SJ’s STORY.

My husband, Justin, says he can still remember the look on my face the night I rounded the bedroom corner with a positive pregnancy test in hand. A crazed combination of excitement and overwhelm in my clear blue eyes. A baby hadn’t been my plan… not yet anyway. And if there’s anything you should know about me from this season, it’s that I was a planner.

Maybe it wouldn’t have come as such a shock if we weren’t living with family while Justin went back to school, nothing to our names but a teaching degree and a technology dream. We were working a catering job at night together to make it happen. And that’s why we found ourselves pulling away from the crowd for a moment, as a pre-lit ball dropped from a crane inside the crowded auditorium of an exclusive performing arts center, ringing in the year 2019. We shared a kiss and the understanding of a plan made earlier to buy a house and start trying for a baby that October, after Justin’s summer graduation. “This is our year for a baby!” I whispered and winked as we moved back to our catering stations. And, because God has a sense of humor, Savannah became due that very October. 10 months ahead of our schedule but right on time for learning to surrender to His.

So, being 10 months ahead of all my scheduled research, we did the only two things we knew to do that night. We ran to the corner store and wandered down a cluttered aisle of rainbow bottles, each making claims to grow the healthiest, strongest, smartest babies, picking them up and turning them over in our hands, pretending we had any real idea what the best decision was but determined to try. And, once home again, I downloaded the pregnancy apps to pray over each developing organ. That first week we found out- week 5- the app focused on detailing the growing heart, so that’s what I prayed for. I asked the Lord for “a heart that beat for the glory of God.” 

If I could have only known the way He was using my prayers to protect His daughter from that very moment…

Eleven weeks later, Justin and I were really embracing the idea that maybe the best parts of life are those unplanned. We definitely didn’t have it all figured out yet, but we’d told family and friends, picked names, and created the beginning of a baby registry- gender neutral for all the big ticket items. Clothes, blankets, and bedding to be added after the 16 week gender reveal ultrasound. We knew the 20 week anatomy scan was coming up anyway, but we were so impatient to know who we were praying and preparing for that we paid extra to schedule another and see sooner. 

That day we learned about a different piece of our child’s anatomy than we had counted on. Taking my hands into her own, our doctor broke the news that not all of our baby’s heart could be seen in scans. It wasn’t until she began to pray- still holding my hands- that I felt my eyes well with tears. I cracked them open against the harsh fluorescent lighting of that exam room but, finding them stinging, shut them tight again. It didn’t matter. I didn’t want to see my hands in her hands or that report sitting on her lap- my name at the top. I didn’t want to see the date written on the dry erase board above the sink counter or the hands of the clock on the wall at exactly 3:02 pm. I didn’t want any confirmation that this moment or these words were real. The sanitary paper on the exam table beneath me crinkled awkwardly as I shifted my weight and let out the breath I had been holding. Justin’s arm wrapped itself around my shoulder, and I caught myself wondering if it were there to comfort me or  to steady himself. 

 Did I need comforting? My thoughts turned to myself and I realized how little I had really reacted. What kind of mother was I? I hadn’t erupted with a pained cry and buried myself, sobbing, into the arms of my husband.  I hadn’t begged God to spare my baby or called out, desperate to understand why this had happened to us. I hadn’t lashed out in my heart at the other mothers tucked in every other exam room up and down the hall, giggling and gushing over new ultrasound pictures.  I hadn’t done any of those things. No, but all of that would come.

 Instead I sat with hot, fat drops falling from my eyes and splashing my hands in that sweet doctors’, my husband’s embrace firm around me, my own mind grasping wildly for reality…

“What did she just say? No, we were only here for the gender. She’s praying for us. Our doctor is praying right in the middle of her office over us. We’re someone whose pregnancy needs prayer. We were only here for the gender…”

If there is anything to love about this tragic memory, our doctor went right on praying, filling the otherwise empty silence with the only words she knew mattered in a moment like this. 

As it turns out, the heart is the first organ to form within a growing baby. By week 5 or 6, the organ is already formed enough that it has begun to contract and a heartbeat is detectable. Savannah’s heart had been attacked before I’d even known I’d been given a baby to defend. It was a cheap shot- a sucker punch- by a cruel enemy, but God had rushed in and given me the only words I’d needed to invite Him into this situation. “A heart that beat for His glory.” Never a Father to violate free will, God needed my permission to enter this situation. Now He was using my simple prayers in a way so much more significant than I even knew. With each, He was shaping me too. Before I had even learned to be a mother at all, I had become a mother at war for the life of her child. The Father was about to show me the way He fights for His kids.

Justin and I left the office hand in hand that day, with a decision not to tell anyone what our doctor had said until we had gotten time in God’s Word. Knowing the power of our words (Proverbs 18:21, Mark 11:23), we needed to understand just what to release, to whom, and when. We realized we couldn’t be distracted by others’ opinions about our situation or about the scriptures we were standing on. We also wouldn’t risk entering conversations where we’d be tempted to complain or to entertain constant reminders of the fear that was doing its best to threaten us.

A few days later, at our gender reveal party, we learned this child we were called to defend was a girl. Immediately we announced her name as our first public declaration of faith that she would live.

 Savannah Jane Miners:

• Savannah- the name that had filled all my college journals as Justin and I had daydreamed of our future family. 
• Jane- In honor of my great grandmother’s sister. A family member so full of life, she joked that everyday was her birthday. The joke originated from a grade school story when she had invited the kids in her class home with her for a birthday party. It didn’t seem to matter to her that her true birthday had long since passed. Janie’s mother- surprised to find a small mob of cake-craving children following her daughter home and yet ashamed to send them all home unfed or openly expose her daughters dishonesty- had quickly gone along with it all and gone out to buy a grocery store birthday cake. I think Great Aunt Janie knew people would always  go along with another reason to celebrate, after that. She kept her Christmas tree up year round and decorated it for every holiday. She tucked confetti in her cards to spruce up your carpet when you opened them. Then she’d urge you not to vacuum it up right away. “You’ll see it and think of me,” she’d say. She just seemed to understand that the world has no maximum capacity for joy. Declaring this same fullness of life over Savannah felt significant. (Ironically, it was also Aunt Janie who was the first to ever encourage me that I’d one day be a writer. We were pen pals. 8 year old me and 80 year old Janie. It makes me laugh too. But through those letters, she saw and spoke life into what my 8 year old heart had known it loved but never dreamed could become a future.)

To us, the name represented that Savannah was loved and long waited for- the very girl whose name filled many journals and nights of pillow talk- but this was the time she was always meant to come. Though we hadn’t planned for her to join our family so soon, God always had planned her for such a time as this. She had purpose, and this was the season when that purpose was designed to be fulfilled. My prayer became one for the life of abundance Jesus came to give (John 10:10). We had already begun declaring over Savannah that she would not die, but live and declare the works of the Lord (Psalm 118:17).

The meaning of Savannah’s name was confirmed as I laid in bed praying over her just days later. As I often hear from the Lord, a thought came to mind that seemed to stand out against the others… “She’s your wildflower.”

 I recognized it immediately and asked, “What does that mean, Lord?” In something that felt like an immediate download, I just knew what He meant.

 Like a wildflower that grows where no one scatters seed, Savannah wasn’t planned by you. She was planned by me, and I will cause her to grow in those places no one thought she ever would or could. She’s going to shoot up through the thickest of weeds- all the circumstances in your life that feel unruly and wild still- and she’s going to survive the harshest of storms- this recent diagnosis and the events directly related. She’ll do this by reaching for the light and warmth of the Son. When she blooms, like a field of wildflowers with cars parked at its edges for pictures, she will cause others to stop in the midst of their own journeys. With great awe, they’ll take in her beauty and know that I am with her.

We kept this promise in our hearts throughout the rest of my pregnancy, even throwing a wildflower themed baby shower as our next declaration of faith that Savannah would live. We still hadn’t told anyone but a few close prayer warriors the specifics of what we were walking through. Meanwhile, Justin and I were in all out war. 

During this time, it was determined that Savannah had half a heart, on the wrong side of her body, flipped backwards, not contracting on its own, with inappropriately routed arteries, and every organ system shifted out of alignment. Doctors were saying that Savannah would not likely make it to delivery. They continued to offer termination due to fetal anomaly even after we vehemently denied it. We knew that this life had been planned by God and held value, even if it looked different from what we’d expected. 

As the firmness of our decision became understood, I was referred to pediatric cardiac specialists, first locally and then in Miami- the nearest big city and children’s hospital site.  

My miracle of a Mom soon moved with me to carry out the remainder of my third trimester there, the plan being to deliver Savannah at a hospital that could immediately transport her to the nearby children’s hospital. If I had delivered at home and she had been immediately transported, we would have been in two separate cities until I could be discharged to meet her rather than just at neighboring hospitals…which felt like it might as well be just as far. Little did I know I’d walk the sky bridge from the mother and baby unit to the labor and delivery unit the day after giving birth, just as soon as I’d finally convinced the nurse to take that catheter out. I’d lean up on a wall outside a laboring mother’s room and wait for that doctor to come out, disheveled as she was, splashed in another woman’s bodily fluids, so I could direct her to come sign my discharge papers. Little did I know that separate hospitals wasn’t something I would have to worry about long. And I’d have taken crossing even one thing to worry about off that list of hundreds. 

Hospital housing was full when my mom and I arrived in Miami, so we were re-routed to the backyard AirBNB unit of a Ms. Margarita, whose fee the hospital covered in full. She prayed over me when she met me and left a gift bag hanging on the doorknob for Savannah, and I knew God had gone before us. There my mom and I spent the next month tucked away from the world, sitting largely in silence and reading our Bibles, wanting to save money for whatever lie ahead, and feeding a neighborhood cat she nicknamed Juan Pablo in between loads of laundry. It was for her favorite  Bachelor contestant as much as it was for the beautiful culture of Miami, which we explored after my morning fetal medicine appointments. Well, for as long as my swollen feet and very pregnant waddle would allow under the scorching coastal sun of late summer. Justin wanted to save all his days off work for once Savannah was actually earthside, so he and my Dad faithfully drove across the stretch of highway breaking up the Florida Everglades to find us every weekend. And when they did, we’d take them out to eat ropa vieja, arroz con frijoles, and fried platanos as we joked about how Savannah would be born rolling her R’s. Her first of many nicknames was Havana after that. 

Throughout it all, Justin and I watched our words, still choosing to release only what God’s Word said about her and not diagnoses. We wrote the promises of Scripture out on index cards that hung like a gallery on our bedroom wall, both in our home and Ms. Margarita’s. We were persistent in prayer and determined to take back ground stolen by the enemy with every deliberate act of faith… a baby shower, a gender reveal at school with my students, a nursery, shopping hauls, maternity pictures, a baby moon to Savannah, Georgia… you name it.

Finally, on September 25, 2019 at 8:03 am, hell heard a baby’s cry that made the demons cry out too… with fear. They’d seen it before. A baby born is a powerful arrow in the hands of God. And now here was the life they’d tried to steal, 6 lbs 7 oz, 19 inches long, and backed by Heaven. The war wasn’t over but we’d made significant ground. Our girl was now in our arms and we were learning this passionate, protective love a parent feels is only a small glimpse of our Father’s love for us. What could be more empowering?

For the next three and a half months, we continued to stand our ground spiritually. Through cardiogenic shock, a ventilator, an emergency, external pacemaker placed through an artery in Savannah’s neck that she had to be medically paralyzed for, a helicopter transport to another pediatric cardiac program in the state because Savannah was more complex than first understood, open heart surgery to place a permanent pacemaker, 37 days spent on a ventilator and another month coming off lesser respiratory supports, collapsed lungs, and a few medical mistakes, the attacks poured forth but God proved Himself faithful through them all.

Sometimes He proved His faithfulness by putting us in the path of medical professionals who were as compassionate as they were educated. They knew when to make decisions that challenged Savannah’s system and taught it to fight, and when she was deserving of rest. They knew when we, as parents and primary caregivers of a highly complex cardiac child, needed moments of rest too. They’d see us coming down the hall and- even in the middle of rounds, when they were reporting and you had the good sense to hurry past and not interrupt their important work- they’d put their arms up signaling they were breaking away from the crowd to come to you for an embrace. They’d put their arms around your shoulder with the delivery of hard news and assure you that you weren’t alone. They came and sat with you, asking about details of your life beside your child’s diagnosis, and telling you about their own families. (This was one of my favorite parts about those long days locked behind a heavy sliding glass door, where one small window separated me from the real world and the person I could remember being on the other side. Talking to our doctors, nurses, and therapists, making friends, was like remembering our lives were and would always be more than these seemingly endless days in a hospital. ) And they would patiently show you how to step in and take on tasks so you could feel confident in your own child’s care. (Most mothers quickly find their mother’s intuition as they’re sent home with their children and learn their cues but medical mothers are deprived of this opportunity as they stand down in order to let professionals step in. Sometimes they’re scared to even touch or hold them at all around all the tubes and wires.) Justin and one of the support desk tech’s also had an ongoing collegiate football debate played out through caricatures on our patient whiteboard. Justin would draw Florida State Seminole gear on our illustrated family portrait. Our tech and friend would come in and change it to Florida Gators gear every chance he had. I felt many times that it was a miracle we had been transferred to a facility that already felt so much like family, and that warmly welcomed us into it.

Other times God’s faithfulness was through the sudden, sweeping miracles.

Palliative care came to talk to us once about our last requests, but we continued to speak openly about the hope we had in Jesus that Savannah would live. We understood our part in spiritual warfare- God requires our position and confession of faith to partner with His power in order to fulfill His promises. So, we continued to declare God’s will with the authority that has been given to us as His sons and daughters. We took communion in Savannah’s room, prayed over her throughout the day, every day, and hung the very same Scripture cards that had once hung in our bedroom on every hospital bed she slept in. In the early days, the prayers were as simple and yet as significant as prayers for urine- the output that proved there was still life in her organs. They were for a  slightly decreased blood marker. Another medicine weaned. The ventilator coming down by even a single setting. We’d sit by Savannah’s side all day- 7 am to 11 pm- not even sure she knew we were there- taking turns holding her hand, kissing her head, and praying in her ear. We left praise and worship music playing in Savannah’s ICU room day and night , ushering in the presence of Heaven, knowing that light and darkness could not co-exist. We did whatever we knew to do, let the professionals do what they knew to, and then watched with expectancy for what only God could do.

Back at the Ronald McDonald House where I was staying- still bleeding, still bearing the pain of a wound cut through to my womb- the enemy tried to wear me down too. Panic attacks and horrific nightmares stole the short windows of sleep I was getting between pumping sessions and postpartum night sweats. They gripped my neck and chest with such tightness that, at one point, I was taken for an EKG to ensure Savannah’s heart issues hadn’t been caused by one of my own. Missing alarms to catch up on sleep meant mastitis came and went. I was scared, I was sore, and I was so very tired. Worst of all, I was feeling alone. I wasn’t alone, of course, but I was struggling with the realization that the people you expect to show up for you in tragedy aren’t always the same ones who do. Thankfully, God uses these seasons to speak to the hearts of amazing men and women who rush in and become intercessors, confidants, and close friends forever.The friends I gained in this season have shown me the kind of friend I desire to be to others from now on; and the prayer warriors who stood beside me are my inspiration for being here now, wanting to reach a hand back to those still in battle for their own children. To this day, I cry when I think of the text I received from one of them… “you do what the moment demands and just know we’ve got the warfare.”

By January of 2020, Savannah was stable and remained admitted only to work on oral feeding skills. Doctors were coming by our room to ensure we knew what a miracle this was. We knew. She had an NG feeding tube taped to her face that ran down through one nostril to her stomach. Getting rid of this tube was our next goal, but bottles were traumatizing to someone who didn’t know the difference between one and the many masks and tubes which had been strapped on, slid inside, and taped onto her face. It was decided that this was a skill best worked on from home- a quiet space that would come to be interpreted as a safe place. Opportunities to keep trying would be continuously presented with patience. Justin and I were trained on replacing the NG tube, in infant CPR, and in fortifying breast milk for higher calories. We received an electric feeding pump, a baby scale, and a pulse oximeter to take home. Finally, we hit the road for home on January 8th. It might have felt like there was 1 step back for every 2 steps forward at times, but the math still worked out that we were taking back ground. This was another battle won in our long war, and we made sure to celebrate the victory.

I had called to extend my maternity leave once around December when I could see there was no way I’d be anywhere close to coming back by January. It only took a few weeks of being home for me to see that any length of maternity leave, extended or not, would not be enough. Home with Savannah was where I both wanted and needed to be. Besides needing to develop feeding skills, Savannah also required regular physical, occupational, and speech therapy, local cardiac and dietary care on top her pediatrician appointments, and monthly appointments back at the admitting hospital, four hours from our home. At this time, the plan had been for Savannah to be closely monitored as she was home gaining the weight and strength necessary for a series of 3 open heart surgeries to take place in her first 2 years of life. I was required to report in daily with her oxygen saturations and weight to ensure she was doing well. Her feeding pump ran every 3 hours, and she also needed medicine administered 6 times a day beginning at 6 am and ending at 10 pm. Through much prayer and a swift maneuver only possible with God (seriously, it still leaves me speechless), Justin switched jobs to work for the same employer I had ( necessary given the quality of insurance provided), we switched Savannah from my insurance policy to Justin’s (without even having to meet the deductible again), we used Justin’s new income (which he didn’t technically have yet) to purchase a home we could manage on a single income, and we moved in on the same day a global pandemic shut down the world in March of 2020.

Because apparently I hadn’t experienced enough panic attacks yet. Kidding. Kind of.

Spiritual warfare took on a new intensity again as I now became familiar with the very normal loss of identity and social isolation of stay at home mom life coupled with the not-so-normal stresses of being a medical mother. I would recite to myself the ratio of breath to chest compressions in infant CPR to make sure I wouldn’t forget if something happened and I was home alone, set alarms on my phones to ensure I didn’t mess up the feeding pump and med schedule, and reminded myself we had chosen a home close enough to an Emergency Room that I could run to it faster than any ambulance could pick us up, if I had to. Now add in the “new normal” (as the world was calling it) that came along with Covid-19. That “new normal” prevented me from walking around a park or a department store to get a break, or from being involved in a weekly prayer group or anywhere with people who could have reminded me I wasn’t alone. 

So many of the things I knew to be true of God swirled in my mind at this time. Social isolation and the fear the world was selling was stealing my sense of reality. The panic attacks began again and my sweet Dad was stopping by daily to make sure Savannah and I were stable. Justin’s new job was requiring a lot of overtime and late night hours to get laptops in the hands of 48,000 new virtual learners throughout the school district. There was no end in sight to this schedule and nothing we could do about it because we needed this insurance so badly. (In just her first 3 months of life, Savannah had become our million dollar girl.)  Even when Justin was home, he was falling asleep standing up. It was all more than I could bear, and only made worse by the haunting thought that I could not let my own struggle sacrifice Savannah’s care.

Doctors were doing their best to ensure we realized the severity of the season, speaking of being exposed as though it would mean certain death for Savannah. Meanwhile, I was still monitoring her weight and oxygen saturations at home just trying to maintain those. Savannah’s oxygenation goal was already lower than what would ever be considered safe for you or I. Her goal was 75% oxygenation or above, and this goal was expected to remain until she was strong enough for the planned surgeries to repair her heart’s structure and function or until God stepped in with a sudden, sweeping miracle.

 By May of 2020, Savannah’s oxygen saturations dropped into the 60’s and we rushed her to the emergency room. With the new Covid protocols, only one of us could be with her as she was soon transported back to the admitting hospital four hours from our home. Savannah was put on IV medications and oxygen support to help her recover from whatever little virus she had picked up. A virus so insignificant to our mature immune systems that we hadn’t felt the slightest symptom, but so devastating to Savannah’s delicate anatomy that it required doctor intervention.

As I sat, so far from home, masked and alone in this intensive care unit, our daughter’s cardiologist came into the room and broke the news that Savannah was being put on a heart transplant waiting list. The team no longer believed that Savannah was strong enough to endure three separate surgeries to repair her own heart. My mind flashed to the beautiful five year old who’d just received her heart after over a year living in the hospital and waiting… but also to the precious children who’d passed away while waiting. Both made me shudder. Justin wasn’t allowed to come up to the unit- neither were we allowed to switch off- so I called him and stumbled through the words to describe something I still didn’t believe was real. Alone again. Then I sat in the dark and, through my 10th story window, I watched the Black Lives Matter protest forming in the streets below. Savannah slept across the room from me and I sobbed for Jesus to just come get us. The world was running wild with viruses and violence, the weight of my own world was crushing me, and I didn’t care anymore if I lived or died. The reality that I was not of this world had never been so real. I just wanted to be with Him. Held safely in His arms… high above whatever hell this all was.

But God didn’t reach down and rescue me the way I wanted Him to. Instead, He took me by the hand and raised me to my feet to regain my stand on His Word. Social isolation had blindsided me. The spirit of fear had used it as its Trojan horse to come in and cause me to forget the victories I’d already seen in Jesus. It scared me into believing that someone else had carried the blessing for my family in the past- that I was not capable of standing on the Word by myself. But that had always been a lie, and the short time I spent believing it had left my family vulnerable to further attack. Now I could hear God whispering “One Teacher.” It was time to put away every sermon, every book, every teacher I was soaking up wisdom from to be taught only by Him. The next night I stayed awake reading His Word all night as Savannah slept across the room from me again. A young resident doctor came in and saw my giant, hardcover study Bible and excitedly asked me what I was studying. “The book of Matthew,” I said, hopeful for someone to talk about it with. I watched as his expression changed, quickly realizing it was not a textbook but the Bible. He made an excuse to leave and I never saw him again. “One Teacher,” God reminded me. “Where you’re going, you’re going alone, but I’ll be with you.”

A few nights later I had found my faith again and, with it, my voice.  I looked over at Savannah in her jumper, eyes on me, and was captivated by the way she watched me. She had so much love in her eyes. It was like I was seeing it for the first time. To her, I was her safe place. I knew her like nobody else ever would. She had come from me, and I knew what God had spoken to me about my wildflower and this heart that would beat for His glory. I knew Savannah had been entrusted to me and so had this revelation about her life. So, I talked to Justin and we decided together… As long as Savannah did not require continuous IV medications or any mechanical intervention, we would be taking her home to live the life of abundance promised in Christ. She could wait for a heart to become available from our home, where she wouldn’t miss out on time with all members of her family or any of the milestones every child deserves. And, as I figured, where we might just witness a creative miracle instead. My hands would be the main ones touching and holding Savannah each day, and Scripture tells us believers can lay hands on the sick and see them recover.

I  don’t remember what the conversation with the hospital staff was like, but I have to say, I’m so glad for the partnership we had with them. Learning to profess our faith in such a fragile situation had to be balanced with the steady demonstration that we were still doing our part. We wouldn’t neglect Savannah’s needs or ignore any of the signs they were telling us to watch for in the name of faith. We’d just make it known we were praying for something more. Even if they didn’t believe in Jesus for it, we all had the same hope for Savannah.

So, against their advice, but still with their support, we loaded Savannah up and hit the road for home again. It had become apparent how hard the enemy was working at stealing this child and silencing this story, so we decided not to wait any longer to have Savannah dedicated to the Lord. We called our pastors and they arranged a baby dedication service that very next Sunday. They had only just gotten back to “in person” services and, even then, it was unsettling for many people because schools and most businesses were still shut down. Our pastors had so many other things on their mind at the time- and the church already offered a designated monthly day for baby dedications- but they saw our urgency and went out of their way to make this happen for us. They gifted Savannah a personalized Bible that she was able to tell most of the stories from only a few years later. That day, in front of our family and friends, we lifted our 8 month old daughter to the Lord, declaring that we’d raise her for His glory. We acknowledged that she had been entrusted to us by Him but we couldn’t do it alone, and we publicly invited Him into the midst of this situation, trusting Him to guide us to the right doctors, reveal solutions to Savannah’s needs that no one had yet considered, and to help us rest in Him when none of it seemed to make sense.

Even after getting settled back in at home, Savannah’s schedule stayed busy. Two, sometimes three, times a week she went to physical therapy, occupational therapy, and for a while, speech therapy. Recently, after one of my own workouts, I wondered if she was ever sore for as hard as she worked each time. If she was, she never showed it. She woke up ready for every day and whatever it brought on. We went to local pediatrician appointments and local pediatric cardiology appointments. We worked with a local dietician who helped us adjust the volume of Savannah’s tube feeds to ensure she was getting all the nutrients she needed. And we worked with a national organization specializing in feeding tube weaning, which insurance did not cover. This got scary at times as we had to cut feeding tube volumes to create hunger for oral eating opportunities. Little as she already was, she lost a lot of weight. She fought her way out of and then fell back into the percentiles that represent “failure to thrive,” even as we spent hundreds of dollars and dozens of hours every month creating the highest calorie homemade purées, mixed with full fat butters and heavy creams and MCT oils, just for her to throw them on the floor. Or, my favorite, to hardly get strapped into the high chair before she was using the baby sign language for “All done.” Ugh. It was as frustrating as it was adorable.

Once a month, and then every other month, and finally- after two years- once every four months, we traveled to the admitting hospital for check ups with their cardiology and transplant teams. We’d spend the day before the appointment making the four hour drive, and usually get there just in time to unpack, set up the pack-n-play for Savannah, get the meds moved from my cooler to the mini-fridge, and go to bed in a hotel. Then we’d wake up at 5:30 am to run Savannah’s first tube feed of the day ahead of the earliest appointment the clinic offered. She cried too hard during the appointment to try to run it then. She’d just throw up. By 12 or 1 pm, we’d be leaving the clinic and trying to keep Savannah awake through our stop for lunch because, immediately after, we’d hit the road back for home and pray she slept most of the way. Sometimes I’d hardly get our bags unpacked before it was time to go again. And, because the cardiac clinic only took appointments on Wednesdays, and because we felt it was wise to save Justin’s paid days off for any more emergencies, he wasn’t able to come with me. It was that miracle of a Mom who stepped in for me. Again and again and again. Most of the time with snacks and a new roadtrip toy for Savannah. 

I dreaded these trips, not just for the hassle to get to them, but because the script was always the same. Savannah’s height, weight, and oxygen saturations would be taken first. Savannah screamed through all of them as I held her close, trying to comfort her, willing myself not to cry too. Every month I pleaded to God that her screaming would not skew her numbers enough that they thought she should be admitted on the spot. An EKG and echocardiogram would follow, which she also screamed through. This all took about an hour-and-a-half to two hours.

After that came the actual office visit. Already worn out, we’d make our way to a cold room where doctors would tell us she was doing well before they would remind us of every awful symptom we needed to be watching at home for. Mentions of turning blue, having shortness of breath, experiencing frequent or steady drops in oxygenation levels. They’d remind me over and over again that it was what they “expected to see.” 

 I did my best to numb myself before we went to these appointments so that I wouldn’t wince when their words came. I wouldn’t allow myself to show any sign of fear or weakness. It was always on my mind to present myself well and make it known that all of Savannah’s needs were being met. Though I never suspected it from the professionals at this particular hospital and the relationships we’d made with them, the reality is medical kidnapping is a threat in today’s world and I knew Savannah was thriving at home in a way she could never in the hospital. I also knew that taking our young child home on a heart transplant list probably wasn’t something often done. Sometimes I wondered if my lack of apparent emotion is what made them repeat their words all the more. Several times within a single appointment. Maybe they thought that they weren’t getting through, or I didn’t really understand all the risks of having Savannah home. Maybe my own reaction was the reason it was repeated so much. I don’t know.

What I do know is I still believed God’s Word over these reports, but that does not mean I didn’t battle to keep it central in my mind. I could not let myself be led away by fear. Especially when- so many times before- what professionals had said had been so much different than what we’d seen.

 They just wanted to be sure Savannah was safe. I know that. We had chosen this hospital not only because it was home to some of the most successful professionals in the field of pediatric cardiology, but also because it was home to some of the most compassionate. I had personally spoken on the phone with the unit’s director and hospital’s top paid professional. He had patiently answered all of my questions about Savannah’s transfer back when she had first been born. He said yes to my daughter though the details of her diagnosis threatened the hospital’s success rate. (The way it should be among all hospitals, but sadly is often not.) The staff at this hospital was good to us. We were grateful for them. 

Still, hearing their words over and over every month was agonizing. The threat of being ripped away from our home again, hospitalized, and living apart from Justin indefinitely already hung over our heads every moment of every day. Numbing myself and silently enduring the comments about doctors’ expectations was the way I reasoned I could avoid agreement with words that did not align with God’s truth at the same time that I proved myself capable of her care. My thought process was always “we’ll handle anything that comes up as it does. I’m not going to waste time worrying about things I have no control over and let them keep me from working on the things I do.” Looking back, I realize I did not even let my head nod in the steady bounce that demonstrates someone is following along for fear it might be misconstrued as agreement. 

Around all of those appointments, Savannah needed five-time-daily medications- some of which needed to be kept cold in coolers on planned days out- and her feeding pump ran every 3 hours. This included throughout the night until we finally transitioned her entirely to days somewhere around a year and a half old. Every transition took so much time. We were adding more calories to support her growing age and size, and yet we were adjusting the rate to make it run over less time so there were longer windows in between feeds for feeling hunger, not to mention the freedom to be a kid untethered. However, more volume plus a higher rate meant Savannah filled up faster and threw up often if we didn’t get it just right. It was a delicate balance. Savannah’s feeding tube also needed to be replaced every couple months, unless it became clogged or she somehow pulled it out and then it was more. This often required me to straddle her on my bed, gently holding her arms at her sides with my legs, in order to place the feeding tube by myself while Justin was at work. It’s a memory I shudder thinking of, but she recovered quickly and I reminded myself often it was still better than the alternative: living in the hospital.

During Savannah’s naps, I spent long hours making calls to our insurance company to check coverage, understand statements, and advocate for additional needs. I made calls to the pharmacy for medication refills- I did a dance the day I learned you could sync prescription refills instead of monitoring them all one by one- and to durable medical equipment companies for formula and feeding supplies, and strips for the pulse oximeter. By night, Justin and I drew up medications in syringes by the masses and organized them in labeled containers to last for a few weeks. The generous friends we had at the pharmacy gave us handfuls at a time so we could create a system that allowed us to get a little ahead. Before that, I was drawing them all up at the start of every day, never making it out the door anywhere on time. And late at night, after all the family had gone to bed, I stayed up studying scriptures on healing, and researching developmental milestones, therapy toys and techniques, holistic health, homeschool in the state of Florida (the older Savannah became without yet walking or weaning from her feeding tube, the more I knew homeschool was our best option to meet both her delayed gross motor and advanced cognitive needs), activities happening around our hometown, and new ideas for growing self-esteem in children with special needs.

Yes. Lots of ideas for growing self-esteem. It wasn’t until I laid eyes on Savannah’s tiny body tattooed in scars that I ever felt thankful for my own. At least I would have something to point to when Savannah asked me about hers. The infamous “zipper” tattoo that cardiac families know all too well, among an array of others. Some planned, some not, all painful. We’d share a wink and the sentiment that what couldn’t kill us had made us stronger. We’d be a tiny girl gang, bragging about our tattoos with better stories, and our God who bears His own before heading out on our bike. No Chopper needed when you’ve got the classic cherry red Radio Flyer with the handle for a parent to push you.

Oh, but scars are one thing. People, entirely another. People back away from the rough and worn ragged. They forget that all wounds eventually turn to scars if they’re treated well. And they forget bearing scars has always been a way to represent a King who bore a cross. We only have to trace our hands over our own raised, white, healed, once hard, lines to know He’s been here.

It had taken me a full year to finally decide to reach out to someone I thought I could trust to pray with me and process Savannah being on a heart transplant list with. The response I got was that they could not stand with me in this, and I needed to be able to take things to God all on my own. (Actually, there were two people there the day I opened up about everything, but this was the response of the only one I really thought would stand with me. They were one of my best friends.) I cried harder than I ever have in my life as I talked about the threats that hung over my head every day since Savannah had been listed… threats of being ripped away from our home again, Savannah being hospitalized, her heart and very life reaching such a fragile state, and having to live apart from Justin indefinitely as I dealt with it all.  I never heard from either one of them again about that heart transplant list or how we were doing as we dealt with the reality of it.

I didn’t tell anyone anything after that. Seeing the way I was dropped made me determined to do whatever it would take to keep Savannah safe from knowing that same pain by her own friends. I started shutting people out and patrolling the play dates we still did have, trying to control every situation. I prepared table activities, sensory bins, pool days, anything that would put Savannah and her friends on level ground. I prayed daily that she never saw the things they could do that she couldn’t- like standing or walking- or question why their faces were free of tubes, unlike hers. I cried the day she grabbed a fistful of her friend’s shirt, pulling the little girl down to the floor beside her because she couldn’t stand, saying “play with me.”

Some of the calls I received during this time only made me more rigid and guarded with Savannah. Like a call from a friend to ask for prayer that her baby would be okay after the large amounts of pain medication she had to take for another issue. I was happy to pray, happy to be asked to be a part of it all, though I did ache at the mention of a pregnancy. Then came the real blow. The words, “At this point, I wish I could just miscarry and start over once this issue was taken care of.” All I could think was that she had called someone whose child had actually been diagnosed with something and had adamantly stood her ground to defend that child’s life against doctors suggestion to terminate, and yet here she was saying she wished she could miscarry because of the possibility that something might go wrong. This friend is now a mother to multiple beautiful, healthy babies. She hadn’t experienced the love of a mother yet to know what she was saying, and there’s grace for that. But being at the receiving end of those words felt like, here were finally allies after feeling so alone, aaaaannnnnd I was being fired at by them. Great. And there were so many others like it. So many calls from others who needed prayer or wanted parenting advice but never took the extra moment to press in and ask about Savannah or even take our situation into consideration.

Not even strangers felt safe. It’s still hard for me to understand how many of them would come up to us and comment about Savannah’s feeding tube in public places, thinking that was okay. Or normal. I had to rehearse answers ahead of time to keep myself from stuttering in shock. I loved when someone would come over to talk to Savannah and, as I stiffened up and prepared myself for comments and hard questions, they would only compliment her joy, blow her a kiss, or strike up a conversation that had nothing to do with her tube. Now that was normal. I didn’t even mind the man that asked her “hey little one, you been slaying dragons?” or the one who gave her some Spock looking hand gesture and the sentiment “live long and prosper” as he jogged by. It lined up with Scripture still, I guess, and it definitely made me smile. But once, in the middle of a Home Depot garden center, when Savannah was enthralled by the grandeur of a garden section that had flowers in all her favorite colors, a man passed us with his cart all too slowly. I felt the hairs on my arm raise when, out of the corner of my eye, I could see he had turned around and come back to ask- and I quote- “What’s wrong with her?” It took every bit of holy restraint I had not to hit this guy with my orange cart bumper-car style and never look back. Instead I repeated the question back, “No, what’s wrong with YOU?” After that, every person who laid eyes on Savannah and changed the direction of their cart to come over to us became an immediate threat. I carried out chores with such caution that there were days I couldn’t even complete my shopping list. I was more conscious of the people I was navigating Savannah to avoid than the task I was trying to get done. I was so afraid for her to see that she was different and somehow interpret that as “less than.”

Finally, a true friend- the kind that knows when to be straight with you because they’ve been by your side through so many years- looked me in the eye one day and said, “Nicole, I know you’re only trying to protect Savannah, but she doesn’t see what you see. Savannah just sees friends that love her and want to spend time with her, not the things they can do that she can’t yet. If you keep her from people and experiences because you’re trying to protect her self-esteem, you’re going to expose the very delays you’re trying to hide . You’ll make her wonder why that was something that ever needed to be hidden in the first place.” She was right, hard as it was to receive. Looking back, I wish I could have seen that this was the very friend I needed to tell our story to. But, by that time, I was far too busy building walls. And that’s the thing about walls, like the tall ones that enclose exclusive communities, they keep out the people who want to use our resources like racquetball courts or crash our pools of peace, but they also keep out the ones who want to come by and knock at our doors unexpectedly. The people who drop in to see how we’re doing and to spend true quality time.

Savannah knew this. While I was the one keeping our world small, she was the one waking up every morning asking “What we doin’ today?” which really meant, “Who will I get to see today?” She was the one waving to, even beckoning for, the very people I tried to push her past quickly in stores. She was the one asking to see her little friends and to send photos of herself doing fun things to her therapists on her off days. As many people as I kept trying to keep out, Savannah kept welcoming them back in. I saw my friend’s point. Savannah was not meant to be hidden away from the world- in any way. Neither were we meant to do this life alone.

I vowed to use this experience to make sure my friends knew they were never alone. Any time I started to worry about our circumstances, I looked for a friend I could check in on instead. Someone who needed help easing their own worries. Sometimes the hard calls still came. They didn’t stop hurting, but God brought patience and healing. Over and over again, He whispered His Word to me, “forgive them Father for they know not what they do.” With these small shifts, Justin and I walked through some incredible journeys with beautiful people- many of whom experienced miracles that fueled my faith for my own, and a few I could only hold and promise to be with when none of it made any sense. Now I was certain that was still the better option than to be alone. 

Savannah was teaching us to live with our arms wide open, and to gather people up as we go. Literally. I put her down in the grocery store one day when she’d just learned to walk, still all wobbly. She locked eyes with a woman in the deli department and walked all the way over to her, arms open wide. The woman caught my eyes and widened her own as if to ask, “me?” I could only shrug, watching it all unfold myself. She put down the packaged meat she was holding and slowly crouched down, positioning her arms for a hug. Savannah ran into her arms and laid her head down on the woman’s shoulder like she’d known her all her life. The two of them held each other there for what felt like a full minute, carts pushing past, the next deli number being called, the chill of the refrigerated cases filled with their expensive cheeses. And when Savannah finally let go, she walked right past her and continued on toward the produce. In my own shock, I did the same, never saying a word to the woman but struck with wonder if Savannah was onto something. Maybe the best way we stabilize ourselves when life leaves us feeling wobbly is by reaching out to hold and to be held by others. 

So, I started welcoming the people Savannah called over in public. With a little crooked finger, she’d call them over and then laugh maniacally when they’d actually come to her. I’m not sure if it was because I cringed to have to come up with small talk or because it was some kind of game in cause and effect for her. I got better at it with time, and soon I would dare to say I was as social as the little Q-tip tops Savannah called over. I let a man pick her up in church when, during worship, she put her arms out to him over the back of the chair she stood on behind me. He shared with me what a blessing it was to him because he once had a child who was on a feeding tube. We started walking inside the Publix store to pick up our prescriptions instead of only going through the drive thru when Savannah helped me reconnect with an old friend from high school who became our pharmacist and introduced us to the rest of the technicians. Cashiers at our favorite places remembered Savannah and the way she liked to be the one to rip the receipts off the register. We made it a point to talk to our healthcare providers about their personal lives, and now Savannah’s dietician and I text and catch up about our foster parent experiences. I went to a Bible study at her physical therapist’s personal home, and have gone to even another one with her since. She and Savannah’s occupational therapist created a memorial wall honoring Savannah right inside the pediatric clinic. I have friendships that I would not know without my sweet SJ, and a slower, more patient pace when I see someone that might be in need of a friendship too.

But living with my arms wide open like this wasn’t the only thing Savannah was teaching me. Savannah Jane also understood the little things… or as we like to call them, the simple joys. The SJ’s.

Joy comes with the understanding that every moment of our lives holds space for both gratitude and sorrow. While we walked through the worst circumstances of our lives, God was allowing us to live, ultimately, the best days of our lives. We were giddy in love with our girl. Even the hardest days we saw through rose-colored lenses… at least some hue of it.

This must be why it has been so hard for me to finally tell this testimony and to face what we really lived. If you didn’t know Savannah personally, those paragraphs above- if they were left to stand alone- paint a completely different picture of who she is. I remember the first time someone mentioned to me that I was raising a terminally ill child. I must have looked at them like they were crazy. I had never- not once- thought of Savannah in that way. Every day I declared over her that she was the healed of the Lord. In my eyes, she was everything I had ever prayed for, just with a few extra challenges she needed help overcoming. She couldn’t control these things. They didn’t get to define her identity like that.

As Savannah approached a year, I had mostly come through my panic attacks and was filled with a fresh hope. I planned a time capsule birthday celebration, inviting family members to write letters to Savannah that she could open on her 18th birthday. And I don’t feel foolish for it now. If we can find even the smallest flicker of hope inside, it can be fanned into a flame of faith that keeps us alive. It’s how we survive.

I also started feeling prepared to fill those stretches of greater wake time with developmentally appropriate fun. This started slowly- many days still at home at first. I considered Savannah’s physical and occupational therapy goals as I set up a schedule to meet them in new and creative ways. Soon I had printed language milestones and lists of words I could use to teach functional language, and incorporated them into our play. Once she had these down and we got kicked out of speech therapy for being developmentally on track (every medical mother’s dream- graduating from a speciality), I started sorting Savannah’s toys into themed weekly rotation bins to build vocabulary and background knowledge through play. The bin themes were transportation/community helpers, home/pets, wild animals, ocean animals, and farm/farmer’s market/grocery store. Each bin contained themed books, fine motor tasks, color, letter and number games, and themed pretend play pieces we worked to create unique gross motor and sensory opportunities with as well.

(Therapy play shown above)

When creativity struck or Savannah’s curiosity led us to a new theme, we mixed and matched our boxes to have new fun. Among my favorites were…

• Pulling out my childhood Beanie Babies and setting up an entire zoo across our home, with separate enclosures for each animal, and our onsite, world renowned veterinarian, Savannah Miners, providing examinations herself. Remarkably, she also handled all ticket sales and personally directed tours. She got a lot of walking in that day.
• Setting up and racing through obstacle courses assembled with couch pillows, toddler trampolines and slides, balance bikes, and more. 
• Using a pink, plastic Fisherprice shopping cart to practice walking back and forth from the playroom- where signs had been hung, all the foods from her play kitchen had been assembled on shelves, and a play cash register and shopping bags were set up to resemble a grocery store- all the way to her room where her play kitchen and hungry guests (stuffed animals) waited. Sometimes she was the cashier using core strength to balance as she rang up and bagged items. It didn’t matter how much she bagged, you always got a deal… 2 dollars, no matter what. Other times she was the customer, bending and squatting to find the last can of green beans. She had her purse full of cash and coupons, and generously gave it all. No need for making change as far as she was concerned.
• Watching a tiny world class chef pulling to stand on her play kitchen, balancing to stir, using her strength to pull open cabinet doors, all to assist her (apparently French) father in the kitchen as they both shouted “Oui! Oui!” (This was largely influenced by the kitchen scene with the lobster in The Little Mermaid. Yes, I know they’re not French. No, I don’t get it either.)
• Having home concerts- with all our many instruments scattered out- to build strength and bang, and to sink at the top of our lungs to improve lung capacity and improve respiration rates and oxygen saturations. We ranged from Holy Spirit praise parties to inspiring Disney princess songs we could belt out like declarations.

(Imaginative play shown above)

Bookending this kind of play was always our morning devotional time and our evening dinner, bath, book, and bed routine. It was so important to me that Savannah was well-rounded. We would not forsake any of the ways we were called to raise her simply because one demanded so much of our time and resources. If God had given us this child, I knew He would equip us to meet all of her needs. We would just need to be intentional with our time.

So, every early morning, Savannah would call to me just as the morning light began to fill her room. We had taught her to look at the monitor and say “Mama,” knowing I was watching and would surely come. She was never alone. (Teaching her this was hilarious because it involved Justin sitting in her crib acting out the whole thing as she and I watched it from the monitor in my bedroom while I explained.)

After I’d scoop her out of bed, I’d pull her over to my room and drag a basket of books from my closet to dump on the bed. In this basket were Savannah’s Bible, books about Bible heroes, Bible sticker books, Bible watercolor books, and Fisher Price nativity play pieces. While Savannah explored the bin on her own, I’d get a little bit of time to pray and read my own Bible and- let’s be honest- fall back asleep for another 20 minutes. As Savannah’s interest in exploring the books on her own would wear out, I’d put aside my own study and pick up one of her own stories to read with her, adding sound effects and all the drama. Sometimes we’d bring the basket downstairs, put soft worship music on the TV, and read them on the couch while the house was otherwise still quiet and dark. She learned a lot of Bible stories that way. Over time, her devotional basket would occupy her longer and longer, and I’d set aside my own study to watch her retelling the stories to herself, stopping to act out swinging David’s sling or to shake her finger at a crafty serpent in Eden as she warned “no, no.” And while I watched her, I’d praise God that He was building His relationship with her uniquely and intimately.

I watched her prayers transform from “Jesus” to “in Jesus’ name, Amen” to “Dear Jesus, help Mama’s face, In Jesus’ name, Amen.” That last one, ironically, coming after her toddler ‘tude led her to swipe at my face when I told her she couldn’t do something. I winced as her nail caught my cheek, then watched as immediate conviction washed across her face and she reached over to pray over me. How could I even correct her after that? I had just seen the Holy Spirit at work in a 2 year old. Savannah loved to pray for her friends too. If any of her friends couldn’t play because they had even a sniffle, she’d want to pray for them or send a video saying she loved them. She prayed over new babies, old friends, her family, even Elmo once.

She seemed to have a different connection to the Heavenly realm. The Scripture to come like a child came alive as I watched her. Savannah had no hesitations in approaching Heaven. She didn’t feel like God had expectations of her she couldn’t meet. She didn’t question me when I told her He loved her, or even ask me how come.  She just showed up to know Him more, and her joy was the signature that His love had been received. 

I watched angels visit her in the night once. At just over 1 year old, I awoke to her saying “hi!” again and again- a new word she had just learned. I propped myself up on my elbow and looked over the side of her pack-n-play (she stayed in our room til 15 months- no shame) to find her smiling and waving at the ceiling. Not long after, a hand of light swept over her as I watched her on her baby monitor in the midnight hours. I managed to catch that one on camera. It was a quick glimpse of a child’s guardian angel, the kind Scripture says always see the face of the Father. And, most remarkably, I watched her worship grow. From tiny newborn toes that twirled to match different rhythms, to little infant arms that shot up in the air when worship came on, to a toddler who closed her eyes, tilted back her head, and soulfully belted out the words to top Christian radio hits and, finally, a newly independent free-stander who was motivated to learn to dance and balance so she could keep up with the kids’ song “Hosanna,” Savannah proved at every age that she was made to worship. Her connection to music was more profound than any child’s I had ever seen before. She didn’t just enjoy music. She felt it. There were certain songs that would leave her in tears. Justin and I- feeling like we must have missed something- would desperately try to understand what could have happened to have left her so upset. It would take many times of hearing the same song, weeks apart with the same reaction, before we’d eventually catch on. Other songs would get so stuck in her head that she’d request them from Justin and I or be caught singing them to herself over the baby monitor late at night. There was no question. Music was the way she was made to connect with her Father, and watching her step into it with age was nothing shy of mesmerizing. (Since she’s passed, I’ve had a dream of Savannah singing. I could tell that it was her voice. Some part of it sounded so familiar and yet, I could tell there was a new maturity and depth to it that it did not possess when my arms still held her here.)

Nothing mattered more to me than Savannah developing this deeply personal relationship with Jesus. It was the priority of my stay at home mom journey. I knew that only Jesus could answer the questions I hoped never came up… questions of why her and why hadn’t a healing come yet. Only Jesus could comfort her and make her brave as she grew mature enough to understand more and more. And only Jesus loved her more than we did. I hoped we all could rest in that when none of it seemed to make sense. 

Every night- after a bedtime routine that started as one hour and eventually stretched to many hours because of the fun we found in it- we tucked Savannah into bed and she’d remind us to pray. A pinboard near her bed held index cards with handwritten scriptures. Justin and I would lay our hands on her together and declare these scriptures over her life- sometimes with  a deep gratitude, other times with a desperate plea. 

As Savannah grew older, her personality really came alive. She is a jokester, through and through. It started before she was even verbal. She’d lift a single finger and lock eyes with me as she slowly and deliberately lifted it to her nostril. Her eyes seemed to tease me the whole way, as if she knew my reaction was going to be to reach out and pull her hand down from her nose. I’d just pull it away and she’d shove it back up there, laughing like she couldn’t be stopped. It was even better once she could express herself.  I’d ask Savannah who her bestie was, and she’d tell me “Daddy” with a gut-busting laugh. But pass her to Justin and have him repeat the question and her answer was suddenly “Mama,” same laugh. I’d put my hand out for a fist bump and instead she’d take one hand to hold up her stuffed animal’s paw so she could fist bump him with her other. I’d ask for a kiss, and she’d twist in my arms to offer one to anyone else in the room. Sometimes I’d steal one anyway. She’d make a show of wiping it off. I don’t remember how it even started, but I’d blow on her and she’d dramatically fall backwards like I’d knocked her over. She wore training underwear on her head as an ordinary accessory, held carrots up to her nose as she helped in the kitchen and declared she was Disney’s “Olaf,” and pointed to characters in One Fish Two Fish and compared them to how quiet she was and how loud the baby girl we were fostering was. Savannah just made everything more fun. I had never laughed so much in my life. True belly laughs. The kind you don’t care how abruptly they come out or what they sound like because you’re so in the moment.

(A side note about the foster child. Surrendering my hope to give Savannah a sibling was difficult for me. I wanted to give Savannah the experience so badly- and of course my heart had hoped for a big family all my life- but I was scared that I would not be able to meet Savannah’s many needs with another child to give myself to also. I worried about another someone little being dragged to doctors appointments or living in a Ronald McDonald House if it ever came to that. I wondered whether it would feel fair to either child. So, Justin and I made the decision to foster children instead. We figured this would be a way to allow Savannah to experience growing up with a sibling at the same time that we were helping a child who was in difficult circumstances of their own. Maybe sitting in a couple doctor’s appointments was still better than sitting in a case worker’s office. We knew we had so much love and prayer to offer. And if we got in over our heads, there would be someone to step in and help. Respite families, resources, and- a last resort- releasing them to the care of another if we just couldn’t keep up. We had only one placement. A sweet 3 month old girl. An absolute dream. She stayed with us for a week until someone stepped up to take in both this sweet girl and her young mother too. We loved our time with her- Savannah especially- but we could quickly see, even the best baby was just too much for us in this season. I prayed for God to help me release my dream for more so I could give my all to the beautiful one He’d chosen for me.) 

As Savannah’s personality grew, I knew it was becoming time to get her out of the house more. If she wasn’t going to have a sibling, she deserved friends to see regularly and not just at the occasional play date. She was ready to socialize and, as sad and as scared as I was over it, that meant she needed the tools to be able to advocate for herself. She needed to be able to explain to other children what her tube was for or how her legs were still growing strong to walk. She needed to be able to ask adults for help or tell them how to reach Justin and I (not that I planned to leave her anywhere alone for a million years). We made up songs for Justin and I’s phone numbers so she could remember and communicate how to contact either one of us, if she ever needed to. We practiced responses like “my tube helps me eat,” “I need help,” and “I need a break.”  Savannah learned how to hold onto her tube so it couldn’t be pulled when little ones came close (something we learned the hard way as we had tried out kids church at an early age). And when we felt we were somewhat steady and she was antsy and ready, we set out into the world. Covid was still out there, but we knew Savannah only had this one childhood and we refused to surrender it in fear. We were stumbling and learning on our feet. We’d never been parents before, and certainly never medical parents navigating a global pandemic before.

We started by adding a few new things that we could do weekly. The first was swimming lessons. Starting swimming lessons was huge for us because it’s what helped me understand how we could begin stepping into both the childhood I dreamed of for Savannah and the motherhood journey I dreamed of for myself. 

Shortly after we had brought Savannah home from the hospital the second time and had her dedicated, I had an honest conversation with God. I remember asking Him, “How am I going to do this?” I knew her life held great purpose from Him, and I knew the promises of His Word from my own healing testimony. I could gather the Scriptures. I knew how to stand on them for her. He’d do the rest. But how could I live out my faith in between those moments of sink-to-my-knees, cry-out-my-eyes, call-out-His-name prayer closet sessions? What would it look like to take my stance in my bedroom- standing and shouting, pointing my finger at an invisible enemy, boldly declaring God’s Word over my family- and then to slip back out into a world where I was responsible for so much? So I cried out, “What will it look like to walk this season out in trust, even as we face trials?” I’ll never forget His answer. “What would it have looked like otherwise?” Permission to live as freely as we would have even without the news we’d received.

Swimming lessons were my first opportunity to step into the revelation. A friend’s mother-in-law was a certified infant swim instructor. She was going to be teaching her granddaughter (Savannah’s closest friend) in her home pool twice weekly, and she invited us to be a part of it all. I wasn’t sure how to navigate the feeding tube tape getting wet,  but I packed a lot of extra to have on hand if it started coming off. I wasn’t sure how Savannah’s delicate heart and immune system would handle the water’s temperature, but I spoke up and my friend and her mother-in-law made no delay to crank the heat and help me to have warm towels assembled. They passed her around in the pool, loving on her and encouraging her growth, helping me keep an eye on her color (ensuring she wasn’t turning blue), giving me a few minutes here and there just to take it all in. I was learning there were people out there who wanted to support us. I just had to learn to ask for it again. I had to trust that not everyone would treat us the way we had been, and that it was okay to talk about what was still hard. And I’m so glad we did because these swimming lessons, the next session which continued the following summer, the love of the water and all the future pool days with friends they inspired were what physical therapists told us made all the difference in building her core strength and helping her to finally walk.

After swimming lessons came library story time. This was one of my first opportunities at allowing Savannah to interact with other children. Children who had not been exposed to or prepared for her difficulties, and whose parents did not already know our story or feel a responsibility to rush in to help us or make us feel welcome. It’s embarrassing to admit now, but I was learning to show up and to engage in the moment without explanation or apology of any kind. To simply let Savannah be Savannah. 

I was just so protective of her. If anyone ever said anything to Savannah directly that hurt her feelings, I couldn’t promise that I wouldn’t explode. In the past, I had tried to rush ahead to explain ourselves so people would be kind with her, but it was sinking in that her self-esteem was developing by the day. She was listening and watching, with greater understanding than ever before. I didn’t want her to think she owed anyone an explanation, ever. The people-pleasing I once thought had been an indicator of a pure faith had worn away. In its place was now personal boundaries and many, many prayers that people would have some sense to respect them.

Back to the library. I’d use the online order function to have a stack of books all built around a common theme- whatever I was teaching Savannah about that week- waiting for us to pick up after class. She’d enjoy her structured time with the kids, come out to the main library for some free play with them, then pick out a book or two she was excited about to bring home with the others I’d chosen ahead of time. I met many other stay at home mothers who made us feel welcome, asked questions, and encouraged Savannah. One even invited us to her home when her four-year-old daughter showed a special, motherly heart for Savannah. She planned our day around Savannah’s medical schedule, had several developmentally appropriate play activities set up for us when we came, and sent us home with some fine motor type toys that Savannah showed she needed extra practice with. Her daughter was so eager to share them with her. I still cry to remember their kindness. They likely kept a much different pace than we did, and yet they stopped to sit with us. To make sure we knew we were seen.

We were having so much fun being out of the house that we began to take therapy goals to local parks and the children’s museum. Every time that Savannah went to physical therapy, I sat closeby studying her therapist’s hands. Where did she place them to support Savannah? How long did she leave her in each position before she knew whether or not Savannah was ready to be pushed? What kind of tools did she need to create the opportunities she had to practice? And did those tools found within a pediatric clinic have to be purchased to replicate the experience at home, or could they be found naturally around town in places far more stimulating to her? Could I trust myself to take Savannah out for some of childhood’s most classic experiences and still meet the goals I knew we could spare no time working toward?

 My mind suddenly saw the long sidewalk Savannah could walk to get to her beloved swings, the angles of a playground staircase she could crawl up for core strength, the opportunity to pull to stand at a large car ramp within the children’s museum, the effort it would take to practice walking while pushing around a tiny, loaded shopping cart in the museum’s grocery section, the joy in chasing down and squatting for silk scarves shot out by large fans, and so much more. While I had once struggled to maneuver a small baby, a diaper bag, a feeding pump backpack, and a cooler of meds and milk, I was now capable of so much more. I could do anything if it meant it would help my sweet girl. Each night, I planned the next day out carefully. When would Savannah have to wake, which parts of our day could she walk, when would I have to run the pump, what meals could I pack to give her oral eating opportunities even if we were out, would we be back for her usual nap time and, if not, how did I intend to adjust for that? I wasn’t intimidated anymore. I could give Savannah the childhood she deserved and still help her meet her many goals. God was with me. 

All of this led me to begin printing a blank monthly calendar. Using a local kids and family magazine that I’d pick up from the public library on our story time days, as well as a bit of online research about local county events, I’d write in anything that looked even slightly interesting. I’d use this calendar to fill in our family calendar around Savannah’s standing appointments.  We couldn’t wait for the weekends when Justin was home and, together as a family, we were off to a transportation exposition with all kinds of county vehicles for kids to explore, a family day at the Conservancy Center with nature themed activities, fall festivals, holiday parades, free zoo days, the Daniel Tiger children’s museum exhibit that traveled to a city a few hours from ours, the beach, you name it. Anything that allowed us to spend more time making memories together. And, some days Savannah woke up and asked to stay “at Savannah’s house,” and that was fine too. We were flexible. I was prepared to be present, wherever that was.

And, of course, we never missed celebrating a special occasion.

Around the time that we were preparing for Savannah’s second birthday we brought up the idea of going to Disney World. Savannah had a small first birthday in our townhome at the height of Covid. Only her great grandmothers, grandparents, aunt, and uncle had come. Now she was turning two and still not walking which limited the ways we could celebrate. Also, it was pretty painful to see her beside other children her age and all they could do that she couldn’t yet. We battled that on a daily basis already, and decided we did not want to give those comparisons room on a day that should be dedicated only to celebrating her. It had been an inside joke since we had lived in the cardiac intensive care unit that Justin was going to rent Cinderella’s castle for Savannah. Before she was born, we had debated the age that a child might be ready for their first Disney trip. I had said two years old and Justin had said much later, once they’d be able to remember it. (Now, take into consideration that we only live a few hours from Disney World and have discounted tickets as Florida residents. So, for those of you debating when to fly in from other states, this decision will likely be much different for you.) However, the longer Savannah stayed in the cardiac intensive care unit, the closer Justin kept moving up the date of that first Disney trip. Eventually he was sharing with the floor that he would rent out Cinderella’s castle for her just to have her home. I brought this to his memory and suggested a Disney trip for Savannah’s second birthday. Justin said yes, and soon it was planned. Savannah already loved Moana, but we began introducing her to the other princesses and their songs to prepare her.

A week shy of our trip, I spiked a fever. Savannah was whisked away from me until I could be tested for Covid. Although Justin was still going to work every day and Savannah was in and out of different therapy clinics, the stay at home mother was the one who first tested positive. We were shocked. We had taken as many precautions as we could to avoid this day, short of barricading our doors and refusing to allow Savannah to leave the house and live her life. (We later found out that my grandmother had contracted it from her chiropractor. He had closed down his practice when he found out he was positive, but my grandmother was asymptomatic other than intense back pain she was experiencing. She had thought that the severity of her back pain was an effect of not being able to go to her regular weekly appointment. It turns out Covid attacks the point of your body with the most existing inflammation. We had eaten a family dinner with my grandmother- who lived in a guest house adjoined to my parents house- just a few days prior. Once I tested positive and my family had a better sense of what was happening, an ambulance was called for her. She was admitted to a Covid unit.)  

Justin hunkered down at my parents house with Savannah (before all of this with my grandmother), preparing to spend the next ten days apart from me. The next morning he discovered Savannah had a fever too. Our worst nightmare. Immediately he took her to her pediatrician who put a plan in place. Over the next ten days, Justin drove her into their office daily for them to listen to her airways and check her heart. She would help us decide if we needed an emergency helicopter ride to the hospital with Savannah’s heart clinic. We were so thankful for quickness to act, and her wisdom not to send Savannah to the hospital right away. That would have meant our family was back to living between two cities at a truly traumatic time. If Justin also tested positive (which he soon did), he would not have been able to even stay in her hospital room with her. At home, we kept a close eye on her oxygen saturations, energy levels, and ability to tolerate tube feeds. It was so much work on top of our own rest- especially because Justin developed Covid pneumonia- but no one could come over to help us. We were exhausted and terrified, surviving our days with ceaseless prayer. 

Soon, as suddenly as the fever had struck, Savannah was back with all the feistiness of a fresh toddler and we knew we had just experienced a miracle. Justin and I were still struggling to get back on our feet, but we opened Savannah’s birthday gift a little early- a new water table- and let her slingshot the plastic balls across the living room to keep her preoccupied for a few more days while we rested. I took a few birthday pictures of her in the yard. It wasn’t perfect, but she was home and she was alive, and we were so happy. The fog had started to lift. 

And then we got the call. My grandma had died. Two days later, we got another call. My dad was being hospitalized in a Covid isolation unit. He was on the same amount of oxygen support my grandma had been. Just like in that intensive care unit, we were back to feeling isolated and alone. Beyond our front door, the world continued to spin. No one seemed to notice that we were crying out for mercy. Did anybody even care? Could we ever feel safe again? Our hands-on support already felt so small. Our family had already been living in survival mode. What would happen if the Lord received my dad home the same way He had my grandma? I had the deepest understanding that the only way any of us were going to make it through this was together. That became my desperate prayer.

Two weeks later, my dad came home on oxygen support. Within a few more weeks, he weaned off. After the dust had settled, my parents offered Justin and I a date night so we could step away and process everything that had just happened. It seemed we were still living in survival mode. Maybe that proved to be wisdom because, that very night, while we were out on our date, we got a call to come home early. My dad was taken to the emergency room again. This time it was for an entirely different issue. He went through surgery and, only by God’s grace, came home again shortly after. If life had begun to feel the tiniest bit secure in the last two years, all of that was gone now.

Disney had been gracious enough to grant us an extension to use our Florida resident passes without having to pay any more. Now we had a decision to make. Would we still go, or were we so gutted that we’d revise the entire approach we’d had to parenting well? It took time but we reasoned that God had protected Savannah and our family, fear is the spiritual assignment of a cruel enemy, and Savannah now had strong antibodies anyway. Maybe this was as good a time as ever to step back out and keep believing for an abundant life in Jesus. We rescheduled our trip for Christmas and concluded that it would be even better than we had first planned because now we’d get to see the decorations and special holiday shows.

Once at Disney, we spoke with their adaptive services department about getting a pass that treated Savannah’s stroller as a wheelchair. Not only did this allow us to take it in line with us so she could be hooked up to tube feeds between rides and we could avoid falling off schedule, it also allowed us an entirely separate line with shorter wait times. When they saw her feeding tube, Disney also offered additional adaptive services to help us keep Savannah socially distanced. They left the cars on either side of our own free of guests to give her a little extra room. Savannah was having the time of her life.

I knew that Disney went over the top to make the experience magical for every child, but watching the ease they approached adaptations with sent me home inspired. I had been looking for all the experiences I could offer Savannah within her current skill set. I hadn’t even considered how we might be able to adjust other experiences to include her. I had been showing up to the library story time thinking it was brave enough just to be there, but now I was finding a boldness to make calls and better advocate.

With a new tenacity, I made my first call to the Community Bible Study (CBS) offered at a local church. I had always wanted my children to grow up in church, but the children’s ministry at our home church, through no fault of their own, was not prepared for Savannah’s care. I had never felt comfortable enough to leave her there alone and, even while Justin and I took turns supervising, we could see that she required almost a 1:1 caretaker to child ratio. She was just independent enough to get herself into some standing positions, but she was still wobbly on her feet and lacked the strength in her arms to catch herself if bumped by another child. Every fall ended up being a hard fall to the head for her and absolute heartache for me. Not to mention other curious children pulled at her tube, as I mentioned before. We kept her in the main sanctuary with us for as long as she’d allow. She loved worship, but when the sermon began she quickly lost patience and no amount of sticker books or screen time was enough to bribe her to sit peacefully. Another church in town had something called a “bubble room” we decided to try. It was a special needs ministry that met kids where they were at. For those kids who needed a quiet room with sensory experiences, they could offer that and a simple Bible story. For those kids who could keep the pace of their age appropriate room if only they had a little extra help, they did their best to pair with a teacher (either an adult or a middle or high school aged student, depending on availability). I really think Justin and I might have been comfortable with this option if this was our home church and we knew these caretakers more personally. But, with Savannah on a heart transplant list and only newly formed relationships with the leaders at this new church, we just weren’t ready. It took me a long time to realize that every mother experiences this hesitation to leave her child for the first time. I had spent all these years thinking it was only the medical challenges that gave me such hesitation. I think knowing it’s something that affects us all helps, in some strange way. The Community Bible Study program I had heard about was less of a church service and more of a school setting. There was a three year preschool level curriculum the children followed, and Savannah would be coming in at year one. It seemed like perfect timing. Typically, while the children attended their two hours of class a week, their mothers would gather for a guided Bible study on the other side of the building, in the main sanctuary. I contacted the children’s program director and explained our situation. I really wanted Savannah to grow in the Word alongside friends of the same age, but I wasn’t able to leave her alone yet. I had an education background and I was prepared to fill out all the necessary volunteer paperwork, even pick up additional responsibilities, if it meant that I could be with Savannah. She spoke with the CBS director and got back with me saying, if I agreed to attend the online Bible study later on Tuesday evenings, they would allow me to accompany Savannah to her classes on Tuesday morning. They just didn’t want to see me fall through the cracks. This made me love them even more. That next Tuesday, we came to observe the program and I met Savannah’s future teachers. Donna, a retired Kindergarten teacher familiar with teaching the very fine motor skills Savannah needed, and Pam, a retired pharmacist familiar with NG tube care. I just knew the Lord had been ahead of us, arranging it all.

After that, I made a call to get Savannah into a special program at the children’s museum called Mini Wonders. Once a week, toddler and preschool aged children were invited to come interact with a themed book and a new set of coordinating activities including sensory experiences, academic skills, fine and gross motor work, and more. There was a cap on the number of kids that were able to join, but soon Savannah was one of them. The educational director had understood my desire to have Savannah continue working on therapy goals alongside other children her age for motivation.

Seeing how much Savannah loved being in school-like settings like these, I began asking the Lord questions about her future education. Having been an elementary teacher myself, I knew that our public schools were some of the best in the state. Still, any public school would struggle to meet Savannah’s many splintered skills. She was still not walking independently, and not eating orally. On the other hand, she was only 2 and a half years old and knew her alphabet, could recognize all 26 uppercase letters and tell the sound they made, was practicing with beginning sounds of CVC words, knew and sorted her colors well, could count to 10 and was on her way to counting to 20, and read upwards of 15 sight words and one short level A book. And that’s not to mention the extensive background knowledge she had from all the weekly themed library books, dramatic play scenarios, and weekend trips. Name another two year old who asks to be a trapeze artist for Halloween. I recognized that Savannah still had two and a half years before Kindergarten but, even then, would I want to put her in a public school setting where she’d need to sit most of the day when maybe she’d only just learned to run and climb and play? It felt best to offer her back the wild years of exploratory play she was missing in these toddler years… And that’s how homeschool first crossed my mind.

I borrowed a book from the public library called “So You’re Thinking About Homeschooling: Fifteen Families Show You How You Can Do It!” by Lisa Whelchel. Each chapter told about a different family’s situation… what kind of educational philosophy they followed, how they structured their days, what curriculum and materials they used, whether they worked or traveled at the same time that they homeschooled. By the time I had finished the book, I realized that homeschool didn’t have to look a whole lot different from what we’d already been doing, and I LOVED our life together. I woke up excited for every day we spent together, eager for Savannah’s curiosity to lead the way to new experiences for us. I loved spending time with her and sharing the world with her. I loved getting to see it all through her bright, sparkling, and engaged eyes. And I felt confident that I could help Savannah meet her goals in a way a classroom teacher could never.

I didn’t have the professional knowledge to back me in every area we set out to accomplish together, but her goals were personal to me because she was mine. They pushed me to seek out the professionals and put aside my pride to learn from them. I wasn’t a physical therapist, an occupational therapist, a feeding specialist, a dietician, a heart surgeon, or a cardiac unit nurse, but I was already incorporating skills I’d learned from all of them in our daily life. Why did it have to be any different with academic skills? I didn’t know where I’d find friends who might help me teach her fine arts or foreign languages or who we could organize field day type events with, but why couldn’t I figure it all out on my feet? Isn’t that what the last two and a half years had already been?

I answered my own question when I found an online subscription service called The Cultured Kid that allowed Savannah and I to start learning Spanish together. Within just a few weeks, she could count to ten in Spanish, name her colors, answer some basic conversational questions, and sing a few nursery rhyme songs.  I could do this. For Savannah. I searched for the words “home school” on the public library’s database and checked out every other book I could find on the topic. A few months later I attended the Classical Conversations 2022 Practicum and even brought Savannah to attend one of their community days. She loved it, and I felt relieved to have already found a homeschool program with a built in community aspect. Not to mention, a faith-filled community. Deciding against a traditional school model didn’t have to mean Savannah was unsocialized. We were years out from these decisions, but I could see our future coming together and I felt more alive than I’d ever been. Surely this was what I was created to do. I was grateful the Lord was already allowing us to meet and learn from other families doing it too.

Now, just a few months before this homeschool practicum, I had taken Savannah to a routine check up at the admitting hospital. It was March of 2022. Savannah was exactly two and a half years old at that time. It was at this appointment that I was told Savannah’s pacemaker battery would soon need to be replaced. This would require surgery so, while she was already under anesthesia, doctors would also attempt a heart catheterization to determine the general health of her heart and decide whether it was time for her to be admitted indefinitely to wait for a heart transplant. We agreed to discuss this further and schedule the procedure at her next appointment in July when Justin could be there too (which was right before the practicum in August). The actual procedure would be planned for October of 2022. The very mention of this procedure sent me into a panic. I came home and cried desperately to Justin. I had been doing so well to find and enjoy an abundant life with Savannah. Now the inevitability of her being admitted back to the hospital hung over my head. Savannah was so much older now. She understood more. I knew her so much better than I had when she was first born, which made it even more unbearable to think of her there. How would I stand to see my girl with tubes and IV’s again? What could I say to her to help her understand? And what would I do if they wouldn’t let us come home together? 

Justin saw that I was spinning. He took me by the shoulders and encouraged me that we were going to do something different this time around. We weren’t going to write this procedure down on the calendar and spend every day counting down the days in dread. We were going to keep focusing on filling all the other days with joy, praying over each one as it came, and trusting  that God would be waiting for us when the one set aside for this procedure came up. I loved this idea. It felt right. We had reached a new ability to surrender Savannah to the Lord. He had never failed us before. Savannah was only here because He had held her through the last nearly three years. Realizing this gave us the strength to keep living and dreaming BIG.

In all the time that Savannah had been on the heart transplant list, we had not been able to travel more than 4 hours from the hospital in case a heart suddenly became available. Technically our paperwork said we’d have 6 hours to get there once we received the call, but we lived four hours from the hospital and knew there’d be time needed to pack and traffic to account for, so we didn’t push it. (Not that I wasn’t praying every day for God to heal her miraculously so that she’d never need another’s heart.) 

Justin and I had always been big travelers before Savannah came along and it was hard not to share that part of ourselves with her too. Suddenly, an idea was striking. If we lived four hours south of the hospital Savannah was listed through, what was preventing us from traveling four hours north of this very hospital? We got on Google Earth and looked for any destinations about that distance from the hospital. We landed on Charleston and Folly Beach, South Carolina. Obviously loving the Southern charm and rich history of Savannah Georgia, we knew Charleston held the potential of being another family favorite. My 30th birthday was the first of July, which seemed like enough reason to leave the state. And the Fourth of July had always been Justin’s favorite holiday. He loved the idea of spending it with Savannah in a town like Folly Beach. And so, by the night of June 29th 2022, we were crossing the state line into South Carolina for our first “Miners Family Trip,” as Savannah had affectionately named it (after Daniel Tiger’s movie about the Tiger Family Trip). 

The very next night, on June 30th, I gave Savannah a bath as we talked about my 30th birthday being the next day.  She squealed at the thought of celebrating me in this new city, Truthfully, the thought did the exact opposite for me. I had hoped coming here would help me to forget it. I had come so far in changing my mindset, but the idea of this birthday was doing me in. This was not where I thought I’d be by now. I had given up my early 20’s for my husband to find his career path and my late 20’s wishing desperately for my daughter to be free of this medical journey. Those were supposed to be some of the best years of your life, and now mine were gone. I’d given them away and I’d never get another chance at them. The thought of carrying this struggle from my 20’s into a new decade was more than I could bear. My desire to have more children was still strong, and the thought of turning 30 and running out of time was debilitating. Would I miss out on all that I dreamed would fill this decade too? When would enough be enough? I sobbed myself to sleep. 

That next morning I woke up and decided something had to change. I thought about what Justin had said about not watching the days on the calendar in dread. I thought about how hard we had worked to get here with our girl. I looked around at all I had to be grateful for and, while I was still sad, I was different. I was ready to be present with my husband and my daughter. I was ready to live a moment at a time. For one whole week, it was just my little family and I, the ocean breeze, fried seafood, kissable, sunburnt cheeks, and strolling through history districts. And when those fireworks lit up the harbor sky on Independence Day, I looked over at Savannah, her hair in pigtails and a red, white and blue pinwheel held up to Heaven, and it felt personal. Like we were learning our own sort of independence once and for all. An independence from the world and its timelines and expectations and comparison. A dependence on only God. We’d come so far over the last year, and this trip felt like it had solidified the things we’d been learning to stand in.

When we came home, I got right to work on planning Savannah’s 3rd birthday. Savannah had never had a true birthday party with family and friends because it had always been too painful for me to imagine it being her special day and yet none of her friends slowing down to sit with her. Savannah had just begun walking, but was still very shaky. Thankfully, she now also loved swimming and could spend just about all day in a pool. She was growing so strong kicking from end to end, and could follow her friends around anywhere in their little floaties. It was finally something they could do together. She was ready and, after my birthday revelation in Charleston, I thought maybe I should be too. Savannah picked the theme- mermaids- I wrote the guest list- just immediate family and the friends we saw regularly- and a week before her third birthday, we gathered beneath a pool-side tiki hut to celebrate what a splash she’d made in our hearts, and the world. As friends and family sang happy birthday,  I held her up in my arms to see them, and I whispered in her ear… “This is all for you. Look how many people love you.”  

After Savannah’s birthday, I knew I was really pushing it, but I wanted to get family photos taken. Money had been tight throughout these years living with a single income, medical bills, monthly hotel stays for out of town appointments, and physical and occupational therapy needs, but God had always been faithful. (In 2020, when I had resigned from my full time job teaching to be home with Savannah, I had an exit interview. As a last minute thought at the interview, I asked to be contacted if anything one day a week ever became available. The woman conducting my exit interview laughed a little on the phone and told me that almost never happened, but she would gladly give me a call if it did. By that September- less than a year later- she was calling me to tell me she couldn’t believe it but she had a one day a week offer. That one day a week job alone paid my mortgage for all three years of Savannah’s life.) Still, we had grown to live content with a lot less, and I knew now asking to go buy new outfits and to book a photographer was going to be a lot. I just wanted to capture Savannah finally being able to stand and walk independently. This was a milestone we’d been working towards for all of Savannah’s life. Another check on the list of things we were told she may never do. As I called my friend to ask about pricing, she offered to gift us the session.

This was the third photography session we’d been gifted by three different people. The first had been a newborn session in the cardiac ICU by a perfect stranger. This generous stranger attended church with a friend that lived near the hospital, heard our story and got my number from my friend, and texted me to schedule the shoot right there in Savannah’s hospital room. The second had been a newborn session when we’d first come home at our church’s barn property. The third, a mommy and me session when Savannah was a year and a half, and then there was this one. Even the photography sessions I did purchase had been greatly discounted by a friend just as great- both talented and compassionate. Through each of these women, I have learned so much about using your gifts to bless others where you can, and what an impact you can make even when you feel like you have little to offer someone enduring tragedy.

I shared my vision with my friend for Savannah standing alone and holding a giant “3” balloon in one of the photos (signifying that she was 3 years old when she met this milestone). She told me where we’d meet, and then she made it happen. These family photos were taken only a month before Savannah passed. They are the most recent formal pictures I have to remember my daughter by- a truly irreplaceable gift.

By the time we made it through the Charleston trip, the birthday party, and the family photos, the date of Savannah’s procedure had snuck up on the calendar. It was time. I struggled with how to talk to her about it. For days and weeks before we left, I tried to explain to Savannah that doctors’ jobs are to help. I never told her what they were going to help with specifically. I didn’t know how. We prayed regularly for Jesus to help her heart, but I had never used the words that there was anything wrong it. We had always talked about Jesus helping my heart in the next breath, so she never felt any different. And Lord knows how much my heart needed emotionally. Together Savannah and I read Daniel Tiger hospital-themed books and watched Doc McStuffin episodes to try to explain what she might see. She laughed and played with her own doctors kit, re-enacting the scenes she’d seen while I struggled to hold it together. 

Once at the hospital, I negotiated with doctors that my daughter would not ever have to reason through being separated from me. They would not wheel her into an operating room conscious and alone upon a stretcher. It was my arms that carried her into the operating room that day. My hands that pressed the anesthesia mask to her face and my shaky voice speaking words of peace in her ear as she thrashed, though I felt no peace myself. It was only a few moments and then the fight was over. She was asleep. I stumbled my way out of the sterile room into an equally stark-white hallway. My wide eyes watched for the waiting room as I wandered down it, desperate to find Justin. Together we slid down cold, plastic chairs beside my parents- who had been with us every step of the way since Savannah’s birth- praying from the waiting room. And a few hours later, Savannah’s cardiologist came out to let us know everything had gone well. The new pacemaker was large enough that the battery would last for several years and Savannah’s pulmonary stent, once inserted to restrict blood flow to her lungs, was able to be ballooned enough to allow greater blood flow now that her body was bigger. Her blue-tinged fingernails had become more pink in mere minutes. It wasn’t a permanent fix, but it showed promise that we’d get to bring our girl home again.

Within two days, Savannah was recovering well and we were being discharged from the hospital. I could have cried with relief. She was coming home and we’d soon be back to the life we loved. The heart transplant list still hung over our heads and all the trauma that came with it, but this bought us more time. Time to grow stronger. Time to keep meeting goals. Time for God to keep slowly and subtly shifting the course of things like He’d been doing since the day she was born. Time to keep watching this miracle in motion. 

 Before we left, a newly hired cardiologist came to our room to meet her. He mentioned that he had heard a lot of talk about Savannah and had to see her for himself. It was uncommon for a kid in cardiac care to spend so much time at home without being back and forth for extra support during colds and flus… especially one with a file like hers. The hospital staff was used to watching these kids grow up. They saw them regularly.

And then that doctor told us something that shut down every twinge of fear or doubt I’d ever felt as a mother. I remembered the day I stood before a doctor, my daughter newly listed for transplant, and announced that I’d be taking her home so long as she didn’t require mechanical intervention. I didn’t have anything to base that decision on but my mother’s intuition.  And as a first time mother- and medical mother, at that- I didn’t know how to depend on intuition as well as some others. I was always tempted to defer to what a professional (in any field) said was best. Taking Savannah home was the first time I’d ever known deeply what she needed and said so boldly. And now stood before me one of those very professionals telling me that I’d chosen well. So well, in fact, that the floor staff had agreed to send more children home to live the full, abundant lives Savannah had been. It was a glimpse of a ripple, and I found myself so satisfied by the thought that something bigger than us was happening here. Surely this ripple couldn’t be the only one. 

Savannah’s abdomen was a little swollen as we took her home, but our suspicions had been only that she was a little constipated. It must be painful to push with a healing incision site along her lower back. We had her checked by nurse practitioners and got a stool softener prescribed, and then we were on our way home. For the next week we determined we would lay low and let Savannah rest. She slept a lot, so my days were spent mostly holding her on the couch and letting her sleep on me. It comforted us both to be near to one another. When another day went by without a bowel movement, I gave Savannah some prune juice (not even the stool softener yet). She was still tolerating her tube feeds well and there was no fever spike, which were the two things they told us to watch for in addition to her oxygen which we checked daily anyway. So I wasn’t concerned… until Savannah started having the runs for the next several days. I struggled to understand how a single syringe of prune juice shot down her feeding tube could have given her loose stools for so many days. Soon, she had a severe rash from so many runny poops and having to wipe her again and again. She was raw and miserable… on top of healing from surgery. I called the cardiac clinic at the hospital to describe what I was seeing and, after a few more days with no improvement and a still swollen abdomen, we took Savannah to the local emergency room. This turned into a transport back to the admitting hospital.

It turns out that Savannah had contracted not one, but two different viruses during her short two day stay. Rhinovirus, a common cold, and Noroviris, the virus known for hospitalizing even grown men for dehydration. Her system was already weakened from the surgery, so she was admitted again for respiratory and IV support as she now kicked these viruses. Doctors watched her heart, liver, and kidneys closely. They struggled to keep her electrolytes balanced with the amount of water she was consuming due to dehydration. They also talked all over again about whether this was the time that she should stay admitted until a heart became available. It felt so unfair that this could have happened to her when she was strong enough to send home just the week before. At home it was easy to forget sometimes just how fragile Savannah was on the inside. Back in the cardiac ICU though, the facial expressions and daily reports of the doctors reminded me of just that. 

Another week (or two, it’s hard to even remember now) went by and Savannah had largely overcome these two viruses. Even on a weakened immune system from surgery. This girl was an absolute warrior. So, incredibly strong in a way she should have never had to be. She was back to talking after spending the weeks since her surgery largely nonverbal, and she was back to eating her favorite food by mouth- avocado. She was also back to those typical three year old ways of thinking. You know the ones. The ones that want what they want, and won’t be told otherwise. Any other child would have loved that they were being freely given Gatorade and juice, but Savannah was our kid that only ever wanted water. As she was denied water to keep her electrolytes in balance, she became increasingly verbal about wanting to go home, which was miserable for me too. Believe me, I wanted to take her home more than anyone else. (Justin and I had been taking shifts with Savannah and then getting sleep in a nearby hotel. Not only was it expensive, but it was exhausting. What was more exhausting though was getting a call from the Ronald McDonald House that a room had become available. While it was a blessing to have a free place to stay, moving back in felt all too familiar. It had been three years since we spent 3 and a half months living there, and I wasn’t ready to go back. I didn’t want to believe that Savannah’s needs were serious enough to need this stay again.) We did our best to ration Savannah’s water throughout the day but, as she began to feel better, she expressed greater frustration. She was frustrated with being away from home, out of her routine, and without the comforts she was used to- even the simple comfort of her water cup. And so, she started pulling at her feeding tube when she wasn’t getting her way. Over the course of just a couple days, it had to be replaced close to 10 times. Each time that it was replaced, an X-ray was required to check that it was in the proper place. I worried about the amount of radiation she was receiving but felt helpless to do anything about it. She was miserable and, more than anything, we just needed to get her home.

By the weekend, Savannah had been successfully weaned off all respiratory support and remained on IV medication only because the cardiac team had decided to change one of her home medications. The IV medication acted like a bridge as they weaned one oral med down and gradually increased the other. Once they’d traded off, she could be taken off the IV medication to come home. It was another miracle, and we all knew it. There had been so many factors for her to overcome all at once. So, on Sunday, Justin asked whether he should head home and back to work. My parents had driven up, and my mom had offered to stay with me in the Ronald McDonald House so Justin could drive home with my dad. Justin was hesitant to leave but he’d been out of work a few weeks at this point, and I felt comforted that doctors were telling us we’d be discharged by Wednesday at the latest. I pushed him out the door and told him we’d be right behind him. There was nothing to worry about.

And I let my guard down against a cruel enemy. That night was an awful night of sleep, with Savannah waking every half hour to hour pulling at her tube and demanding to go home. I crawled right up into the bed with her where I could cuddle and comfort her, and where I could more quickly pull her hand away from that tube when she tried to yank it out. Eventually a nurse bridled it to keep it from being able to be pulled. All that did was make her nose bleed every time she yanked. Her bed sheets were covered in blood, and I felt weary from the spiritual battle.

By morning, Savannah had finally fallen into a good, deep sleep and I chased the echocardiogram team out of the room when they came for their early morning scan to give her more time to rest. As I stepped into the bathroom to get dressed and brush my teeth, I heard Savannah’s nurse come into the room for her start of shift assessment and to get the feeding tube going with that day’s first feed. I finished up and stepped out. That’s when I felt it. I had hardly laid eyes on Savannah’s feeding tube, all primed with fresh milk and hooked up to run, when something inside of me seemed to lurch forward and scream “No!” I had never experienced anything like it and didn’t know what to make of it. 

Very early in her life, Savannah learned that if she coughed she could usually get her way. Coughs often triggered a gag which would lead Savannah to throw up, and throwing up contributed to weight loss which looked like failure to thrive. Weight was closely watched by the cardiac team because it could be used to determine heart health. If the body was working too hard to pump blood, it would burn more calories than could be consumed. This meant when Savannah coughed, we all came running. And she usually got whatever it was she wanted when she was very small to avoid situations like these. As she grew older, we had to balance being able to say “no” and having her cope well with keeping an eye on her weight and overall health. In the cardiac ICU, they did not weigh all these factors in the same way. As a precaution, every throwing up episode, or “emesis” as it’s called there, is treated as though it’s a symptom of heart failure. Sometimes our admission had been bumped up by several days after an emesis episode, just in case.

When I first felt the lurch inside and the urgent “no!” my eyes rapidly scanned Savannah’s hospital room for what could be out of place. Her vitals looked good. The nurse had managed to hook her up without waking her up. She was in a deep sleep, so there was no way she’d yank at her tube, or cry or cough to go home and end up throwing up. I reasoned that it was probably the best time to run the pump- while she was asleep- and I didn’t go to it and stop it. As tired as I was from the brutal night before, I never even thought to ask God for wisdom about what that tug was. Never even considered it could have been His Holy Spirit begging me to partner with Him for our own protection. And without the X-ray we’d eventually get, there would have been no way to know that, internally, Savannah’s feeding tube had come out of place. 

Not a half hour after Savannah’s tube feed finished, her nurse came in and I told her that it had finished and I’d turned it off and unhooked her. As her nurse and I spoke about how glad we were to see her getting good rest, my eyes stayed on Savannah. She was sleeping on her belly, her head turned away from where I was standing. Suddenly I was aware that I couldn’t see her back falling and rising with her breath, like I’d been watching for all her life. As quickly as I could mention it,  our nurse ran to a button on the wall and the code alarm I’d heard so many times before and held my family through now sounded from our room. I watched in horror as hospital staff bounded down the hallway and in through our heavy sliding glass door. It seemed like I was watching the scene play out in slow motion. I couldn’t process what I was seeing. I couldn’t make it make sense. I was escorted out of the room as I watched a nurse take Savannah by the legs and aggressively flip her body over to her back. And as compressions began behind me, I managed to find words for what I thought I’d just seen. I sent a series of three short texts in the family group chat.

Pray now.

They’re doing CPR.

She coded.

Justin immediately called for his own clarity about these three short texts- he had only left the night before because there had been the promise of coming home by Wednesday-and  I fell down in the hallway just outside her door and screamed that I didn’t know what was happening before erupting in violent shakes and sobs.

 I had watched many hysterical moms over the years and always wondered if they had big personalities in their everyday lives. If they did everything loud. Maybe quiet shock hit the introverts and screams came from the extroverts. The truth is, you never know quite how you’ll respond when you watch your world blow apart. I’d now experienced both.

A friend I’d made on staff ran toward me, fell to the floor on her knees, and took my hands in hers. And as my phone dangled in the very hand she held, Justin hanging on whatever words he could make out, she went to war saying the only words that even matter in a moment such as this one. The Word of God, now bookending the years of this little girl’s life.

 I was eventually ushered into the medical review board’s conference room in a back hallway. It felt like an eternity by then, but it couldn’t have been more than 5 minutes. I knew from my own experience holding my family through others’ dreadful screams that the staff never let them last long. There was always a plan to hide the fateful screams of misery and preserve hope for the other families in situations just as hard. I stayed in that room for an hour before a nurse practitioner came in and said Savannah wasn’t responding to chest compressions and gave me the choice between holding her as we let her go, or hooking her up to ECMO (life support- a machine that mechanically removes, oxygenates, and replaces blood from a person’s body). And when I responded to give her every chance- my husband wasn’t even there yet- she questioned the fairness of it for Savannah’s sake. As if everything I had ever done hadn’t been for Savannah’s sake. It was the only way I knew how to live… defending this gift of a girl I’d been entrusted. Laying down my own life over and over again for hers.  

She went on, saying that Savannah might never be the same. That there was no way to know if Savannah had suffered brain damage from lack of oxygen, and she might not be the same little girl I had grown to know. Maybe it was “most fair” to Savannah, she said, to let her go. Her words brought me right back to that maternal fetal medicine practitioner’s office when I was first nudged toward termination. I didn’t know who Savannah would be then and, if what this practitioner was saying now was true, I didn’t know who she’d be when she came through this either. But none of that had ever mattered. I never had any say in who Savannah was going to be, and nothing she could have struggled with would have ever made me love her or fight for her any less. She was mine. That was what mattered. That’s all that has ever mattered to the Father who loves us through all our own mishaps and mistakes. We’ll never see His back, and I was sure Savannah would never see mine.

It was obvious to me that this woman had never loved anyone so purely before.  I managed the words, “that’s not fair,” understanding if I attempted any more than those, they would be all the wrong ones that came out. I know that restraint was the power of the Holy Spirit to care about protecting someone’s faith-walk even when you’re furious with them and your own. 

I sat in that room for another five hours after that, and I never stopped audibly praying for any of them. I covered an entire whiteboard in every scripture I could think to declare over Savannah, hopeful that others would see them and say them out loud with us. I didn’t want anything else spoken. There’s power in the Word. My mom- who’d been at the Ronald McDonald House helping me with laundry when she’d gotten the text- now sat with me as doctors and nurses, pastors, our favorite physical therapist who was more like a friend, all came and went from that conference room. I tried to explain what had happened to our physical therapist. To retrace each part of the morning routine in my mind, searching for what was off this time. After I’d been through it at least three times- carefully, methodically- our physical therapist rubbing my back all the while, it occurred to me that I was actually spiraling. None of my rambling was making sense to anyone else. And, looking back, I’m not even sure it made sense to me.

Soon Justin and my Dad were back with us. The drive from our hometown was four hours, but it didn’t feel like that much time had passed before they showed up. I’m sure it would be a different story if you were to ask one of them personally. We all went in to see Savannah together once they arrived. The walk from the conference room to the new room Savannah was set up in spanned an entire hallway. The main hallway through the cardiac unit, which passed the nurse’s station. As we made my way down that hallway that day, it felt like every head in the entire hospital turned to watch us pass by. I could not bring myself to pick up my head to look at any of them. To me, this was like walking down a New York City sidewalk on an early Saturday morning, high heels in hand. It was a walk of shame. I could not get over the feeling that I had failed Savannah. I had spoken openly about standing in faith for her. “Where had I gone wrong?!” I thought, not realizing I had taken my eyes off the Father somewhere in this faith walk if I could have even thought like that.

Every stark white light in Savannah’s room was on as we approached it. Machines filled most of the floor space, leaving one small corner to sit or stand. Doctors and nurses flooded both Savannah’s room and the hall just outside it watching monitors, speaking in mumbled voices. My head pounded from the little sleep I’d gotten, the hours I’d spent crying, praying, and recounting my steps, and going the whole day without food or drink. The brightness of the lights and the steady beep of the heart rate monitor made me feel like I’d throw up right there with all of them around.

Over the next 24 hours we rearranged amongst ourselves to make sure Savannah was never alone. We had no idea how long this situation would last, so I stayed with Savannah until 2 or 3 in the morning and then my miracle mom and dad sat with her throughout the remainder of the night so I could get some sleep. They prayed over her, played videos of her favorite memories in her ears, and reminded her she’d never be alone. 

This is what makes me proud to be a Merriam. My mom had moved with me to Miami when I was 36 weeks pregnant. She had lived with me in hospital housing so Justin could continue working, transferred cities with me, and did not leave until we all moved out of that Ronald McDonald house together when Savannah came home at three and a half months. My dad had been the sole provider for their family so she could make this sacrifice for us- a sacrifice in itself. Once, when Justin had stayed with Savannah in the ICU and I had driven back to my hometown for my 6 week postpartum appointment, I tried to drop my mom off at home and to thank her for everything she’d done for us. I wanted her to know we honored her for her sacrifice, but we wanted her to have balance and rest too. I got all the way back to the hospital and met up with Justin, only for my mom to have my dad drive her back up and drop her off again that very next weekend. Justin ended up going home with my Dad and back to work that time. They drove up every weekend or every other weekend after that until we were discharged. But their support didn’t end there. My parents were the only people who knew how to operate Savannah’s feeding pump or to push any of her medications, meaning they were the only people who could watch her. They were the ones who offered us an occasional date night or who watched Savannah when I needed to work one day a week- just enough to step outside the four walls of my home and see that the world was still turning. ( I was losing all sense of what was real in the world and what was just the reality of our world.) They were the ones noticing Savannah’s needs and stepping in to take things off our plate where they could. The thing about being a Merriam is we are a little scrappy and we stay together. And now Miners know how to do the same.

Justin’s family came up also, and our church family soon followed. We sat around Savannah’s room, praying, telling stories, and trying to pretend we weren’t all wondering what came next or what we should say. Different teams of doctors came in and out, delivering reports that there was nothing more they could do. We made the decision for Savannah to be taken for a final scan to see how much activity her body was showing, and the Scripture Revelation 12:11 came to mind: “And they overcame him by the blood of the Lamb, and by the word of their testimony; and they loved not their lives unto the death.” I had always understood that verse to mean that others can overcome their situations by hearing our testimonies, or the testimonies of Christians who have gone before them in receiving the same kinds of healing or deliverance. Now I found myself wondering if, by sharing our own testimonies, there is some kind of spiritual release whereby we’re also set free. Justin and I- so protective of our girl- had still never shared the details of Savannah’s story. As Savannah was wheeled beyond the heavy lead-lined doors of the radiology room, Justin and I stood on the other side of them and released her testimony through Facebook for the first time ever. I didn’t care what anyone said or thought at this point. I was going to do whatever it took. 

As she returned from the radiology room and was taken back to the stark white and crowded one in that cardiac unit I’d come to despise, doctors started to approach us about turning off life support. They worried that she was in discomfort. I was devastated. I never wanted my daughter to know pain, but I didn’t want to have to make this decision. I asked for a moment and slipped out of the room. In a brick hallway beside a hospital staff elevator, I let my body slide down the wall and onto the floor. And from that very spot, I cried out to God… “I didn’t plan Savannah. You did. You gave me the best surprise I’ve ever received in giving me this daughter, and I’ve defended her from the very moment I knew of her. And now I don’t know how to stop. My husband and I are in disagreement about what to do here. I don’t want Savannah to be in pain, but I have made this decision to stand in faith for her and I don’t want to let my feet slide now. I believe You can still move here. You can still heal her. Please don’t make me make this decision.” I stood and made my way back to Savannah’s room, stepped inside the heavy sliding glass doors and stood at the foot of her bed for what could not have been more than a few minutes. I drew in a deep breath and looked up at Savannah’s doctor, still not sure what words were going to come out. But his tender, apologetic words beat my own…

 “I’m so sorry. She’s gone.”

 It feels strange to say that there would be relief in a moment like this, but I knew. God had been with us both. By receiving Savannah home at that moment, she and I would both know I’d never stopped fighting for her. From the moment I’d learned I was carrying her, to the moment God reached down to receive her from me, I had never- not once- doubted her or turned my back on her. I was devoted to her in every way I knew how to be. We belonged to one another. She had made me a mother and, in that, she had shown me the deep, unconditional love of the Father in a way I’d never known it.

That doesn’t mean I was ready to stop fighting. I had told the Lord I’d always do whatever I knew how to do for this child, and I wasn’t through yet. For three hours, we held Savannah in an armchair after a time of death was declared. As doctors and nurses worked around us to remove tubes and wires, to wrap her in blankets, to wash her hair and wipe down her body, we continued to speak the Word of God. Our prayers shifted from those of healing to resurrection and, for an hour, we watched as Savannah’s soft gray body washed pink with color again. A small patch of color started near her left shoulder and slowly spread across her chest and down her abdomen. I wondered if others could see what I thought I was watching and, as I called them over, they confirmed it too. A doctor and a nurse came and stood over my shoulder at one point, watching with us. And then, for the next two hours, nothing. I didn’t understand. I knew God was capable of sudden, miraculous healing. I’d seen it. It was part of my own story. And then six words came the same way the ones about wildflowers once had and, with them, complete surrender. 

“Savannah has a free will too.” 

I lifted my head and looked around the room at my family and Justin’s family gathered near. I sat, quietly deciding if I was going to say what I’d heard until,  at last, it came out. “Do you think it’s Savannah deciding to stay?”

I had spent all of Savannah’s life studying spiritual warfare and the believer’s authority- about how we are co-laborers with Christ, called to speak His Word and enforce His will upon the earth. His will for healing is quite clear and, while some contend that this includes being healed in Heaven, I have always clung to the Lord’s personal prayer which asserts He wants His will done “on earth as it is in Heaven.” I understood that salvation encompasses so much more than just eternal life in Heaven. While that would have been an amazing gift in itself, God also gives us the opportunity to walk in intimacy with Him here upon the Earth, just as in the days of Eden. And in the overflow of that intimacy, there is physical and emotional healing.

 I had asked God often how to have that depth of intimacy with Him and I had stumbled, many times, as I took things on in my own strength. Bible reading that began as a way to spend time with Him became a hunt to find answers that might lead to Savannah’s healing. Over and over again, God brought me back to John 6:28-29, “Then they asked him, “What must we do to do the works God requires?” Jesus answered, “The work of God is this: to believe in the one he has sent.” Everything in the Kingdom of God is accessed through faith alone. A faith that comes from focusing on His face only.  It’s why Matthew 6:33 says, “ But seek first his kingdom and his righteousness, and all these things will be given to you as well.” It’s also why Peter could only walk across the water for as long as He looked at Jesus and not the waves. Human emotion makes this hard to do when one of the ones you love most in the world is struggling. You want to keep looking at them… to see how they’re doing. Which is also why God says He has to come first. He has to be put higher than our spouses, our children, our parents, our dreams, our desires, our finances. He can only work through our faith, and unless we are putting Him first and focused solely on His face, we’re going to fall into letting our emotions drive our faith instead of the other way around. He asks us to put Him first so He can better fight for us and the very families and dreams we’re determined to defend. 

Thinking that I had not understood this balance enough and somehow been at fault for Savannah’s passing meant that I was probably not going to let this go… Unless I knew I was standing in my daughter’s own way. If all my fighting for her was actually fighting back against her.

My dad lifted his head from the corner of the room where he’d been sitting. “I heard the same thing from the Lord about 15 minutes ago, and I was scared to say anything.”

Confirmation. 

In that moment, I knew. It was time to stand down. Savannah was not coming back. She had chosen. And she had chosen well. It looks so much different than I ever would have chosen for my family, but it remains the proudest accomplishment of my life. I got my girl to the Father. She recognized Him on the day she saw Him face-to-face and she ran to Him. This is what it was always about.

 Brothers and sisters, we do not want you to be uninformed about those who sleep in death, so that you do not grieve like the rest of mankind, who have no hope. For we believe that Jesus died and rose again, and so we believe that God will bring with Jesus those who have fallen asleep in him.  According to the Lord’s word, we tell you that we who are still alive, who are left until the coming of the Lord, will certainly not precede those who have fallen asleep. For the Lord himself will come down from heaven, with a loud command, with the voice of the archangel and with the trumpet call of God, and the dead in Christ will rise first. After that, we who are still alive and are left will be caught up together with them in the clouds to meet the Lord in the air. And so we will be with the Lord forever. Therefore encourage one another with these words.

– 1 Thessalonians 4:13-18

That night we bathed Savannah, clothed her in a mustard yellow dress with wildflowers, and draped a pink quilt bearing scriptures across the top of her. And we gave Savannah back to the Lord the very way we once received her… covered with the Word, and with the understanding she was our wildflower. There is nothing I’ve ever done in my life harder than turning around and walking out of that hospital room, knowing I’d never lay eyes on my daughter earth-side again.

It’s been one year since that day that I’m now sitting down to tell Savannah’s story.

During the days and weeks that immediately followed, I got to see the beautiful truth of Psalm 34:18, which says “The Lord is near to the broken-hearted and saves those who are crushed in spirit.” I wasn’t able to do much. I sat on the couch mostly, trying to wrap my mind around what had happened or working on details for Savannah’s celebration of life service until it was all too overwhelming. Eventually, the doorbell would ring signifying our meal train drop off, and it would occur to me that another day had gone by and still nobody had come through the front door with Savannah in their arms, the way it felt like my heart was waiting for someone to. I couldn’t get myself out of bed, couldn’t eat, couldn’t bring myself to turn on the TV much less pick up my Bible. And yet I was hearing the Holy Spirit’s whispers in a way I had never. I wasn’t even pursuing Him, but I could feel how near He was. He wasn’t going to make me come my half of the way to meet Him. Not right now.  He came all the way, and He brought healing. Revelations poured forth. 

The first was a vision of Savannah running to and being picked up by Jesus. Over the back of His shoulder, she beamed as she waved goodbye. A sweet friend immediately painted the scene for us. I have no doubt her gifts are empowered by the Lord because the painting was delivered an entire week before Savannah’s service, and the service was only 3 weeks after losing her. I don’t know how else someone paints a picture realistic enough to be a photograph in only a week’s time. I put it up beside my bed so that it was the first thing I laid eyes on every morning. A reminder that I do not grieve as one without hope.

After that came a new understanding of an old Scripture. In Hebrews 11, Paul writes what would eventually come to be known as “The Hall of Faith.” It outlines so many of the Bible heroes we read about through Scripture and the way they stepped into faith in their respective stories. In the opening verses of the very next chapter, it is written, “Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us,  fixing our eyes on Jesus, the pioneer and perfecter of faith.” 

That cloud of witnesses references the very Bible heroes the entire previous chapter just spent detailing. I could just feel the Holy Spirit’s warm smile as He nudged my heart with the next thought. “If they can see me to cheer me on, why couldn’t Savannah?” I don’t claim to know how Heaven works. And I can’t say that I’d want to spend much time watching things playing out here if I were Savannah. Who would, when all of Heaven waits? But this new thought that she might check in from time to time gave me a new question. How could  I show her that I still believed everything I ever taught her? I wouldn’t let my faith run out and risk falling short of Heaven’s gates. No, I would wait expectantly for our redemption and, one day, our reunion. I would choose to believe that God would make this good when I couldn’t see any glimpse of it before me. 

In these verses, Paul describes faith as a multi-generational baton race of sorts, each of us passing off the extent of our legacy to the next generation so they might run faster and further than those before. The significance of building an enduring legacy had never been something I’d overlooked. At 20 weeks pregnant, shortly after Savannah’s diagnosis, I’d delivered a sermon entitled “Legacy” at our young adult ministry. But now, the Lord was reminding me that  His kingdom had always been a backwards, upside down one where the first were last, the last were first, and things were just done differently. I had spent all of Savannah’s life believing she was my legacy, but suddenly I understood that I was supposed to become hers. I read back over Hebrews 11 and 12 hoping for confirmation and, sure enough, noticed something I hadn’t before. Hebrews 11, verses 39 and 40, just before the mention of the cloud of witnesses.  

“These were all commended for their faith, yet none of them received what had been promised, since God had planned something better for us so that only together with us would they be made perfect.”

It meant those of us who bear the seal of the Holy Spirit. Those who now carry the words of Christ. But could it be that it was for Savannah and I too? 

One day every one of our earthly works will be burned with fire. Only the works produced with the purest of intentions, those in faith, will remain. We’ll receive a Heavenly reward for them. It’s why God tells us not to bury our talents. It’s why He tells us to share our testimony. But what about Savannah? She hadn’t gotten to tell her story. Who would carry it now? Who would pass her baton? I had given my daughter everything I knew how to this side of Heaven, but now it seemed I could be a part of her Heavenly reward. Simply by sharing her story and allowing God to receive His glory. And so here I am. 

There’s been many more revelations since then. And still, so much I struggle to understand too. In Exodus 23:26 when God promises the Hebrew people (who we have since been grafted into through Christ) that none will be barren and He will fulfill the number of their days, does that mean that there’s a different number of days written for us all? That seems right, but then what about Psalm 91:16 where God promises to satisfy the one who dwells in the shadow of the Almighty with long life and to show him His salvation? Does this speak only to eternal life, or does a long life mean something different to each of us? While 3 years doesn’t seem long enough to me, is that considered a long life for a child who the world said would not make it to delivery? I don’t pretend to have answers to these questions. I don’t pretend to know all the different ways God works anymore. Oh, but the things I do know now- the things He used Savannah to teach me- those can never be taken from me.

“That which was from the beginning, which we have heard, which we have seen with our eyes, which we have seen with our eyes, which we have looked at and our hands have touched- this we proclaim concerning the Word of life.” – 1 John 1:1

• The way God uses our prayers in ways we don’t expect to protect us in ways we don’t yet know we need.
• How to live with my arms wide open, gathering people up as I go.
• Godly boundaries and the path to forgiveness.
• What it means to soak up the simple joys. 
• The power of His presence and learning to be still in it so we hear Him when He speaks to us.
• The depth of His grace when we get it wrong.
• The way He goes before us, sending people and preparing places.
• Learning to be vulnerable.
• The extent of His provision. 
• The way there is nothing we could ever do to make our Father love us more. Nothing we could ever do to make Him love us any less. His love is relentless and, if the words I often use to describe Savannah originated in His heart for us, you better believe “I’m obsessed with her!” is common language in Heaven. 
• The freedom in letting go of fear once and for all, and just letting yourself be loved. 
• And the fierce way the Father fights for His kids. We will NEVER see His back.

I sat in Greenville, South Carolina on Savannah’s first Heavenly birthday, thinking over these things I’d learned through her life and drafting a birthday letter. A tradition I didn’t quite know how to let go of, and so I didn’t. I wrote my letter sitting along a stone wall separating the coffee shop whose WIFI I was stealing from the beauty of Falls Park- a gorgeous, green, lush space where lovers sat on swing benches, daring kids climbed a rocky waterfall,  happy dogs chased ducks, and a breath-taking suspension bridge hung right through the middle of it all so even passerby’s could feel a part. Sitting there, in the peacefulness of that park, I felt my mind drift back to that declaration over Savannah’s life I’d received when she was just 16 weeks old…

“She’s your wildflower.”

And in the same way that immediate download once came, another did now too. 

Once a wildflower has finished producing flowers and scattering its seeds far and wide, its work is done and it will die out. It doesn’t make the flower any less beautiful, any less significant. It’s a sacrifice. So that others can reproduce behind it. The vibrant pop of beauty and color that was known here will soon be seen spreading in all directions. Because that wildflower lived.

Tears streamed down my face as I started to ask, “Does this mean…”

The reply came swiftly, cutting me off.

“Yes. She is a SoJourner.

And so are you.”