Thursday, September 22, 2011


My precious little love,

Oh, days like these are hard and sobering.  Just when I feel that I've assimilated new information, new prescriptions, new routines, we get just a little more "stuff" than we hoped.  You had a routine throat swab when we were at OHSU 10 days ago to check for bacteria.  Standard CF stuff.  You colonize bacteria in your lungs so the docs always check to see which one we're dealing with.  This was your first one.  We were told that there are a lot of different bacteria out there that CF patients harbor but that there were two that would be very rare for you to have at your age and they would require treatment.  The results came today by phone call, and you have one of the two rare ones:  pseudomonas.  Doesn't it just sound mean?  Unfortunately, it requires lengthy times of medications to try to eradicate it (temporarily at least.)  We will be starting a one month 2x a day TOBI medication through a nebulizer and another 2 week medication orally.  It all has to be arranged through pharmacies, insurance companies and durable medical equipment companies.  This stuff isn't cheap.  BAM!  Reality check.

I got off the phone and did what I've had to do each time something changes; each time we hear new news.  Breathe.  Pray.  Breathe.  Self-talk.  Lots of self-talk.  LORD!!!!  Come to our rescue...  I went to the back door and watched the kids playing.  I talked to myself and prayed and decided to do what I've done so and trust.  It was hard today.  I know it will get more difficult to walk the talk.  Person after person has spoken of how encouraged they have been by this blog; how the Lord has spoken to them through these words.  I have to admit, I have read some of these posts and wonder who wrote them.  Is that me?  Will I endure this trial and still shout the Lord's goodness?  Here it is:  I can't do anything else.  Yes, these days scare me.  Yes, that sickening feeling reverberates through my body.  Yes, it crushes the heart of this Mama to hear bad news about you, my amazing daughter.  It can't be true.  You are perfect.  You smile.  You coo. You stare so intently in my eyes.  And yet, it's real.  These days are proof of that.

So, we carry on.  I called my family.  I let them love me and cry with me.  I straightened up a bit in anticipation of friends arriving.  The Lord knew this information would arrive to my ears today.  He showed me so much love through a friend who has kindly pursued me in prayer and kindness.  She brought us breakfast and my favorite coffee and visited the morning away.  A half hour after she left another friend texted that she was bringing lunch to us.  She arrived with a smile and I got the phone call while she was here.  This is the same friend who was at my side when we received the news of your diagnosis initially.  None of these friends knew that today would be a hard day.  I didn't either.  But they loved, and gave, and were just here.  Present.  Lovely.  Kind.  More friends arrived in the afternoon to visit and the mother of a dear friend showed up with cookies and cupcakes.  All just because.   Lord, your faithfulness shown through friends has carried me through these days.  Today was no exception.

Let this always be true of me:

 Let me give glory to you, O God, my King; and blessing to your name for ever and ever.
Psalm 145:1

1 comment:

  1. Kelly~ to quote YOU yesterday: "I'm going to go against what I would normally do (which is "I can do everything myself, darn it!") and say yes :)." That wasn't you. That was the God Who Knows leading you His Way. Continue to let Him lead you through this. Allow Him to bless you and your family, by whatever means He chooses. I told you earlier, my intention earlier was not to stay, but I had told my boy beforehand "let's just wait and see". I'm so glad we did. Continue to keep your eyes on Him.

    "Great is the Lord and most worthy of praise;
    his greatness no one can fathom.
    One generation will commend your works to another;
    they will tell of your mighty acts.
    They will speak of the glorious splendor of your majesty,
    and I will meditate on your wonderful works.
    They will tell of the power of your awesome works,
    and I will proclaim your great deeds.
    They will celebrate your abundant goodness
    and joyfully sing of your righteousness."
    ~Psalm 145:3-7