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    Albuterol (2-4 x)
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    Percussion (30 minutes)
    alpha lipoid acid (1x)
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Faith OVER Fears

imagesHave you ever been afraid of something?  I mean truly afraid?  The kind of fear that if you focused on it for more than a nanosecond, it would paralyze you?  Think about something happening to your child or someone else you love.  Well, that emotion that you just had is something hidden beneath the   “getting it done” exterior of what many parent of CF (and honestly probably every other fatal disease) feel at times over the health and wellbeing of their child.  The constant awareness of a clock ticking moments away.  This week I have been prayerfully fighting those fears.  God is able…and I KNOW HE CARES!!  But their is still a burden that weighs heavily on my heart.  I have to choose Faith over Fear today!

Rachel has been sick now going on 4 months off and on.  She doesn’t seem able to catch a break for very long.  It is the ever present reminder that she is fighting a fatal disease.  She coughs and I wonder, she tires easily and I am concerned, she is grumpy and I see the discomfort that she doesn’t want to admit.  Most days, we do our nebulizers, vest and take the multitudes of medication then try like mad to live a normal rest of the day.  However…in the secret recesses of my mind and heart…I ache!

I ache that despite our best efforts, Rachel’s body is deteriorating because of CF.  There is NOTHING that I can do to stop it.
I watch.
I cry.
I pray.
I beg for God’s mercy on her sweet soul.
I put on a brave face.

She laughs.
She plays.
She coughs.
She runs hard (and thinks she’s fast =)).
She makes the most of the day!

It is “heart work” caring for a child with a disease.

Last night another little boy died with CF.  I did not know him or his family.  However, the tears wouldn’t stop.  I think many CF parents face the mortality of their child with every young CF life lost.  =( Last night when I stopped to kiss Rachel goodnight,  I licked my lips on purpose somehow hoping that it would not taste like salt.  It did!  This is an ever present reminder of the disease that seeks to steal her breath and life.  With the salty taste still in my mouth from her sweet forehead, I took an extra moment to cherish this precious life.  As much as she is “just” a kid sometimes with the joys and challenges of childhood, the stark taste of salt jolts me each time into the reality of a life full of difficulties.   However, I was also reminded to enjoy each moment I get with each of my precious treasures.   A hard balance.  I prayed over each child and kissed each forehead.  As I laid my head on my pillow I was heartsick at the incredible fight ahead for Rachel and our entire family.  Rachel has struggled for 4 months, which in the CF world is not too much and somewhat expected, however the fear that constantly knocks at the back of my mind is…the what if’s?

Rachel will complete her latest round of oral abx’s tomorrow morning.  I still hear the crud.  Not nearly as intense or junky as without abx’s but definitely STILL there.  She has another 14 days of her inhaled Tobi.  Praying for health, but judging from what I hear…the oral abx may just be masking it. =(  Fear comes quickly over the future near and far…and prayer for God to show Himself strong in the midst of our battle.

Through my hidden tears this morning (as I feel the need sometimes to put on a strong front and not let my children know/see my fears as it relates to CF because it is so often just below the surface), we keep fighting.  I will send more letters, and ask more people to join in finding a cure for Rachel.  I will beg others to see that Rachel’s life and future CAN be changed with awareness and money given to the CFF.  These dollars matter!  It is such a balance of hope in that there are medications SO close to being able to help Rachel and others like her.  And then the reality, that like John the 12 year old that died last night , it could be too late…is a truth that today I will fight with prayer and faith!

Today I will speak life…cherish life…AND love the God who has given life!!

FAITH

over
fear

The Lord your God is in your midst, a mighty one who will save; he will rejoice over you with gladness; he will quiet you by his love; he will exult over you with loud singing. Zephaniah 3:17

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One Response

  1. So sorry to hear Rachel is not getting back to “normal” yet. What an exhausting time physically and emotionally for you all. Thank you for sharing your thoughts and your fears. It really helps me know how to pray for you.

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