• 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)

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Tired of Routine

Rachel doing her vest for the firt time in the car. It wasn't too bad after the 30 min. it took me to remember everything. =)

Today I am tired.  I feel the frustration and burden of being a caretaker in a fight for life and health…and I wish for just a moment that I could hold, love and be with my child without this burden of her disease.  If having, knowing and loving my child comes with this burden of a difficult disease…then by all means I will take it and take it with great joy.  However, today I just wish for a moment that….

–we could start the day with out the thought of medications and timing them just right to fit them all it-

–we didn’t have to hit the floor and have my first thought be to take our her nebulizers out of the sterilizer so that they will air dry before we need them-

–that we could just start the day with out having to worry that we get enough calories in for breakfast (since it is the time she is the most ready to eat).

–that treatments were not hanging over our heads every morning or that I have to stop her from playing with her siblings so that we can do what we need to in order to keep her lungs well.

–wish I hadn’t read the “Good News” in the paper this week that CFer’s are living longer.  We have been told since her diagnosis that the average was 37…not exactly true.  It is the difference between mean and median..which is huge.  The article stated stats of -“Just 10 years ago only 35% of cfers made it past 18.  Now 47% are making it past 18.”  This was expressed as an amazing development.  The article also went on to say that of the 400 CF deaths that the majority of them were of teens and early 20’S patients. ARRRRGGGG!!!!!  I hate that stat!!!  Only 47% live to be over 18!!!  That makes this mama’s heart sad.

Today I am allowing myself to feel the sadness for a moment.  I don’t live in this spot, because frankly I CAN’T it is too hard of a spot to live in and I have a bunch of very fun other little people that need me to be here.  But today…I am sad.  As tired of the routine as I am…I know that not even for one day can I stop the fight.  All it takes is one day for things to turn.

Soooo what to do…P-R-A-Y!!

REJOICE in how we have been blessed.  The many, many ways and  turn MY Eyes upon Jesus.

Fun times at the College World Series. Thankful we could go.

Often times when I feel this way, the one thing that helps immensely is to start listing the things that I am thankful today.

A wonderful friend of our family found, called, went and picked up enzymes in VA and then sent them to via UPS!!  Amazing blessing.  Knowing that the box was one more month of not having to worry about Rachel’s enzymes!!  HUGE.

Christmas??? No, just another package of medications...fun anyway.

Watching my 4 wonderful children be so very joyful to open the package like it was a Christmas present…even though they know it is only med’s.  They are always so excited to see the packing contents, popping the bubbles is the favorite.  (However, Shiloh had a new fascination for the packing peanuts and left an enormous mess in the living room. Now that is a fun mess to try to clean up being statically charged.)

Thankful for the good health of everyone in our house at the time.  HUGE blessing.  I cherish these times more than I can explain or start to express. It is a time of just taking in a sigh of relief and readying myself for the next battle.

Field of Dreams!! Praying for all of my kiddos futures and their dependence on the Lord.

I am thankful for my home, full of clutter, medical equipment and supplies, toys, books and more books.  I am thankful for the little people that God has loaned me.

See…already I feel better.  Don’t know if anyone has the patients to read such a long blog, but if you do…please know that my blog often serves two purposes.  One is to  encourage friends and family to know what is going on in our lives, but more important-writing often brings healing to by soul.  Already I have a better outlook on today.  It didn’t start great with my 2 year old slamming doors on a Saturday morning at 5:45am ready to start her (and my) day.  She was complete with cowboy boots, a backpack filled with books.  Ugg!!  Followed with a smile.

Praising the Lord for today.  Even with the routine that at time brings me to the point of tears, it also brings me to a great realization that I am a child in need of the loving hand of my Father and Savior.  He is!!!!  Therefore I can be what He needs me to be.

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2 Responses

  1. Tiff…catching up on your blog and I am so glad that I did. Thank you for your honesty. It humbles me to think of what a bad attitude I have sometimes about the everyday inconveniences that I deal with. You deal with so much more and yet your attitude is so amazing. God’s grace and peace are so evident in you. Praying for you today and if there is a way for me to help find enzymes here in TX…please let me know. I will drive wherever you need me to in a heartbeat!!

    • Jenn you are sooo very sweet, and just knowing that there is a person like you out there makes me smile at times. I think of you more than you know. I so wish that we lived closer, I miss your direct influence on my life. I can’t tell you the amount of times I use your term, “It is what it is.” that you coined some 4 years ago or more. I love it, and I think of you everytime I use it, which these days is often. =) Take care my inspirational friend.
      May you have a blessed and God honoring day today.

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