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April 09th, 2021

4/9/2021

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​Meet Emily Long from Helen James Foundation

​At 38 weeks pregnant, my husband, Joel and I heard the words every expecting parent fears, there is no heartbeat. The shock and terror of that moment is truly indescribable. I have never felt so scared in my life. There we were looking at our baby girl, Helen James , on an ultrasound machine. We could see her, but the heartbeat and life that had been so vivid for 38 weeks was gone. In the blink of an eye, Joel and I had lost our daughter.

Helen was a very active baby and moved constantly. On June 4 when she didn’t move after dinner, I knew something was seriously wrong.. We called my OB group who advised us to come to the hospital. I delivered Helen via C-section during the early morning hours on June 5 at Saint Thomas Midtown Hospital in Nashville. From the surgery to the aftermath, the nurses and doctors were simply amazing. I will never forget them telling us that we had a beautiful baby girl. The cause of Helen’s death was never determined. There were no visible signs of issues with the umbilical cord or placenta during the C-section. We chose to have an autopsy, but that also did not provide any answers. I’m not sure that a concrete cause would have provided us the closure we needed, but we knew we had to try to find out what happened.

Following the C-section, there was mention that Helen could be in our hospital room with us. Joel and I could not comprehend what the nurses were saying. The shock, lack of sleep and pain medication numbed my senses to the full magnitude of what was happening around us. But then a nurse brought Helen to our room around 6 a.m. and said that she could stay with us as long as we wanted her there.
The hours went by, and we did not want to let her go, so the staff set up something they referred to as a cooling blanket, which was set up in a crib and was so discreet you would never have never known it was there. This Cuddle Cot became a lifeline to our daughter. Over the course of three days, our family and friends traveled from all over the country and as far as Panama where my sister lives to come and meet Helen James. Our hospital room was filled with emotions – tears and sadness and heartbreak, but there were also moments of laughter and love. While the experience was beyond painful, it was also one filled with hope.

The Cuddle Cot gave our family and friends a way to both rejoice and mourn over our daughter in the same moment, to hold and kiss her and to love her. We are so thankful that Saint Thomas Hospital had a Cuddle Cot, and that we were given this additional time with Helen James. We believe it was a crucial part of our acceptance, grieving and healing, and we cannot imagine our situation without it.
We were sad to find out that very few grieving parents will have access to Cuddle Cots. The device is practically unavailable in most hospitals, despite 24,000 babies being stillborn in the U.S. every year, which is 10 times as many deaths as those that result from SIDS. In our case, the Cuddle Cot was donated by a family who had been in a similar situation in the past. A huge part of our healing process has been having a mission — somewhere to funnel our grief and confusion and love and energy.  Joel and I decided to honor our daughter by creating the Helen James Foundation. Its mission is simple: To support grieving families who are experiencing a pregnancy or infant loss. We have focused on Cuddle Cot donations across the state of Tennessee and in Chicago. Additionally, we donated funds to the Saint Thomas Midtown Hospital to help with the construction of a new Family Bereavement Room. This room provides families who have lost a child  a place inside the labor and delivery unit to spend time with their baby. They will be able to give their child a bath, dress them and create hand and foot imprints keepsakes in a private space. We plan to continue raising funds for Cuddle Cots and also to support families through donations for grief counseling and support groups.

​ We recently added infertility to the foundation’s mission in January of 2021. Our hearts have been heavy as we have walked beside our friends who have experienced this. Our hope is that we can help raise awareness and support and be advocates for those experiencing the difficult journey of infertility.

Joel and I will always cherish our first-born child and forever remember the ways that Helen has taught us to love and hold tightly to one another. We hope our story brings much needed attention to this rare, but life-changing Cuddle Cot device that gives grieving parents like us the gift of time. We also hope that we can be a source of support for parents experiencing pregnancy and infant loss or for those who are hoping to become parents.
We love you always and forever, Helen James, and we are so thankful to be your parents.
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CAROL’S STORY

3/5/2021

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​PHONE CALL
 
I was sitting in my absolute favorite place… toes in the sand with nothing but the expanse of the emerald waters of the gulf coast before me.  To my right, my husband was drifting in and out of sleep.  All around me the sound of my four kids and their friends enjoying the first day of our summer beach vacation.  
 
My cell phone vibrated and my gynecology office number popped up.  Ah, the obligatory phone call to inform me that everything looks good, but because of my dense breast tissue I’ll be receiving a letter to notify me.  
 
I answered and Brandi explained, “something...something...anomaly...can you come in first thing Monday for an ultrasound?”  
 
“Monday...ummm no. We are at the beach for the next week.  You know I have dense breast tissue so I’m sure it's just ummm dense breast tissue.”  
 
Brandi asked me to hold for one minute while she spoke to the doctor.  She got back on the phone and explained, “the doctor would really like you to come back in as soon as you are able.  Does the following Monday at 8 a.m. work?  There is a small mass in your left breast that wasn’t there on your last mammogram.  When I saw it, I pulled your previous mammogram to compare to make certain it was just dense breast tissue, but it is a change that is of concern.”  
 
All I wanted to do was hang up the phone so I responded, “Next Monday is fine. Thank you.”  
 
Anomaly.  Mass.  Did she say anomaly or mass?  I should have asked that….should I call back?  No. It's just dense breast tissue.  I just had a mammogram a year prior.  I’m fine.  It's fine.  Breathe.  Don’t panic over nothing. I looked over at my husband.  The steadiest person I know--until it comes to me.  No. Don’t wake him.  Breathe.  I closed my eyes, but in that moment I felt the Spirit: open your eyes Carol.  And, when I did, I saw the light sparkling on the water.  I marveled at it’s deep jewel tones as it spread to the horizon, but up close the same water was invisible because it is absolutely crystal clear.  I dug my toes into the sand and felt the warmth of the sun. I heard my kids laughing..maybe bickering...and I praised God for his goodness. I thanked him for surrounding me with the evidence of His majesty and my blessings.  I thanked him for taking me out of my panic and reminding me that even if the worse lay ahead...I can count it all joy.  In that moment, I surrendered my circumstance to Him.  At that moment, I knew for the next week this was a private conversation between Jesus and me. Time enough for everyone else’s concern and worry.  At that moment, I wanted to focus on God’s abundance: a week surrounded by his beauty, my family, and His peace.
 
The week that followed was a blur of biopsies, mammograms, a breast mri, radiologists, oncologists, breast specialists, and surgeons. The initial plan:  lumpectomy to type and stage.   
 
My breast cancer was caught early (Praise Jesus), but the lumpectomy was more complicated than thought: the mass was not only larger than anticipated, but they found multiple other areas of concern (11 to be exact!)  As well, lab work revealed I carried the BRCA1 mutation.  The breast specialist went over my options, but was quite clear that a total bilateral mastectomy was unavoidable.  Chris and I prayed. We made the decision to get everything removed immediately, wait for the pathology report, and then take the results one step at a time.  
 
As I write this, I am 1 ½ years cancer free. Reconstruction is almost complete (still waiting for some tattooed nipples….) and I am getting better at not bashing into things with a chest I cannot feel.  
 
My story, however, is not about breast cancer, BRCA, mastectomies, or recovery.  So many courageous women have fought much tougher battles and shared their hearts to encourage others walking that path (myself included). My story is not about what I lost to cancer. I realized early on my story is about the abundance I have in Christ. 
 
Throughout my journey I wrote to God (I am a writer who frequently types her prayers and conversations with God). Today, I felt moved to share three of the entries:

  1. It Begins: written waiting for the lumpectomy pathology report (the waiting was the worst, ok, maybe the drains, no the tissue expanders...it's a toss up)
 
The last month or so I’ve struggled to trust. My constant internal loop:  I will trust.  I will trust no matter the results.  In the morning when I wake up and in the evening when I go to sleep:  I will trust.  I will trust.  Trust is to relinquish control...it's not easy.  Especially for a control freak like me.  Honestly, my trust in this sounds more like: Jesus take the wheel! But I’m just gonna backseat drive in case I don’t like where we are going. Lord, give me a heart that turns “what if” to EVEN IF….
 
In my brokenness, I hear the Spirit whisper: BREATHE. BE STILL. SURRENDER. When I do, each time I do (because let’s face it I’m a multiple times a day arms crossed, foot tapping, obstinate girl), I feel my defiant spirit softening.  I feel my unrest settling.  I feel my fear receding. I feel His strength propping me up. I feel His peace filling every inch of me.  He reminds me:  my hope is secure.  
 
In the stillness...I remember:
 
His Will...my protection
His Word...my armor
His Grace...my abundance
His Spirit...my helper
His sacrifice...my salvation
 
In my weakness, His power is made perfect.  I remember the words of a dear friend...Jesus is not just a life vest; He controls the waves.  I know with Christ, I have more than I will ever deserve. So, I will trust.  

  1. Mastectomy Day: waiting to be hooked up to IV drip (breasts covered in blue and red sharpie making me feel like a butcher diagram, but super attractive compression knee socks and an inflatable raft laid on top of me to keep me warm)  
 
As I face this uncontrollable circumstance filled with uncertainty, I can choose to drown in my fear and self-pity or I can rise by delighting in your sufficient grace. So God, I thank you. I am simply overwhelmed by your goodness and desire to be near.  You have protected me, strengthened me, and provided precisely what I’ve needed to take the next step in this journey, one I truly don’t want to take. You have given my spirit peace in the waiting. Evidence that you hold me in the palm of your hand. This morning I wrote Psalm 139 on my hand. To remind me of your faithfulness, goodness, and steadfast love when I feel uncertain and unsteady. I know just as you have carried me to this moment, you will continue to carry my broken, battered body.  I know EVEN IF the worse news comes, you’ve got me and all those I love. 
 
Please God bless all those that have covered me in prayer and showered me with such love that despair withered. Please stay near to Chris and our children while they wait. Please bless Lisa and thank you for having her, one of my prayer warriors, in the OR with me managing my anesthesia so my husband and children can have a bit more peace. 
 
Thank you for your steadfast love...I will trust.  

  1. The Other side: (boobs implanted, scans clear, no longer subsidizing the hospital parking garage)
 
3 surgeries in 5 months. After a journey, I never anticipated traveling and one I am blessed to come out on the other side with more time with Jesus, more time to share the goodness of God, and more time to love and be loved, my thought:  what precious treasure is found in the midst of trial. So many lasting gifts from God to be thankful for, but two that stand out. The first treasure was time in stillness. As a mom to four--a Martha through and through--this trial forced me into stillness.  Forced stillness of waiting endlessly in doctors’ offices and weeks (that turned into weeks and weeks) of being confined to bed rest (some obnoxious healing complications). In that forced stillness, I sat at His feet, immersed myself in His Word like I’ve never done before. The more I sank into His Word, the more it filled me to overflowing.  The more I realized the beauty of the simple truth: God’s Word is living. His Word breathes light and life into the darkest and deepest pits. His Word edifies as it comforts. It convicts and it transforms. I don’t know what God has planned for me, but I know these past months were a gift to teach me to surrender more fully and cling more desperately, a gift to remind me when God is the greatest desire of my heart it is well with my soul. A gift that every “what if” can be used for good and for His glory.  The second treasure: this past year taught me with Jesus I have all the abundance I will ever need and far more than I deserve. That time not sharing Jesus is time wasted. I want, with all that is within me, to bless the Lord with my life. I want to burn with passion for Christ. I want every moment I am given in this fallen world...wrapped in my brokenness...to be used for His glory: because of who He is, all that he gives, and all that He did through Jesus.  
 
My breast cancer journey ignited my faith in ways I never imagined possible.  But, then again:
Through Christ all things are…  He truly trades ashes for beauty.
 
“But seek first his kingdom and his righteousness, and all these things will be given to you as well.”  Matthew 6:33
 

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Savannah's Story

2/11/2021

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We are a family of 5, although the outside world only sees four.  I am a new mom(again) even though my arms are empty.

On the morning of August 17th, 2020 I was almost 33 weeks pregnant with our daughter, Saylor, when I noticed she wasn’t moving like she normally did.  I decide to go in to see my OBGYN just to check things out, even though I had been there a few days prior, and everything looked great.  Because of covid restrictions, I went alone, and all alone on an ultrasound table, I got the worst news a mother could get. There is no heartbeat.

How could this be? Her nursery was already decorated with bright pink flamingos and monogrammed art.  I already had a stash of matching outfits and bows for her and her sister. My 3 and 4 year old were anxiously awaiting their baby sister’s arrival with plans to help out with feeding her and playing peek-a-boo.

How could this be? Her nursery was already decorated with bright pink flamingos and monogrammed art.  I already had a stash of matching outfits and bows for her and her sister. My 3 and 4 year old were anxiously awaiting their baby sister’s arrival with plans to help out with feeding her and playing peek-a-boo. 

And just like that, our daughter would never be coming home.

What followed could only be described as the “worst case scenario”.  After giving birth to Saylor, which was a heartbreaking, life-changing experience, my body started shutting down.  I went into DIC, which is where your blood stops clotting, and my kidneys shut down.  Statistically, most women don’t survive this kind of trauma.
 After 6 units of blood and plasma, 10 days in the hospital, half of that time in the ICU, a dialysis port surgery, and countless tears, I was able to leave the hospital to continue my recovery at home. They wheeled me out with a small box of memories on my lap, instead of a swaddled baby.

Our lives are forever changed, but not all of it is bad.  I have never felt more surrounded or loved in my lifetime than I did right after Saylor died.  So many people, some we had never met, were lifting us up in prayer.  The lyrics “it may feel like I’m surrounded, but I’m surrounded by you” felt so real.  Our community, our church, the women of faithfully restored, were the hands and feet of Jesus that were surrounding us in our greatest time of need.  Countless meals, toys for my kids, beautiful memorial gifts were dropped off at our door daily to remind me that we were loved. That my baby was loved.  To this day, I’m not sure how we survived the first couple weeks, and all I can think is by the grace of God.

As Christians, sometimes we have this false sense of protection that nothing bad can happen to us because the Lord is with us, and that’s just not true.  Bad things happen to goos people all the time. I am not alone in that regard.  But God most certainly DID promise to walk through the fire with us, and I have felt his presence, every step of the way.

I’m not sure what the future holds for our family as we grieve and grow and move forward while always carrying Saylor in our hearts and saying her name out loud, but I do know who goes with us, who goes before us. Who’s love is unfailing and who is near the broken-hearted.  Jesus.
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Tianna's Story

12/1/2020

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Meet Tianna from Tennessee. A domestic violence survivor and advocate of Mothers against Murder. Just four short years ago, Tianna witnessed her son being murdered. She held her son Anthony as he went home to Jesus. Knowing she wanted to make a difference and turn her pain into purpose she started seeking assistance to go back to school to help others in similar situations.

During this time, Tianna met a new friend that changed the trajectory of her life and set her on a new path. That friend, a Faithfully Restored supporter, referred us to Tianna and the rest is history!

​Currently, we have paid for her first year of schooling at a local college where she is going back to get a degree in counseling. And, with your help we would love to continue to help Tianna and so many other women like her. Join us!
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#AmazingAva

4/28/2020

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Written by Amie Martin

October 19, 2015 - Ava has been in the Cardiac ICU for 70 days, and 63 days wait listed as a 1A heart transplant...seems like a long time but there are children that have waited longer, and there are children that still wait.  People always say to Brian and I, "you're so strong" or "I don't know how you are keeping it all together?"  It's not easy, I don't feel strong...you trudge along because the alternative is not even worth mentioning.  I pray Ava isn’t suffering, and I pray she will leave the hospital with us with a beautiful new heart.  We've been exposed to a whole new world of fear, relief, heartache, triumph, friendship, isolation, sadness that makes your heart just plummet into your stomach, and joy that can not even be put into words.  I've waited outside my daughter's hospital room door to embrace a fellow heart mom when the news came that her 18 month old son would finally get the gift of a new heart and then weeks later sobbing in that same embrace because there was nothing more that could be done to help their sweet angel.  I've crouched in the corner to watch in awe a champion of a human being walk almost run down the hospital hallway after only receiving her new heart a week prior.  We've seen doctors, nurses, therapists, and administration wipe the tears away from their faces as they walk away from a patient's room one last time.  A child they have looked after for months on end, and when they come in for their next shift that patient will not be there.
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It's exhausting, but we stare at the photos of Ava in all her beauty plastered all over her hospital room...we see Ella and Ava light up with joy and screech with excitement when they see each other over FaceTime...we feel the generosity of so many of you...we love viewing the #wherewillavagonext photos...we hear about and meet people with success stories and amazing qualities of life when all of this is behind them...and we are recharged by this hope and light that we see at the end of the tunnel. We don't even begin to think that our situation is the worst there is out there. It sucks, there's no sugar coating that...some days are better than others, but we have one hell of a fighter in our #AmazingAva. We don't waiver in our belief in God or her for one second. She is stable, still intubated, and her team knows that she walks a tight rope. So we wait, we welcome the good days and hunker down on the bad.

We have the privilege of spreading awareness about congenital heart disease and pediatric organ donation. This is just the beginning of a lifetime of educating all those that care to gain insight and learn about a disease that effects 1 in every 100 children. There is no filter, no prejudice, no socioeconomic barrier. We see children and their families struggle from all walks of life. With continued research and medical advancements these children have the opportunity to become adults, and families get to raise their child that quite possibly they were told they still had time to abort before 25 weeks gestation.  

Thank you to anyone who has taken one moment to think about our family and Ava...if I haven't been able to thank you personally...Thank You for helping us get to where we are today.  I/We can not wait for the day that we get to spread the news of Ava getting her gift.

I wish I would have written more down on paper during this journey.  In all reality, we were surviving one day at a time, so I’ll give myself some grace in that it wasn’t my first priority to blog and document my feelings and chain of events during this time. It all began at our 20 week ultrasound. Since it was our second child, I told Brian he didn’t need to come with. I figured it would be a quick in and out. I knew something wasn’t right when the radiology tech was measuring the chambers of the baby’s heart over and over again. Crazy thing…it was a radiology student doing the exam. She kept her composure, but I knew something was up. She left the room at one point to get her supervisor and instructor. The instructor came in and measured the same thing over and over again. They asked me to go to the bathroom and empty my bladder to get a better position of the baby. That was their opportunity to discuss I assume. They asked me to head back up to my doctor’s office where I waited for what felt like two hours for the review and diagnosis to come from the radiologist. I remember feeling anxious yet calm. My OB doctor brought me back to an exam room and broke the news. I didn’t cry. I felt a sense of hope in my doctor’s eyes. Maybe she’s delivered this speech enough times before. Additional testing would need to be performed. I got in the car a bit shocked and frozen in my thoughts. I called Brian to give him the news but couldn’t get the words out. He worked a few blocks away, so I drove to pick him up…and so it begins.  
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Our little girl was diagnosed with a congenital heart condition called Hypoplastic Left Heart Syndrome. Further testing was completed during pregnancy to confirm the severity and other malformations of her heart. Within two weeks we had a fetal echocardiogram. Once again, my nurse brain told my husband not to come; thinking it would just be testing not a conversation of diagnosis and prognosis. Wrong again. The specialist saddled up in a small exam room with me and laid it all out. We were at 23 weeks gestation by now. Hypoplastic Left Heart Syndrome confirmed. A narrowing of her aorta confirmed. Ventricular septal defects probable. The medical team is required to inform us of diagnosis, prognosis, and all of our medical options. I was told we could abort our pregnancy before reaching 25 weeks gestation in the state of Illinois. I was told we could carry to full term, and she would most likely struggle. I was told we may have two minutes with her or a lifetime. Surgical intervention would be absolutely necessary to help her survive, and he gave me a short synopsis of what those procedures were. Lastly, pediatric heart transplant was discussed as a possible last-ditch effort to sustain life.

We didn’t even think twice about our options. God created this life, God created her, God would see her through. Brian and I get asked all the time if it were better that we knew so early on, or if we would have rather not known the fate of our unborn baby. Brian and I would not have changed our path for anything. It was a path that was already laid out for us. We had faith early on that Ava would be okay.  We were able to research her diagnosis and interview with a team of specialists that would be caring for her after she was born. We moved into a tiny 600 square foot apartment two blocks from the children’s hospital a few months before Ava was born to keep life as local and simple as possible. The hospital we chose was Lurie Children’s Hospital of Chicago, and they gave us nothing but hope that Ava would prevail.  

Ava was born on July 16th, 2014 at 11:18pm. She was perfect. Apgar scores of 8/9. There were a million people in the room waiting for you know what to hit the fan, but nothing. Stable. I was able to hold her for about five minutes.  There was a peace and calmness about the room. I didn’t notice that everyone, but Brian and I, was holding their breaths. And whoosh, they swept her off to the NICU holding area with Brian in tow, to get her looked over before sending her to the Cardiac ICU at Lurie Children’s Hospital next door. About 2am they let me sneak over to the NICU holding area in a wheelchair to see her again before being transferred. I think I slept for 4 hours in my assigned room before heading next door to the 15th floor of Lurie’s to see my girl. I’m pretty sure I wheeled myself over there in a wheelchair. It is a little blurry, but I’m pretty sure I didn’t wait for help or permission. The hospitals are connected by bridges, so it’s not like I was the crazy person in a hospital gown roaming the streets of Chicago. I may have gotten a few strange looks though. Adrenaline is real. I was about 7 hours out from pushing a baby out, and I’m cruising the halls of a massive hospital complex to find my child’s room a city block away. I didn’t crash until 1 week later when Ava went down to the operating room for her first open heart surgery.

Ava was in the hospital for only 2 weeks. She had open heart surgery at 7 days old to repair her aorta. She thrived up until 6 months of life. This is when her next open-heart surgery was scheduled. Her left ventricle was showing signs of growth, so they decided to try to repair her septal defects rather than perform the Norwood-Glen-Fontaine procedures. Unfortunately, our girl struggled, and she was failing to get off of bypass during this surgery, so they had to make a couple adjustments to their plan. Too much pressure was building up inside the chambers of her heart, and the pressure was backing up into her lungs as well. They did what they could do to stabilize her to get her off of pump, but from this point forward we were on a downward slide towards heart failure. Ava was finally discharged home after 6 weeks of being in the hospital. Our hope was being crushed, but our faith was still strong.

For the next 7 months at home, we watched our baby girl deteriorate. She had little to no strength to sit up and keep food down. She would sleep 17 out of the 24 hours of the day. We fed her through an NG tube, which is a tube that goes up her nose, down her throat, and into her stomach. Her crib was in our bedroom, and I slept with my head at the foot of the bed so that I could leap up as soon as I heard her vomiting in her sleep. We would lay 3 to 4 blankets down underneath her, so we could just peel one layer back at a time after each episode.  Routine visits with the cardiologist was painful. I knew they didn’t want to speak the words but there wasn’t much else they could do until she really fell off the deep end. I begged for a G-tube from her specialists to remove the tube from her nose and throat. Finally, on her first birthday, July 16th of 2015 she had surgery to place a G-tube. This was a boost of hope that maybe life would be a bit more manageable at home. It was one day at a time still.  Surviving on multiple levels. Physically. Emotionally, Mentally, and Spiritually. It is all a blur.

An appointment was set to consult with Ava’s surgeons to discuss next steps.  Her chart had been sent to Boston Children’s Hospital and John Locke, MD (the head of pediatric cardiac surgery in the best cardiac children’s hospital in the world) was reviewing her case to see if they had any thoughts on how they could help her.  The decision was made for Ava to go to Boston for her next minimally invasive cardiac surgery because the team did not feel confident that she would survive another open heart surgery.  We just had to put our faith in whatever was to come.  On August 18th, 2015, I took Ava for a cardiac follow up appointment to do her routine imaging and discuss the teams plan for her next heart surgery.  Similar to the 20 week ultrasound during pregnancy, I could tell the radiology tech was not at ease during the ultrasound.  I was distracted by a giggling, playful one year old though.  In all of Ava’s struggles, you would have never known she was sick.

We went back to the exam room to wait for Ava’s cardiologist to discuss Boston a bit more in depth. I was distracted in the exam room again because Ava was laughing about something silly, and it kept me from the unease that I was feeling. Ava was far from well, but Brian and I were doing our best to keep medicine and food in her. We were not in denial that she needed more surgery to try and optimize her sick heart, but I don’t know that we ever allowed our thoughts to believe that Ava would be in heart failure awaiting a heart transplant. As her doctor walked in the room, I knew she was about to deliver a blow. She was calm but stated we needed to make our way over to the hospital and get Ava admitted so she could fast track her to the cardiac cath lab. The ultrasound revealed Ava’s left ventricle was no longer pumping. Her little pumper had had enough. She was in heart failure.
On August 18th, 2015, when Ava was 13 months old, we were told that she was in heart failure and her only hope was to wait for the gift of life, a gift that another family would need to decide to give her when hope was pulled out from under them. She struggled but fought every second. She was on a ventilator on and off at the beginning, but when arrhythmias threatened to take her life the medical team decided to keep her intubated until that gift of a second chance at life would come.

Ava waited 111 days before getting “the call.” She was on a ventilator for 68 of those last days. Awake and playing through some, sedated but awake through others, and paralyzed in a medically induced coma to help her rest during shaky times. Twice we gathered our family and the chaplain and prayed over her. My aunt, who is a Catholic nun, was in Chicago on a layover the first time Ava was steps from heaven. We sat on the couch in Ava’s room together and she asked me what I needed. I said to her, “I just want to pray. Can you help me pray?” We prayed the rosary together. The next time Ava took a turn for the worse, I laid my head next to hers, held her cold hand and prayed. I hope I never repeat this to her again. I prayed and asked God to take her if she was suffering. I whispered to Ava that it was okay if she couldn’t fight anymore. Never did I doubt Ava or lose faith that everything would be as it should. Whatever God’s will, we accepted it. Hope and Faith are powerful things. Jamie and Daniel Heard have taught us even more about the meaning of these words…

    On the morning of December 14th, 2015, we received the news that Ava would be receiving her heart that day. We didn’t know at the time, but Jamie and Daniel decided that weekend to donate William’s heart. Our girl Ava would be the child to receive the most beautiful gift from the sweetest boy. Jamie and Daniel, you have given us Hope, Faith, Love, and Life in your darkest hour. You took your tragedy and selflessly gave us a gift that all the money in the world cannot buy. You poured your love and faith into your child and now that overflows onto us. Although I know God has always had a master plan for our Ava, I believe that He gave you the strength to help Him carry out that plan. Your sweet William is “Alive in Heaven Now,” and your son has given our precious daughter the chance to live here on earth for whatever remaining years we have with her. As you told me, you asked your beautiful William, “Who made you?” and he would reply, “God made me!” The same goes for Ava the first time around and now a second time, “God made her.”

We look at photos of your family…the joy, the love, the faith, and your hope for a new home for your beautiful baby boy’s heart. Thank you for giving us joy, showing the world how to love, strengthening our faith, and giving us hope for our sweet Ava. Thank you for giving us the ability to honor your son every day for the rest of our lives.  Thank you for having the courage to reach out to us during a time when most parents would shut out the world because of their unending pain and grief. Thank you for reminding us that there are people like you and your family in this world. Thank you for the second chance at life you have given Ava. God put this spirit of survival and perseverance in her and all of us.
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My Colander Year: Finding Full From Empty

1/30/2020

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Written by Sarah B. Miller
“You’re moving where?!” was something we got used to hearing before leaving our home state.  We’d grown up there, made a life there...everything and everyone we knew was there. We had no reason to leave...until we decided it was time for another adventure.  Prior to this point, we’d experienced a lot of “big life” adventure, sure. Got married, had four kids in just over four years, bought a couple houses. Big life stuff.  Blessed beyond measure. We got to a place, though, where we’d felt a shift in what our future was going to look like. He was tired of traveling and being away from home...felt disconnected from his family.  At least that’s what he told me.

Before our upcoming week’s vacation together, to celebrate our 11th wedding anniversary, we’d dream about what it would look like to live somewhere warmer within a day’s drive to visit.  After a few ideas, we’d come to agree that Tennessee would be perfect! Not a far drive, still has the seasons, a good half-way stop to the beach...the list went on. So, we booked our coming vacation to stay in the Nashville area.  Boy did we ever fall in love. The weather, the people, the music, the food...ahhhhh, this could be home!
I’ll tell y’all why I was excited...a little back-story, if you don’t mind.  I’d known my husband since the 4th grade. I knew his family, I knew his friends.  He was funny, kind of a bad-boy...a charmer. We hadn’t really dated until we were 23 years old, after bumping into each other in our hometown.  He was the same. Funny, kind of a bad-boy...a charmer. And I? I have been doomed to believe the best in people. Always have. Always will. It’s not something I’d like to change about myself, however a little discernment never hurt anybody...
We were together for close to two years before moving to Detroit.  He’d gotten a job opportunity that was hard to pass up, and we couldn’t wait to jump!  Adventure. For the next 13 years we’d live in the Detroit area. Found a great church, met some great people, bought our first house…all the things.  
We were married 18 months before having our first child.  Then, the second...then a stillborn (our baby Trace, for whom the kids still send up birthday balloons every year)...then our third child...then the fourth.  All within the first 6 years of marriage. A whirlwind. Meanwhile, he was working from home. He’d had four jobs up to this point...eight total W2’s, and two 1099’s by the time we’d left for Tennessee.  It was a crazy time.
I was good at being at home with the kids, while cheering him on.  He was good at providing well for our family.
Ok.  Enough back-story...
I think it’s easy to see why I was excited, yes?  By the time we'd moved here, our youngest would be in full time school.  Hallelujah! I was SO excited for this next chapter...our new adventure. I was going to have more time with my husband too!  Day dates?! Glory. I was happy for the possibility of falling in love with the man I’d married, and believed in for so many years.  I was happy that he wanted to be home more...that we could enjoy this new adventure as a family. The Miller 6-pack.
I’d just assumed over the years that he was just really stressed at work.  He was juggling a lot after all. For the better part of the last four, almost five years, he’d worked a full-time job and did consulting on the side.  That should’ve been a sign. But I trust. I believe. And, I encourage. On this side of it now, I’d even go so far as to say- I enable.
For years, I’d accommodate.  I’d tried making things as easy as possible for him.  He worked so hard, and provided so well. Sure, I managed the kids and the home, but I wanted him to know he was appreciated.  I wanted to contribute in more ways, to free him up to do what he had to do. I’d make every effort to make his home his haven...his sanctuary.  That’s hard to do with four kids, and two dogs friends! I’d make it a priority to date him every other week...I made HIM my priority when he was home.  And, I’d do my best to send encouraging texts, or call with a pep talk every once in a while, when he wasn’t. It didn’t feel like a lot because I enjoyed doing it.
Still, the idea that our life would include our family growing and experiencing together enlivened me!  Adventure with my favorite people?! Yes please.
Three months in, though, things weren’t going the way I’d anticipated...the way I’d hoped.  He’d needed some time to build his business here. “To build a name for himself.” We were in a new place, where he’d had no prior connections.  Ok, sure. But… Do you really need to stay out every night...overnight two to three nights a week? Even in Nashville? Just thirty minutes from our home?
Throughout our relationship, I’d done my best to manage the manipulation and control tactics.  The lure and drop techniques. The “you’re the best thing that’s ever happened to me and our kids” to “have you taken your meds, Sarah?”  If you don’t know what Gaslighting is, look it up. That’s what I’d lived for 16 years. Probably longer, since I’d been a believer in people my whole life...one man after another who were wrong- yet, I’d convince myself I could make them right- for me.  I could love and encourage them enough to be good for me. Because I was good for them. And I was. I was the perfect girlfriend...the perfect wife for a narcissistic sociopath.
For so long, people would say things...insinuate things.  And I’d defend him. I’d make everyone, including myself, believe that he was thinking of us.  That we were better than ever. I knew the truth, though, somewhere deep inside…I knew. But, I wanted THEM to love him...accept him...respect him once he’d finally become the man I always knew he could be.  I was confident God would redeem our marriage. Confident it was His plan.
I didn’t always know God like I do now.  I was already married with two kids when I met Jesus for the first time, in a real way.  He showed up for me when I lost Trace. He showed up when no one else did. My husband was traveling then too, and was in Boston at the time.  God continues to show up. He’s never left. And, so, I trusted Him when He said to move to Tennessee. And I led the charge. I thought I knew why He wanted us to move here, but I couldn’t have been more wrong.  No surprise there, right? His ways our higher than ours. So are His plans.
What I was certain would be unifying for our family turned out to be the uncovering of our brokenness.  We’re all broken, I know. And I embrace it most of the time, but this was a whole new kind of broken. One I didn’t sign up for.  No one does.
Yet, in His sovereignty, He knew the man I married.  And He knew me. He knew it would take something drastic to uncover my reality...our reality.  He knew I’d only see the best, only the possible, if something didn’t disrupt the mundane. Under the guise of adventure, He allowed for my absolute horror to be realized.  And He was there with me the whole time.  
You see.  In Detroit?  We had many, many people who loved us.  Back home too. I personally had many friends there, who I love like sisters to this day.  If we hadn’t moved hundreds of miles away to unify our family...if he hadn’t tried to isolate me to that end, from getting involved at church, or making new friends in our community...I’d have gone out, instead of UP.  I’d have gone out to my friends and family, seeking validation when I’d discovered his multiple affairs. I’d have gone out to my people when one of his disgruntled girlfriends had reached out to me to share about his other life in Michigan...with another woman, in another house, just a few miles from our family home.  They had a dog together, and a business. And I just thought he had a drinking problem! But. I went UP, because out wasn’t an option. After I hit my knees, and then my face? I reached UP, to God. And, in my nightmare? He gave me unrelenting peace.  
What should have been the loneliest time in my life, has ended up being the most refining time.  The best things in life can be realized out of pressure, or pain. When you trust God, they can become your purpose.  Ever wonder about your purpose like I do? Wonder what you’re made of? Well, God doesn’t...He’s always known. And, at some point He will show you…

While it’s all still very fresh, we continue to trust in His perfect plan for our family.  I never saw divorce in my story. Remember? I was confident in redemption! Certain of it.  Well, I am redeemed. My children are redeemed. And we continue to pray their dad be redeemed too.  We have tough days, but we trust in our God to help us choose joy. To sing His praises in the middle of the storm.  He’s worthy. I am not. And yet He still loves me. He has romanced me like I’ve never been before. He has shown me peace, and hope.  And when I’m floundering, and feeling like the worst mom in the world...that I’ve failed my children beyond recovery? Hope remains.  
Always hope, dear one.  Always hope. He’s faithful.

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Place all your Hope in Jesus

11/30/2019

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It was our 20 week anatomy scan. The look on the doctors face said it all. He closed the door, sat down, and proceeded to tell us that something was wrong with our baby boy. The words came out in slow motion, but they’re etched in my mind forever. “The ventricles of his brain are measuring much larger than they should be, and we suspect he has Ventriculomegaly or what is more commonly known as Hydrocephalus (water on the brain).” Those words rocked me to my core and set the stage for one of the most difficult battles of my life. My name is Leah Deason, child of God, wife of Prime, and proud Mama to my 22 month old little warrior, Ozzie.

Just as we were processing the news that our son would have life long health challenges that accompany a hydrocephalus diagnosis including brain surgeries, risk of infections, and developmental delays, my water broke at 26 weeks due to Preterm Premature Rupture of the Membrane, or PPROM, landing me in the hospital on strict bedrest. Two weeks later, Ozzie couldn’t wait any longer, and he was born on December 31, 2017 at 9:35 pm. He was a very tiny, 3 lbs 1 oz “28 weeker.” We spent the first 3 1/2 months of his life in the NICU where he proved over and over again that he was a fighter. He struggled with breathing issues, feeding challenges, and fought off two viruses that almost took him from us. Grief hit me hard during those long days and nights in the NICU. What should have been a joyous time was anything but, and the physical, mental, and emotional exhaustion consumed me. Then after 93 days, our prayers were answered, and we were finally able to bring our baby boy home. 

Unfortunately, our time at home only lasted a few short months because Ozzie started experiencing complications from hydrocephalus. His head circumference rapidly increased due to a blockage in his brain, so fluid started to build up resulting in extreme lethargy and the inability to latch and take a bottle. We knew it was time to intervene, so he had his first brain surgery on June 21, 2018 right before he turned 6 months old. As if that wasn’t enough for my weary heart to process, Ozzie started having seizures the following day while in recovery. Of all the challenges we anticipated, epilepsy was never one of them, so to say we were devastated is a huge understatement. Ozzie was transferred to the NICU for another grueling 49 day stay. Even though I knew what to expect with daily NICU life, this time was different. Ozzie struggled with so many things that most take for granted. He wasn’t making progress and was actually regressing developmentally, and it was the first time I allowed myself to accept how truly sick he was. 

The doctors told us Ozzie would never walk, talk, or do anything on his own, and that we should meet him where he is, take him home and just love him. He was only 6 months old, so how do they expect us to give up hope and stop trying? We were dealt blow after blow, and it felt like the world was crashing down around me. Ozzie was diagnosed with a very rare and catastrophic form of epilepsy called Infantile Spasms and several other types of seizures. Infantile Spasms are considered a medical emergency due to the impact they make on a child’s brain during an extremely critical time in development, and if left uncontrolled, the prognosis is poor. Ozzie hasn’t gone one single day without having multiple seizures, and some days he has hundreds. He’s failed 10 medications and counting and is now considered to have drug resistant epilepsy with very little chance of us ever being able to stop the seizures. We now have to manage them the best we can knowing that his type of epilepsy is debilitating and progressive. All of the skills he’s worked so hard to gain are slowly slipping away. Epilepsy is a thief, and it steals a little piece of him every single day.

We spent 172 days and half of Ozzie’s first year of life in the hospital, and we received a never ending list of scary diagnoses including a rare genetic mutation of ppp2r1a (he’s 1 of only 23 diagnosed in the world), significant brain abnormalities and malformations, vision issues, sleep apnea, cerebral palsy, and neuromuscular scoliosis. We replaced milestones with ambulance rides, ER visits, PICU stays, surgeries, and a closet full of medical supplies and equipment. I could go on and on. We live in a constant state of the unknown as Ozzie’s health continues to decline and each medication we try fails to keep him safe. 

From the very first day we learned of Ozzie’s brain issues, I had to place my hope in Jesus. Through all of the pain and fear, He has been the only constant in this journey. My faith has sustained me through days when I didn’t think I could go on as I watch Ozzie struggle to just be. I cling to John 16:33, “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” God never promises we won’t have troubles, and I’ve definitely experienced my share of them since Ozzie was born. But he does tell us to have hope and peace in Him, and that is exactly what I’ve tried to do. I’ve had to let go of control and surrender Ozzie completely to the Lord. This hasn’t been an easy process, and I still struggle with questions like “Why God?” And that’s perfectly ok! We’re allowed to have tough conversations with God, sharing our sorrow, anger, frustration, and fear. He This is exactly what God wants. He walked this road before us, and this is why we should praise Him in ALL circumstances. He wants to lead us through the dark valleys and rejoice with us when we make it to the top of the mountain.

I don’t think I’ll ever understand why Ozzie has to suffer, but deep down in my heart I know his story serves a greater purpose than I could’ve ever imagined. Ozzie has opened my eyes to a whole new world and taught me so much about faith, trust, and surrender. He’s changed me and given me a new perspective on life. I’ll never take a single second of life for granted because we’re never promised tomorrow. It’s been a lesson I didn’t know I needed, but God did. 

I’ll never stop praying for Ozzie’s miraculous healing. Whether or not it happens during his time here on earth, I can rest easier knowing Revelation 21:4-5 and that one blessed day Ozzie will come running, yes RUNNING, into my arms, free of pain, free of seizures, free of suffering and made whole in Jesus name. Ozzie’s story has already been written, and I’m the lucky one that gets a front row seat to watch it unfold. Until that day of healing comes, I place all my hope in Jesus and thank God for blessing me with my little warrior and my reason to never give up. My prayer is for you to realize that no matter how dark things may seem, you are never alone. Even though we may not understand the “Why God?”, He will always be the one true source of peace to guide you through the valleys and bring you to the other side. “And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4:7

1 in 26 people will develop epilepsy at some point in their lifetime. My personal mission is to raise awareness for epilepsy research to help find a cure for the 65 million people living with epilepsy so no one has to suffer like Ozzie. For more information please visit endepilepsy.org 
In Christ's Love, Leah

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It's Going to Be Ok

10/7/2019

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Written by Christa Booker

Michael and I met when we were 20 and in college. Children. Babies. We had an instant connection and fell hard and fast. We were inseparable. By the time we were 26 we were both living in Nashville building our careers and engaged to be married. No one knew that there was an intense issue behind the curtain of our newly engaged bliss - Michael was an alcoholic. On the day we were married I watched my husband to be standing at the end of the aisle and I could tell he was so drunk that he may not be able to remember much of that day. That was after I had begged him not to drink. All I could think was, “What am I doing?”

The first year of our marriage was a train wreck. On our honeymoon he had promised to stop drinking following our less than perfect wedding day. I wanted to live the typical newlywed life filled with trips to Costco, dinners in our new home, snuggling on the couch with movies, etc. But instead I was coming home to a passed out or belligerent husband every. single. day. Towards the end of our first year of marriage he had 3 car accidents in a 6 week period of time. Something was wrong. He was denying and hiding the drinking. I was an anxious and resentful mess - I didn’t even recognize myself anymore. I begged him to seek counsel and prayed to God every night to reveal the problem. Was he mentally sick? Did he have an underlying health issue? Little did I know what I was praying to be revealed was about to become a life long journey for both of us.

He called me one day after seeking outside counsel that his work provided and said “They think I need to seek treatment for alcoholism”. What? But you don’t drink anymore (that’s called denial, my friends.) I thought alcoholics were older scruffy looking guys that always hung out at bars with beer guts and DUI’s on their records. No way. And after that, I soon found out that the drinking had never stopped and that was definitely the problem.

He entered outpatient treatment immediately. Outpatient was unsuccessful for him - he could never stop. He would lie that he was going to treatment and end up drinking at his office nearby after hours.  And on the weekend of the great Nashville flood, Michael came home in the middle of the day drunk after driving around in the flood waters and failing to find an open 12 step program meeting (meetings were closed, but gas stations stocked with beer were open). It was that day that I completely broke and hit the end of my rope. I couldn’t help him and I didn’t think change was possible. And he decided to go to inpatient treatment. 

The story that unfolded after that was one that only the divine could write. MY plan was to get out, and fast. I got the carpets cleaned and researched real estate agents and lawyers as he attended inpatient treatment. As I visited him in treatment and the mask of his addiction began to fade, I started to see the vulnerable man that I loved that was deeply pained. My heart started to soften and my head started to quiet. I started to address my own pain and begin my healing journey. And shortly after he got out of treatment - I found out I was pregnant. On our 1 year anniversary I was 7 weeks pregnant and Michael was under 90 days sober. You can tell by the math that was not OUR plan. I definitely heard the message. This was where I was supposed to be - as messy and difficult of a road we had ahead of us. We went on to have 2 more kiddos after our “rehab baby” and just celebrated our 10 year anniversary and Michael’s 9 year sobriety birthday. 

To this day - it’s not easy. We realize that our story is not normal and could have had a very different ending. We both struggle with different trauma responses to alcoholism. Many painful things happened as a result and trust was (and still is) a struggle for me. There were maladaptive coping behaviors that formed (such as isolation, codependency and withdrawal) that we have continually struggled to deal with and can take us back to our very unhealthy past. But the synchronicity of events following our pain and trauma have continued to show me that God was slowly healing us through the details. And as we began to heal we were placed in other’s paths so that we could use our past experience to help them find healing. To prove that with faith and a lot of freaking hard work - you can take your life from miserable to amazing. 

Addiction is real and does not discriminate. It comes in the form of alcohol, drugs, shopping, destructive relationships, food - you name it. Addiction is a response to pain and trauma. An attempt to numb our hurtful pasts. Not only does it numb the pain - it also numbs the joy. It provides a false and temporary euphoria that dims the light inside people and rips apart families, friendships, careers, relationships and marriages. And everyone it touches is affected. Once we start removing the stigma and judgement around addiction - I believe that more people will begin to seek healing. The recovery journey from addiction looks different for every person. Everyone has their own method to get to the bottom of their pain and trauma and live a life free from addictive behaviors used as bandages. But I do know one thing - no one can do it alone. I hope that if you are reading this and it has resonated with you in any way (whether you struggle with addiction or love someone that does) that you reach out to someone to help point you in the right direction to begin your healing journey. 
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My growing faith is a large part of what continues to guide me to healing. To me, faith in God is to align with love instead of fear, judgment and resentment. To not know the answers and trust in Him. To quiet my mind and stop feeling the need to make decisions and letting things unfold in time. In His time. Faith is knowing that no matter what happens, I am going to be ok. I wish I could take my 27 year old face in my hands, look her in the eyes and tell her that. Everything is going to be ok. But that truth now will continue to carry me in the future. My pain is a beloved part of me that has created my life story and has continued to provide growth opportunities for myself and help to others. It has provided wisdom that I would not trade for anything. I now know that no matter what happens, what pain I feel, what trauma I endure - God will make sure to put friends, family, situations, therapists, life coaches, programs, articles, books, animals, work out programs, blog posts - whatever it may be, in my path to make sure that I’m  assured that - Everything is going to be ok. And with an open heart aligned with a God of love and dedication to be His hands, feet and hearts on this earth - we can all find continued restoration in this life. Never alone - always together. 

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