Sunday, January 23, 2011

my Bailey Caelyn

Good morning...hoping this Sunday finds you resting and refilled.  Of course if you're a mom or dad of young children, having a Sabbath day is a difficult concept - if you truly rest on Sunday (and by that I mean no housework or errands - you can't skip a day of childrearing, unless you have someone that takes your kids out of the house that day) all of your chores for the week are multiplied.  Don't run the dishwasher or put away that laundry?  Don't wipe up the bathroom counters or vac up the dirt the dog brought in?  It will be worse tomorrow.

So how does one obey God and take a day of rest, without having to do double the work the next day?  If you figure it out let me know.

I wasn't going to write about that.

I want to write about Bailey.

(excuse me while I take a moment to pat myself on the back for figuring out how to load up a pic here)

 She is asleep in my bed right now, sick.  She appears to have a virus of some kind, achy, fever, vomiting, headache, etc.  I am thankful I went to bed last night at 10pm, as every hour on the hour after 1am was with Bailey and trying to help her.  When she is sick I worry about her so much, wondering what's going on in that little body of hers.  Because she has Cystic Fibrosis ( go to for more info) we have to be watchful that her symptoms don't get worse, as CFers have a much harder time fighting infection/bacteria, etc.  We are SO grateful that her 7 years have been filled with health and joy - at this point most CFers have experienced numerous hospital stays and their days are filled with breathing treatments to clear their lungs of mucus and taking enzymes before every meal so they can digest their food.

Bailey does have to do a little of that, and she's asthmatic so she uses inhalers, but she doesn't take any enzymes and has never been an in-patient.

When Bailey was first diagnosed, I grieved more than when my father died.  She was a precious baby, happy and content.  Her thighs had delicious nooks and crannies, and she was the picture of health.  I couldn't believe that she had something inside of her that the internet was telling me could kill her - as young as a child, on average as a 30-something adult.  CF has no cure (YET) and it is a progressive disease.  I went crazy researching the internet all hours of the night, reading medical journals and blogs, trying to find that magic article that was going to tell me she was going to live a long, happy, healthy life.  I did find CFers that had her particular genetic mutation (there are over 1000 and hers is mild) and one was still alive in his 60's - but in that I didn't even take much comfort because males with her mutation show less symptoms than females.

I was missing out on her babyhood, worrying so much about her adulthood.

That season of my life is over, and since I have come to terms with her diagnosis.  I struggled with God during that time in my life - not understanding how He could let my precious baby who did nothing wrong, have something so ugly lurking inside of her.  I have come to believe that He has big plans for Bailey, and her CF won't hold her back, it will strengthen her and be used for His glory.  The most I can understand God is from a parent's perspective.  He loves her so much, and wants nothing but the best for her.  But we are in a fallen world, and this side of Heaven there is no perfection, no life without challenges.  He wants to help us, just as we want to help our children - He wants to protect us and bless us - but He knows what the end of the road looks like and we don't.  He knows what's around every bend, what will happen.  I don't know how He works, but after all these years of learning and praying, my heart tells me His will for us is good, His love is like nothing I can comprehend.  And because I love my children so much, I can only marvel at how much He loves them, and I am thankful beyond words.  Trusting God has been a process for me, and I'm still learning.  But for today, I am trusting.

When I pray for my daughter, I pray for protection from sickness and ill-will, I pray for joy and contentment, and that her spirit of love be shared with others.  God is using Bailey and I am so blessed to be a front-row spectator.

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