Sweet & Salty Kisses

Sweet & Salty Kisses

Sweet & Salty Kisses

Sweet & Salty Kisses

Blessed

Count your blessings one by one.......

Grace
Christ
Wonderful Husband
Beautiful Children
Provision
His Strength

Thank you Jesus.

Anniversary

Today marks our fifteenth wedding anniversary.  My how time flies!  I truly can't believe it's  been this long.  I am married to the most wonderful man.  I thank God for him.  We are so blessed with each other and our five gifts from God.  Thank you Lord for blessing our marriage.

Tomorrow we were to go out of town for an overnight get-a-way to celebrate.  But, our sweet boy has come down with a cold.  Instead of me being slightly preoccupied with worry we, have decided to wait and go in a few weeks.  I am relieved that my dear husband asked me if I would rather wait.  I so want this to be a special time for us and didn't want to spend it concerned for little-bit back home.

Well, short post here.  Just felt like expressing how fantastic my dear husband is and how grateful I am to God for him.  Thank you Jesus!

Ramblings

It's been a while since I've landed here.  There have been so many things going on and I stay so busy with all our beautiful blessings.

It's been a year since our little one was diagnosed with Cystic Fibrosis.  Wow.  A year ago I was such a mess.  What a time of learning and  trusting in the Lord it has been.  Things are in a predictable routine now and I'm not so overwhelmed.  I am thanking God for this season of calm and good health.  Our little guy is doing so well.  His weight is up and he's doing awesome.

Now that things have settled down with our little guy I've had time to devote to my own health.  I had been putting off a lot of things because there was no time and I was so focused on CF.  But, now I've been able to see a couple of docs and do some more research into what's been ailing me.  Inflammatory arthritis.  Talk about complicated.  The doctor is leaning towards a further diagnosis of what kind of inflammatory arthritis it is.  Undifferentiated Spondylarthropy or Rheumatoid Arthritis.  He's leaning towards to former and so am I.  There have been so many symptoms over the years and they have just gotten worse.  The medication is helping to improve my symptoms.  But, I continue to have fatigue, low grade fevers, pains that migrate from day to day, and the continued uncertainty of exactly what kind of arthritis I have.  It's been a relief to finally get some answers.  I see the rheumy doc in a couple of months for a follow up.  I pray to have further answers then.

Well, I can hear one of the blessings coughing upstairs.  Think I should go check.  Thanks for reading and I hope to become more regular about posting.

God bless.

Words Escape Me

Why is it when I've finally found the time (not really............it's late) and the opportunity to write...........the words that having been churning all day in my head..........just disappear?

The one thought that does keep coming to my mind was the odd feeling of sitting in a room with so many people last weekend..........and yet feeling disconnected at the same time.  I know from where is comes.  But, it's an odd feeling nevertheless.  So many people there had, by there presence, donated towards research for CF.  Yet, they didn't have a clue.  That's okay.  Either did I, before.  Nothing wrong with that.  But, there was such an odd feeling within me.  The idea that you can know a thing..........without really knowing it.  I sat there........watching all these young people and knowing they were reading the words of information displayed on the screens......but they didn't really understand how life altering CF is from morning to night....day in....day out.  They sat and stood singing the words to every song.  They had come for the performance........and I'm glad.  It's what raised the money.  But, we were there only because the event was for CF.  They all wanted their picture taken with their favorite musician......I just wanted to put a picture of our sweet boy in the hands of the musician......to put a face with the cause.  And, I did.  And he was oh so gracious.  Connection made. Thank you Rhett.

It wasn't too long ago that I was that young woman at the concert anticipating the all the future would hold.  And just like that......I'm forty-three.  Age makes you think.  It gives you some introspection.  Can't imagine what it's like to be sixty or eighty.  The thoughts that must go through one's head then.

There are some days that the depth of this world and all that is inherent in being human upon it are so inexpressible.  God has created such an amazingly complex and beautiful creature in man.  I look at our children with wonder each day as their quirks and personalities unfold.

I truly can't find the words tonight.........

Off Kilter

Monday was a long day.  It was clinic day for us.  There were things that were different and unexpected and these threw me off kilter a bit.  I didn't realize how much until we arrived home and I hit the bed.  Finally done with a long day filled with both joys and stresses I relaxed and the emotions came freely.

There are so many things about CF that are extremely difficult.  Finding balance in life with CF for our son, as his mom, is so difficult.  I want the most normal life possible for him without taking stupid and unnecessary risks.  Risks for those with Cystic Fibrosis are all about bacteria!  Someone at our clinic said it's like walking a balance beam between total paranoia and too much risk.  In between is the fine line that is normal for our son.  We've just got to find it.  We, as his parents, have to define and decide exactly where the balance beam lies.

Progressive..........it's a thing that can allow me some denial..............some.  Until I see an x-ray and there's a bit of white fuzziness that wasn't there before.  Nothing overwhelming.  Just a confirmation of the junk I've heard rattling around in there.  Progressive.............undetermined progressiveness.  Speed unknown.

Will I ever get accustomed to this?  Like, I want to?  The only thing about CF that is certain is that it is progressive.  How I loathe that word............on many levels.

My mind knows that the things we consider certain many times are not.  There is only one certainty and that is Christ.  God is sovereignly in control.  He assures me that in this world I will have trouble.  He encourages me to take heart because He has overcome the world.  I know, from His Word, that our life is like a vapor.  I know that all things work together for good (his definition of good) for those that love Him.  And, I know His mercies are new every morning and His grace is sufficient for me.  Oh Jesus, thank you for your Word in my heart.  That I can lean on You and Your promises to me.  My goodness Lord, I thank you for all my life holds that makes me trust and depend more deeply, thoroughly on you, in a way I wouldn't otherwise.  In that way, I thank you for CF.  

But, oh Jesus.  I hold that sweet boy and wonder how long I can.  I breathe him in every day.  I think ahead to his suffering.  Then I remember Matthew 6.  Who by worrying can add a single day to his life?  Jesus knows my days and our son's.

God is merciful that we don't know the future.  But, with CF, we know in part.  Imagine being told five, ten, fifteen, maybe even fifty years before it occurs, that you will have cancer and it will be fatal.  But, you don't know if it's five, ten, fifteen, or fifty years ahead.  You only know that the cancer has begun to grow and is progressive in its growth.  You don't know how many years it will be before you see and feel the affects.  You don't know how long your active battle will be.  You only know you will most definitely see the affects and you will see battle.  Who wants to know that?  Then imagine you're told that you can keep yourself healthier for longer, keep your cancer from progressing as fast, if you avoid something as common as water or air......bacteria!  But, now here's the kicker.  It's not YOU who will have cancer............but your baby boy.  Your sweet, dear, precious boy.

Oh, it's a balance all right.  And last Monday I fell off the beam.  I think it may have shifted under my feet.