• 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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Live Like We Are Dying

Teach us to number our days so that we may gain a heart of wisdom. Ps. 90:12

Rachel loves Great Grandma. What a blessing to have someone 94 years old in our life!! Amazing woman who lives this out this statement daily.

 

 

Sometimes it is really hard to not get caught up in thinking about life expectancy.  Most of us don’t probably ever think about it in the course of our days/weeks/months or even years.  However, with Cystic Fibrosis it is something that is constantly on our minds.  I think understanding the brevity of life is one of the major blessings that comes from this disease.  The Bible is full of wisdom and comfort for this awesome part of life…death.

Our family loves the new song out, that talks about  living like we are dying.  In doing that we are (or should be) more bold for Christ, more loving to those around us, more concerned about those who don’t know Christ.  Death is something that we think about often, not in doom and gloomy way, but rather in a victorious, charge to improve the way we live each day.

How does this relate to CF…In CF the predicited median age of survival is 37 (That means that a child born today is “predicted” to make it to the median-not average age of 37.)  While the actual average of people that die today from CF is around 22 or 23.  Median refers to the middle age, not the average for those of you that understand statistics. Looking at these numbers drive me crazy!!  Most times I don’t even think about these numbers, but every once in a while these numbers creep in my mind along with the fear they represent.  I hate it!

The last few weeks I have been working really hard on fundraising for CF. While I love knowing that every dollar I raise, helps in the research toward curing this disease, it is unfortunately a reminder at times of just what this disease can do to people.  It has been a great blessing to have an online community of people to talk to.  However, the reality of how difficult this disease is and can be smacks me in the face at times.  Not knowing how Rachel’s disease will unfold is, at times frightening.  I talked to a guy the other day that was 66, whooohooot!!  I love hearing those kind of numbers.  They help on days when I know of others in their teens that are struggling to make it, or who need new lungs  to do so.

Last night I read a blog from one of my favorite people that have Cystic Fibrosis.  His blog is called runsickboyrun.blogspot.com  (go and check it out).   He has an amazing, God given perspective on CF.  He just turned 31, and made a joke in the fact that he only has 6 more years left…better make them count.  HOWEVER, HE HAS NO INTENTION OF SLOWING DOWN.  I love his “kick cf” attitude!  In his recent post he gave me a great reminder about the stats that are presented with CF.  It was the fact that people who NEVER do treatments, or periodically at best are included in our CF stats.  I haven’t ever thought about that.  To me, I just can’t get my mind around NOT doing treatments.  In 5 1/2 years come rain or shine we have not missed a treatment.  It is just not even an option.  It is as common as eating and drinking…we just do it.  So to be reminded that we do have a part to play in managing this disease is refreshing.  Now I do know of several parents out there that have been like us (not missing treatments and working their tales off), and still struggle or have lost the fight with young children.  So this reality is equally difficult.

As Paul and I continue to teach and work at raising our children to love the Lord, we also want to work at teaching them the precious gift and promise that comes…not from this life, but from our Heavenly one.  CF or not, we need to live like we are dying.

Rachel, grandma and Great grandma with our orange Great Strides team shirts.

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One Response

  1. Hey girl,
    Of course you can post my link on your blog! I’m glad you found my post helpful! I am SOOO glad you can post on my blog! If you have trouble again, sign up for a blogger account (you don’t have to open a blog). That should help you with any problems you’re running into. But if that doesn’t work, let me know. Obviously, you don’t have to. But posting anonymously is harder, I think. Nonetheless, I’d love to add your blog to mine. Would that be ok? Thanks again for your posts, comments and sweet words of encouragement! I’m glad I’m in this fight with you. 🙂
    Breck

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