Since july 27th we have been waiting, watching, and praying for Ezzy. Her lingering cough finally had an experiation date and our pulmonary doc at Seattle Children’s said it was time. From that date until August 30th Ezzy entered one of her toughest battles since her diagnosis. She was on antibiotics during that WHOLE time and worst of all was put on steriods…STERIODS, the 8 letter bad word now in our family. We were literally waking on egg shells around her, just to survice from day to day. They made her moody, unpredictable, and in an almost constant state of tantrums…sounds like a typical 2 year old right? Well just like steriods make a body builder bulk up…the steriods made her tantrums bulk up. The downside of antibiotics also has challenging side effects as well: decreased appetite, stomach ache, naseous, dizzy, headache, dirrhea…these were just the ones I noticed or was able to get out of my 2 year old’s limited vocab.
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.
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?
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!