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Burdens Are Lifted at Calvary

Great title as this was one of the songs that we shared together today in our morning worship. Thankful for that truth every day, but especially today.

This has been one of those “heavy” cf days.  Yesterday my spirit was a bit weary and as I was trying to figure out why I realized the “worry” over Rachel’s health was creeping in.   She had a sore throat about a week and a half ago.  We did some sinus salt water rinses and have been watching her for signs of sickness.  This is nothing new, as I believe it has now gone to a subconscious level of awareness ALL THE TIME =)!  But, I have noticed a few differences that, although slight, warrant some attention.

First, I must digress.  Last week a dear friend of mine called to let me know that she was praying for us.  I, was of course grateful, because prayer is soooo huge!  Then she went on to tell me that her child was sick the night before with a very high temperature.  He was mostly limp while she rocked him that night.  She prayed for him, and then put him to bed with great concern in her heart for his health.  When he woke the next morning, he was back to his normal, cute self.  She went on to tell me that she felt like God allowed her to feel a little of our daily burden through the moments of holding her sick child and knowing that there was nothing that she could do to make it better.  With a sweet and tearful heart she let me know that she was sorry for this burden of CF that we must carry daily.  Even when Rachel appears well, the knowledge of her disease is constantly there.  My friend was very hesitant to share this with me, because she didn’t want to remind me of our life and its hardships.   However,  I am so blessed that she did.   While Rachel looks so healthy on the outside, the work that it takes to keep her looking that way is enormous!!  I have talked to many CF mama’s (and actually other mom’s that have children with special concerns) and the one thing that many of us have in common is the fact that wether we show it or not…it is constantly on our minds.  There is no escaping the disease.  We try as best as we can to have a “normal” life, but the reality is that it is not.  It is by God’s grace that I can face and rejoice in that fact.  It is by His strength that I stand many days.  His strength is made perfect in ALL OF MY MANY AREAS of weakness.  As, I went on to tell my friend.  I can not count the nights where I have stood and prayed over Rachel while worried like crazy.  Or unobtrusively been counting and assessing her health and breathing when she has been sick or on the verge of it.  It is a burden that we carry everywhere we go!  So it was a comfort for her to share and identify this with me, rather than a burden.

Two recent examples of the load of just the treatments (meaning, she is well, and not concerned with anything other than the actual labor involved in her care).  The night of Rachel’s Raise of Hope fundraiser, we knew it would be a long, late day/night.  So early (after we did her morning treatment) we washed and sterilized her equipment and packed it up to take to the hall for her evening treatment.  Fast forward to the end of the night.  We were busy cleaning up.  Many of the kids were running and playing and we had to call Rachel over to do her treatment in the midst of the clean up.  Well, in the process of unpacking I realized that I had forgotten only one piece of her treatment out of over 20!  GRRR!!  HOWEVER, It was the actual vest.  I had remembered the medications, the two different nebulizers and all of those parts, the compressor, the cords, the hoses…but no vest.  She was not too sad as she was able to go off and play with her friends some more.  I, however was beyond frustrated knowing that no matter what time we got out of the hall, her treatment would be waiting for us when we got home.  So, when we pulled into our house it was just after 11:40 pm.  Vest on..treatment started.  =(  Late night for my sweet girl, because I had forgotten a crucial part.

The second example, was from the other day.  My husband called and we had to rush out of the house to take something to him for the fundraiser that he forgot at home.  Rachel had just woken up.  I grabbed morning medications and a take along breakfast for Rachel and headed out the door.  Med’s, but no treatment.  It felt so weird!! (I have heard it likened to walking out of the house in your boxers…just weird and not right, but a comparison that you may be able to somewhat understand.)  I can just about count on one hand the times that we have run out of the door without doing treatment first over the course of 6 1/2 years and over 2,400 morning treatments!!  It is just not what we do.  We do treatment first all the time, because we know that it is a nonnegotiable thing for her health.  If we let it slide a little, it is likely to slide a lot at some point.  We were gone from the house for about 40 minutes, but the whole time I was feeling that subtle burden and pressure that Rachel’s treatment was not yet done.

I tell you this, not to have you feel pity, because I don’t want pity.  We are blessed so much through having a disease to contend with daily.  For the thousand awful things that come with it, the dependance on the Lord among other things is a treasure to be held.  I tell you to show you that even when my mind is somewhat quiet, the worry is still there.  Working to match “cast your cares upon Jesus”, with the worry and fears step for step.  However, there are some difficult realities of CF/life in general.  All kids get sick.  Although with CF we know that to be true as well, but the ramifications of how that is dealt with is very different.   My other kids get sick and I am able to cuddle them and hold them and wait for them to hopefully feel better soon.  Rachel, on the other hand most often needs some level of intervention.

So, long way around back to my original point.  Rachel’s sore throat didn’t really result in an increased cough, but with CF since it is mostly hidden, there are other markers that we are constantly looking for to see if things are going downhill, since she is not yet old enough to really articulate how she feels.  Over the weekend, I noticed that I was seeing and hearing some of those.  Her weight is one of them.  She has lost almost  2 lbs in the last two weeks (often signals cfers are fighting an infection/bacteria making it harder to breath and using up more calories).  She has appeared very tired throughout the day (could be just weather related or…in cf world oxygen transfer is not efficient enough, signal).  She has also been clearing her throat a lot (could be allergies…or cf new bacteria, or the old one of staph or pseudomonas) and sounds hoarse.  The total of all of these symptoms tells me something is going on in her body.  She is not scheduled for her quarterly check up until the middle of the month, but these total symptoms make it just enough that rather than throwing an antibiotic at questionable symptoms, lab work would be helpful.  I am praying that it is just allergies.  Could be?  Rachel, by the grace and goodness of the Lord He has allowed her to stay out of the hospital since she was released from the NICU as a newborn.  She is almost 7!  Praise the Lord!  But, I know the reality is that at some point she will need a “tune-up” with her lungs (hospitalization where dr’s administer strong antibiotics through iv’s to help the burden of the lungs and allow her body to fight the mucus, bacteria and inflammation).  Most CFers have had a least one or two per year by her age.  I am praying that she is one of those rare people that don’t need one until she is…87!   But today as I was waiting for the office to be open for a call to make an appointment, I realized that some times the stress of this burden is just so heavy.  Not ever knowing the “when” of sickness will hit, is hard.  I started thinking about the Great Strides walk in 2 weeks and how excited she is for that, or the track meet that she has been working so hard to practice for.  We just never really know when life will throw curves at us.  But, we DO KNOW WHO WALKS WITH US!!!  Thankful for God’s presence and care during all of life!   The calm and the storms.  He is so very good.

So, off to an appointment tomorrow!  I was already warned that it would be an especially long one. =( Bringing lots of things to keep her busy. =)

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One Response

  1. Praying for your peace tonight and for good news tomorrow! We love you guys!

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