Matter of Heart
Beads of Courage
Saturday, March 14, 2009
In the early hours as the drama began to unfold and we faced the near certainty that we were going to loose our daughter, I vividly remember the temptation to bargain with God. I fought the urge to make a deal…to promise anything in exchange for sparing Evie.
How arrogant of me to even entertain the idea that our Mighty God could be bribed!
I knew God didn’t want my all compelled by fear or selfish gain. Had I vainly made promises, (Fine, I will go be a missionary in India!!) they would be a burden; merely be scores to keep even. There is nothing I have to offer that God needs. Nothing I can do to earn approval. The relationship He desires with me is unconditional.
This began a period of profoundly deep soul searching. I have contemplated the reality that there is no promise of tomorrow with Evie (or with any of my other children for that matter.) This has forced me to consider what my response would be if our daughter’s life were taken from us. What would the ramifications have on my faith?
My marriage?
My testimony?
I know the sufficiency of grace my God promises would be enough, tho I cant fathom being tested in that way and I grieve for the families who’s little sweet-hearts have been taken to heaven at such a young age. Of course our prayers were for a miracle,
…for Evie’s life to be saved,
…for her heart to be healed.
But, as C and I leaned over her bed in critical care, we faced uncertainty asking for more…that her life (on earth or taken from us) would be a testimony
to God’s Character
to His Faithfulness
to His Sovereignty no matter what the outcome.
My sister recently presented Evie with a unique gift; a visual story that she hopefully will be able to one day tell. A remembrance. A monument of sorts. Beads of Courage is an organization begun for cancer patients and Katherine adopted the idea for sweet Evie. Dozens and dozens of beads strung together tell the story of her year as a heart baby representing the following:
-2 weeks in ICU
-2 weeks in step down
-10 days in various hospitals (Atlanta, Los Angeles, Columbia)
-4 urinary catheter procedures
-15 chest X-rays
-4 blood transfusions
-1 CAT scan
-3 surgeries
-6 times on the respirator
-2 insertions of NG feeding tube
-15 ECHO’s
-1 shunt (through leg to heart)
-1 Life Flight transport in helicopter
-12 EKG’s
I stand in awe of all that God has done in answering prayer. His presence has been a reality through the most trying experience of my life. On this side I look back and and desire to live daily in an attitude of offering my Lord with reckless abandon (out of love and gratitude rather than selfish gain) my all!
….come what may!
Up For Parole
Wednesday, February 11, 2009
After nearly 8 weeks in hibernation, Evie saw her pediatrician today. She gets a glowing gold star. While being sequestered over the holidays was a disappointment, it was a small price to pay for the healthy, babbling, happy toddler she appears to be today. This is the longest she has ever been out of acute care. Her “coming-out-party” is this weekend. A belated 1st Birthday party to celebrate a milestone we have wondered many times if she would ever make! We’re so excited to be decking the halls with pink and welcoming friends and family to join us in giving thanks to God for this life…for this year!
Im putting together a book of sorts for her birthday. Something for her years later to look back on and see how the Lords hand was on her life from the very beginning. Im printing off letters, e-mails, scriptures from this last year from friends and family who have been touched by her life…who have prayed for her…who have seen God do an amazing work. If anyone would like to contribute a letter of blessing to include in Evie’s testimony book, please e-mail me:
smithmandy@mac.com
She has moved out of the “red zone” in her weight too…from a measly 5th percentile to a whopping 10th percentile – progress! We’ll take it one step at a time.
An endoscopy has been scheduled on the 2nd of March back in Charleston at MUSC. At the same time, they will do another PH probe study. The GI specialist felt her results were so severe that he wants to make sure it wasn’t compromised in some way, so is doing another. Im grateful that he is cautiously moving forward. With the information gained and biopsies of her stomach, we will then have to consider the necessity of another major operation on her little tummy.
We were fortunate not to land in the hospital yesterday when big brother Tristan took a tumble off his skateboard. He seems to have inherited his daddy’s insatiable love for speed AND his propensity to accidents and battle scars. Poor guy! The first of many, no doubt!
The Verdict
Tuesday, January 20, 2009
Our follow up appointment was today. We were glad to hear that the cultures of her lungs came back clear. The Pulmonologist then proceeded to tell us that the Dr. running the PH study contacted him and said that Evie’s study was one of the worst he has ever seen.
Gulp!!
Im shocked! This means that all these months, she has battled severe acid reflux. Poor sweet baby!
While we have not seen her vomiting, she has been treated aggressively with medication for reflux for months (just in case) which obviously have not tamed the beast. Hers is silent reflux and it is likely that she is aspirating which has caused her chronic lung problems. Its also conceivable that her “failure to thrive” and poor eating is a result of constant GI pain. This could also explain why she still wakes up 3-4 times a night! Hmmmmm….seems like we could be connecting a lot of dots!
Back to Charleston we go to meet with a GI specialist. We are facing a likelihood of another surgery on her stomach and esophagus. This is another incision on her precious little torso. Its another experience on the dreaded vent. Its another healing from a major surgery.
…..but we’ll cross that bridge when we get there.
For today, Im grateful…very, very grateful for the Doctors the Lord has led us to who have been so tenacious and thorough. So grateful there are answers and a plan to help our baby-doll heal and grow!