28 and counting

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So last week I turned a horrible number that I can barely stand to say, and hate to even type…I don’t know why this birthday is the hardest for me to swallow.  I feel like there is so much I have accomplished in these years and yet still havent…30s are scary to me, for many reasons…one of them being that it is the age when most CFers are in their latter years…Oh, Ezzy I pray that you will not be one of them.

 
I have made mistakes and learned from them, gained and lost friends, grew closer in my walk with God, and daily learn the meaning of uncondtional love and grace that God gives me through the gentle reminder of trying to be a proverbs 31 wife and mother, in this broken world that tells me I can’t ever be.

 
I woke to sleeping in until 9am!!! How on earth was I able to do that after being conditioned to wake up at 6:30 EVERY morning since I have joyfully accepted the title of mom.  Blinds were pulled, pillow over my face, and a loud fan was going to block out the construction noises coming from my little family.  I was greeted with bfast in bed and then had to deal with my first dilemma: whether or not to join the family or to stay and eat BY MYSELF…after a few swigs of coffee and a facebook post I decided to brave the kitchen.  I was serenaded by my family and gladly ate the rest of my cold bfast and soaked in the greatest part of getting older.
 
I had personally set a goal for my bday…since Richard took the day off I decided to try and beat my personal best time on a 5K run through the neighborhood, in hopes of telling “28” to go and eat its self.  I waited until I knew I wouldnt up chuck all the delicious crepes richard made me and got ready to go.  Right when I put my shoes on I had a little shadow behind me with big puppy dog eyes…”mommy can I go running with you?”… “honey, mommy is going to go and run a 5k” (he knows the running lingo since his parents have decided to run every family fun run this town has offered this year) “but mommy, can I just run a 1K then…please…just a 1k and then you can run the rest?1?”
 
How could I say no…so there we were trolling at a pace I would have been embarrassed to run infront of others.  I looked down to see how his little legs and lungs were handling it and he looked up at me with a huge smile and said “mommy, I love you…happy birfday!!”
 
You know what, I may not have beat my personal best time at a 5k that morning but I was still able to say “eat it 28!”  If I get to be blessed with my family EVERY year I get older then bring on the candles

Liver Enzymes

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Liver Enzymes…the 2 words that have haunted my thoughts for the last 2 weeks.  Our little miracle, Ezzy May, has been battling her diagnosis of Cystic Fibrosis (CF) like a champ these last 2.5 yrs. Her strength amazes me, her ability to grasp the severity of her treatments and actually ask for them when she is sick has been a reminder that God knew she could handle this.  The fire in her can be my biggest battle during the day and its on those days that God reminds me He had to create it in her.

 
Her most recent CF appointment was when we found out that her liver enzymes have been elevated the last two times she has had labs done.  It was then that our CF doc told us they were going to start closely watching them and if it continues it would be indicator that she might have CF related liver disease…
 
I wanted to crumble when I received this news.  I try so hard to stay shieled from the grim side of CF in our overwhelming viral world. I hate to hear about 12 or 15 year old losing the batttle in CF and passing on or hearing about the countless CFers living in hospitals awaiting  a lung transplant.
 
Me being the person I am though, immediately researched CF related liver disease and found that it could explain some of  her symptoms I have been seeing in the last few months.  The info I wish I wouldn’t have read was that it is the 3rd leading cause of death in the CF community…
 
So now those 2 words are in my mind daily and I can feel the fear and the many “whys” combined with the “what ifs” being my challenger in the game “follow the leader” because I can’t seem to escape them
 
Now I am having to chew on the very words I have shared with countless friends in their struggles, our church body on sunday mornings and most of all my maker.  I know I serve a big God, I know Ezzy’s story is only in her 1st few chapters, and I know that God has so much to teach me about TRUST.  But most of all I know that HE is GOD and HE loves my beautiful little girl whos days can numbered by our Docs, but in reality are truly only numbered by the one who nit her together in my womb and I am going to praise HIM because I know she is “fearfully and wonderfully made”
 
will you join me in prayer for her, especially since she is battling a narly cough right now?

My Hubby

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so I have been wanting to do a blog for quite sometime and after trying to do so one day during nap time…sweat running down my face, only seeing the color red and tears about to explode…i decided to give up…then I told richard what I wanted to do and he told me to wait just a few weeks after he was done with his thesis and he would help me :)…and well here I am with a website (thanks to my tech savy hubby) and not an actual blog!

 
he just turned in the very paper that has made me an MPA widow and I am so glad he is done! he did all the work and I can take no credit….how can I not be proud of him and is knowledge in the very thing that makes me feel stupid almost daily!
 
My hope is that I will be able to share with you what is going on with our family, how we are facing all the things we have put on our plates and the things that have decided to come unwelcomed…but also to share with you how we are handling Ezzy’s diagnosis with Cystic fibrosis (CF).  We know we have a big God, one who has entrusted us to care for her but also one who when we ask to “search me, God, and know my heart: test me and know my anxious thoughts” HE is always there for us.
 
I hope that this will provide a way for you to know how the Harney family is doing, and most of all know that we aren’t perfect and we are accepting the things we have been given and when we feel like we are finally tackling the challenges we face daily, we know its only because of GOD!