  It seems that is currently happening.  She has been very fussy the last few days and two days ago started complaining about a sore throat.  Yesterday, she was crying with each medications during her treatment.  It got somewhat better throughout the day, but her appetite is down and today she said it hurts to swallow water.  Call made into the doctor, now we are waiting to start an antibiotic more than likely. =( Boo.  Thankful for medication that can make her feel better, but the side effects from antibiotics are not usually too kind to little Ms. Rachel.

Precious “reads”lately. 

The books pictured above are special books in our home.  These are the books I read to my kiddos when I need a reminder, or a validation of the gift and task that I have been given in caring for their precious souls. If you haven’t read them, you should try to locate them, because they are wonderful.

Just in Case You Ever Wonder by Max Lucado is an amazing book.  I read it to a child at least once every other week.  It is incredible.   It chronicles the life of a child, and the Creator that made every part of that child.  The book talks of how special each person is and how God made you like no one else. The smiles, the laughs the funny ways each child walks and talks.  The lines below are true for all of my precious children, but somehow they take on special meaning when you have a child with medical needs.
I’ll always love you.
I’ll always hug you.
I’ll always be on your side…just in case you ever wonder.

My favorite part of the book is that it explains that I am hear to teach my kids about God and Heaven.
He loves you.
He protects you.
He and His angels are always watching over you.

Not only do I need to instill that in their little hearts, but I also need to be reminded of that when I am sad, worried, or just plain tired from the trials of life.

The last pages of the book talk about the truths that matter.  “God wants me to make sure you know about heaven.  There are no tears there.  It’s a wonderful place.  You never have to say “good-bye” or “good night”.  You never get cold or sick or afraid.”

While I read this book often, it rarely fails that the last page is hard for me to read every time!  “In heaven  you are so close to God that He will hug you, just like I hug you.  It’s going to be wonderful.  I will be there, too.  I promise.  We will be there together, forever.  Remember that…just in case you ever wonder.”  This is particually real with a child that has a life expectancy that is not the average.  And as much as I pray that Rachel outlives me, the reality as it stands now is that we need a miracle for that to happen.  The verse in the Bible that talks about there being no greater joy that for a parent to know that their children are walking with the Lord…moves my heart to tears.  Lately, Rachel has been asking a lot of questions about heaven.  I know that those questions are drawing her to a relationship with the Master.  I continue to pray that for her life!  No mater if that is less than the average CF live, or the life that sets records. =) Either way, heaven is our hope!

I think I love this book most because it is a reminder that all of my precious children are His first!  My goal as a mother is not to have them have an easy life, but rather one that is totally focused on accepting Christ as their Savior and being assured that they will be in heaven with me someday!!

The second book I picked up a few weeks ago and it too makes me cry.  It is called, If I Could Be Sick for You for Just One Day, by Kathy Cramer.  It is a beautifully written book.  It was written by a woman who watched her friend battle cancer, but is certainly applies to Cystic Fibrosis too.  The first page in the book reads,
I wish I could be sick for you for just one day.
I would let you go outside and run and play!

The lines in this book are amazing.  It is a short read, but so heartfelt!
I would walk your path with heavy tired steps.
I would eat the food that doesn’t taste right,
you could ride a roller coaster and squeal with delight.

I would swallow the pills that don’t want to stay down.

The last line pulls at the heartstrings of what it means to be a caregiver.
“I wish I could be sick for you for just one day.
But since I can’t…by your side I will stay.”

So, as I feel heavy hearted today with the uncertainty of an illness approaching for Rachel…I pray for all of my children to have hearts that are yielded and given over completely to the Lord!  I pray for strength.  I pray for God’s peace.  He is a good God, and I know He walks beside us.

I know that ~Just One Day…we will be with Him in heaven forever!  Thankful for that hope and promise.

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One Response

  1. Hello My Dear 🙂
    We read JUST IN CASE YOU EVER WONDER lots also. And the boys always laugh at me on the last page. Because I say in heaven they are no tears, no vests, no breathing treatments and no coughs 🙂 They know that is not really in the book, but they know to expect it!!!
    I have every intention to write you and start a dialogue!!! Life is just so gosh darn busy!!!

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