Songs of Grace – An Ember Sparks the Flame

Songs of Grace

Well folks,

As I write this, we are approaching week 2 of my brother’s incapacitated condition. I would call it a coma, but it isn’t. Currently, he opens his eyes when he is awake and closes them when he is asleep. He shows physical reaction to pain and occasional tears, yawning, blinking…all things that the body normally does. However, there are no other signs that he is connecting to anything going on outside of his body. His eyes don’t scan the room or focus on anything. He doesn’t respond verbally or otherwise to people’s conversations. Passing a hand in front of the face doesn’t cause a reaction either. It’s like he is there, but not quite.

However, It is truly a condition that causes you to look at him and have hope that this is only temporary. I still see him alive and well inside of this shell. I can’t wait to see the Lord slowly peel back the layers of this cocoon and show us the new butterfly he has been working on. 🙂

Tonight is a big night!  He will be transferred to a long term care hospital, or an L-Tech as they commonly call them, that accepted him due to his recent improvement in breathing. Since his recent tracheotomy, he has been able to inhale and exhale on his own and they have no more need for a ventilator, simply an oxygen tube. VICTORY.

Now we wait. We wait on the Lord.

As I have journeyed these last couple of weeks with my family through this trial, the Lord has been breaking down walls to encourage me. He continues to send me reminders of his grace. In my next few posts, I want to share with you some of those reminders. They are beautiful stories of the faithfulness of a loving God. I am calling them, “Songs of Grace.”

The first is from a friend of mine, whom I haven’t know for very long but who’s grown closer as she has walked through struggles and now through mine. Her name is Amanda Cramer. Here is her story in her words, really the story of a little girl who the world had given up on.

On January 20th 2007, I gave birth to a little girl doctors said would soon die. Her condition was not a surprise. Early in pregnancy, her heart rate was found to be dangerously low. A fetal echocardiogram, a specialized ultrasound of her heart, revealed three severe congenital heart defects. The diagnosis was devastating and the prognosis grim. Upon sharing the condition of my unborn child, I was bombarded with comments such as “Some babies are Rolex’s… she’s just a Timex,” and “Give her a name like Angela, because someday she’ll be an angel watching over you.” Still others insisted if I believed and prayed hard enough, she would be born void of any health problem. In the quiet dark of each night I sat awake, praying and searching the very corners of my soul for some kind of truth in the midst of such chaos and confusion. I didn’t know what to do.

One night the answer came to me just as profound as it was simple. No. No, I would not give her a name like Angelina. No, I would not prepare for my unborn child to die. No, she would not be an angel watching over me. I decided then that for as long as she would fight, I would fight beside her. I named her Ember in my belief that, like a fire thought long burned out, she possessed an inner strength that would burst to life under the right conditions. I chose Corinne for her middle name, after two verses in the book of Corinthians. The first verse is I Corinthians 1:27 “But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong.” I chose this verse because I believed Ember would prove her doctors wrong, that she would indeed live, and that she would live well. The second verse is found in I Corinthians 13:4-8 “Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. Love never fails.” This verse was my wish for Ember- that she would grow to become this type of woman. I also felt responsibility to develop such traits in myself, so that Ember would have a mother she could look to for an example.
On this day, a pediatric cardiology team stood anxiously waiting just outside the delivery room door. Ember was whisked out of the room just as quickly as she had entered it. I caught only a brief glance before she was gone. My dad hurriedly followed the team. Much sooner than I expected, her returned. Handing me his digital camera, I first laid eyes on the sweetest face I had ever seen. I immediately noticed the absence of the oxygen tubes I was guaranteed Ember would require. For the moment, with the exception of the incubator and monitors, Ember looked just as healthy as any newborn- pink, chubby, and full of life.

Ember hadn’t been home a month when she was first rushed to the local emergency room. While taking a bottle she began to grimace and posture. I rushed her to my Dad in the kitchen. As I pulled her away from me I saw her eyes rapidly rolling in the back of her head, her face an increasingly dark purple. Then she was still and void of all color. My Dad performed CPR while we anxiously awaited the arrival of the emergency response team. After several minutes he stopped. I checked her airway, thinking maybe his breath wasn’t reaching her. Her airway was clear, and her chest rose with every breath. She simply wasn’t responding. I stood over my lifeless child wondering “Could this really be it? Is she really gone? If this IS it, will I stop believing Gods hand is in this?” I only had a moment to contemplate this thought as it was interrupted by a sudden high pitched shriek. Moments later, help arrived.

Four hospitalizations and two months later, I watched as Ember’s chest was coated with iodine in preparation from the open heart surgery that could no longer be postponed. Her heart was so enlarged that when laid on her back it collapsed her left lung. Her lungs were so damaged by the condition of her heart that she could not cry without her lungs clamping down, refusing to let air move through. Again, it was suggested that I prepare to lose her. Ember’s crib sat waiting just before the red tape on the surgical wings floor. The tape marked the place where friends and family could no longer follow. I was given a moment to say goodbye. I looked into Ember’s huge, brilliant blue eyes, which starkly contrasted her dusky grey skin. I leaned close and whispered “Baby girl, I don’t care what they think or say. I am going to see you real soon.” Ember was wheeled away then. I stood at the red line for several minutes, feeling strangely at ease.
Over the next several months I was told several times Ember was not expected to live through the night. The following mornings she was always still there, still fighting. Infection after infection invaded her vulnerable little body. Her hemoglobin levels were so low she needed blood transfusions every other day. She had been treated with fentanyl for the majority of her stay, resulting in a lengthy and painful withdrawal. Finally, she was sent home. The smile on her face during the car ride home was only outshone by the smile on her face as she peacefully slept, for the first time in a very long time, in her crib at home.

Ember’s entire first year was a struggle. She was fed through a feeding tube until she was nearly eleven months old. She was constantly hooked to oxygen, a heart rate monitor, and a blood oxygen monitor. Ember first left the house for an outing that didn’t involve doctors or hospitals when she was nearly six months old. She was in the third percentile on growth charts, making her much smaller than other babies her age. I was told she would need another open heart surgery before that fall. I was also told she would have a long struggle to maintain upper body strength, and would fatigue easily all of her life.

Today Ember is a healthy, rambunctious, slightly naughty six year old. As she walks with her shoulders back and chest out she resembles a linebacker. She defied doctors by doing so well she still hasn’t, and may never have, that second operation. She hits the ground running in the morning and doesn’t stop until evening. She is down from the twenty something medications she was on when she came home to just one. She is a very happy little girl, always laughing. If not for the scars from the operation, one would have no indication she had ever struggled the way she did. She is doing better than even my strongest faith could have hoped for.

I think back to a night shortly before Ember turned three. I have decided it is time to explain her condition to her a little more thoroughly. I start off with a question I know she can answer. I ask her if she knows how she got the three inch scar that runs down the middle of her chest. In a happy little voice Ember says “My heart was sick.” I say her heart isn’t sick any more, and ask her if she knows how that happened. I was prepared to explain the doctors and her surgery in kid friendly language. Ember sits up, gently holding my face in her chubby little hands. She looks deep into my eyes. I look back into her, so serious for a child. “Mommy,” Ember says in a very matter of fact tone “God did it.” That answer blew me away. None of us had ever taught her that. No one had. Somehow, Ember knew who was in control of her the entire time. Not doctors, not her mother, but a God who loves Her and who had saved her.

Inspiring Video Montage of Ember’s First Year

This is just one story of a friend who has seen God’s victorious hand in her life, who has gone through struggle and has known God’s healing through it.

We have opportunities to see the grace of God at every turn. Around every corner of our life is another song of grace just waiting to be sung. Sing yours today!

If you have a “Song of Grace” to share, email it to me to: armansheffey@gmail.com or simply reply below. I can’t wait to share how God did a mighty work in your life and encourage others.

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