Tuesday, December 19, 2017

if this wheelchair could talk


Today, Faith Ana would have turned 10...

On this special and incredibly bittersweet day, I'm sharing a bit more about her little life, a few raw and still-tender thoughts about her death, and the many merciful and faithful ways the Lord has used her story to transform mine...








In the beginning, God created everything: the heavens above and the earth below. Here's what happened: At first the earth lacked shape and was totally empty, and a dark fog draped over the deep while God's spirit-wind hovered over the surface of the empty waters. 
Then there was the voice of God. 

Genesis 1:1-2



Totally empty. Covered in darkness. Walking around in a fog. 

I know this well. Maybe you do too? 

An empty chair at the dinner table or an empty room in your house after a loved one has passed away or moved off.

An empty womb after years of waiting and praying and hoping.

An empty sac during an ultrasound, where there was supposed to be a growing baby and now nothing. 

An empty bank account. Medical bills stacked up and not enough income coming in to cover them. 

An empty calendar once filled with opportunities but now blank due to a disability that makes you home bound.

An empty relationship. A struggling marriage or a shattered friendship.

An empty bottle of pills. An empty bottle, or two, or ten, of wine or whiskey or whatever your poison is. {There's so many addictions -some more subtle than these- that we can fall victim to when we try to fill the cracks and crannies of our heart with something other than Jesus.}

An empty stomach. Similar to other addictions, we often try to fill our empty places with food or we do the opposite, ignoring our emptiness and ending up with starved bodies and starved hearts.} 

An empty nest. Children grown and gone. Or maybe not grown yet, just gone.

Not all, but so many of these have been part of my story. Maybe yours too?

I have known empty well.

On this side of eternity, suffering, grief, loss, sickness, and pain are inevitable, ushering in empty seasons that will most certainly leave their mark on our lives. These are the seasons where we find ourselves questioning God's heart and perhaps wrestling with everything we once knew and believed to be true. These are the seasons where we move through the day in a haze, struggling to not give into the darkness that threatens to destroy us.

Yet do not despair:
God speaks to us in these empty places. 


Today, I'm looking at an empty wheelchair. A wheelchair that, just a few short months ago, was not empty. A wheelchair that belonged to a little girl born halfway around the world. A little girl born with a severe neural tube defect, a damaging form of spina bifida that left her paralyzed from her waist down. A little girl abandoned as a tiny baby because of this very condition, leaving her orphaned and alone. A little girl that spent six years in a Bulgarian orphanage before the Lord chose her to become our daughter.

It's been quite a story.

Faith Ana joined our family on June 5th, 2014, and she was welcomed home by three big brothers, two little brothers, one little sister, and one big sister, adopted from a different Bulgarian orphanage a year and a half earlier. The thing I remember most about the day she came home was this overwhelming feeling of fullness in my heart. I had spent two weeks alone in Bulgaria completing all of the necessary paperwork to finalize her adoption. Coming home was magical - seeing all of my babies again, wrapping them tight in my arms, witnessing Faith Ana welcomed by all of her new brothers and sisters and loved on for the first time in her entire life by a daddy. It was an incredible day, one that I will always remember. A day full of such joy, relief, happiness, and such tremendous hope. 


Hope is a powerful thing, and this day, there was such great hope in my heart for this new daughter of ours and for the ways that she would be able to integrate into our family and be a blessing to many. This was quite evident to everyone who met her. Though she suffered in many ways and had massive physical disabilities that limited her, Faith Ana made up for it with a sweet and spunky spirit, an absolute love to talk, and a friendly, outgoing disposition that made her loved by many. 

This homecoming was a night and day difference from the homecoming of our other little girl, S, who struggled and continued to struggle for many years with severe reactive attachment disorder along with mental, emotional, and behavioral challenges. Yet, this homecoming, no matter how magical or picture perfect it may have appeared in the snapshots, was simply a moment. A brief and fleeting moment.


If her little, bright-pink wheelchair could talk, it would whisper of hard days and long nights, disappointed hopes and struggles not anticipated. It would speak of pain and paralysis, of strength and suffering. It would tell of moments of victories and many more of defeats. If this wheelchair could talk, it would chant, “one step forward, three steps back.” This wheelchair watched my heart break as I watched hers struggle to heal. Oh, if this wheelchair could talk...It would share of desperate prayers and desperate days and it would say, “adoption is hard and holy, yes, and adoption is definitely not for the faint of heart.” If this wheelchair had words, perhaps for the both of us, they were just simply this: “Take heart, dear child! Just Don’t Lose Heart.” 

Fast forward, three years later. Three years to the very day of that memorable homecoming.

Faith Ana had been sick all weekend. A mysterious sickness. Diagnosed only as a mild urinary tract infection, this was not the first time this type of infection had wreaked havoc on her body and left us feeling helpless {and hopeless}. Just a month earlier, she had been rushed to our local emergency room and then later airlifted two hours away to a different hospital, only to be sent home a day later perfectly normal and seemingly healthy with very few answers to our very many questions. 

Unknowns had become a very real part of our lives. These adopted daughters of ours with their unknown beginnings and their unknown medical and mental challenges, left me feeling entirely inadequate in my attempt to care for and love them as my own. No amount of adoption education could have prepared me for situations like these, and the reality was that this particular situation was not an isolated event. They had, in fact, become very much a norm for our family. Although Faith Ana had learned a minimal amount of English and could speak a few words, even after being home for three years, her ability to communicate was extremely limited, making times like these especially difficult.

This was, for me, a season of feeling completely hopeless and at a loss for how to help this precious child. I knew empty well. I had been running on fumes for months {years really}. Since her homecoming three years before, I had birthed two more babies, suffered a miscarriage, and dealt with a debilitating iron-deficiency anemia that left me at times feeling as crippled as this precious daughter of mine. I had struggled through difficult pregnancies and post-partum depression, continued to battle an exercise and eating disorder, and finally realized and acknowledged that I was experiencing post traumatic stress disorder (from our first daughter's adoption journey). These along with a host of unthinkable and unimaginable difficulties with these two adoptions {things we never could have foreseen or predicted} had all left their mark on my body, my mind, and my spirit. I knew empty well, and these had been some of the darkest days I had ever walked through.


{These events with Faith Ana were also happening simultaneously while we continued to deal with and seek support after a very lengthy and difficult psychotic break-down that S had experienced earlier that year. We had already begun the heart wrenching process with our adoption agency to find S a new home, one that could better meet her growing needs. During this season, in the midst of all that was going on with these two daughters, we were raising our eight biological kids, our oldest only 11 and our youngest only six months old. I had just found out that I was pregnant with our ninth, although I went on to miscarry this baby just a few weeks later. It was a full season, in a sense. It was also an empty one.}

On the morning of June 5th, I was so exhausted, I could hardly pull myself out of bed. I knew I needed to get up and check on Faith Ana, but the thought of another day was almost more than I could bear. The stench coming down the hallway from her little room was an indicator of what I would be walking into. This had become a regular part of my day for both of my girls, and most days for the past year, I had become accustomed to spending the majority of the morning focused on clean-up efforts and helping to get them both ready for the day. This involved diapers, catheters, cleaning them, dressing them, dispensing medications, and often preparing special meals and then needing to feed them.

That particular morning, I passed by their room, walking in a fog, to the kitchen. First, coffee, I thought, then I will check on her. Maybe today will be better? Maybe the medicine is helping? Maybe? 

Hope is a tenacious thing. It pushes through the darkness, like a daffodil bulb pushing through the hard, cold winter ground. So many times, I had prayed, begged even, that the Lord would flood my heart with hope and that I would not lose heart. But this journey had worn me thin. Literally and figuratively. And hope, in this season, felt like such a very fragile thing.


I remember so specifically that particular morning as I drank my coffee and read my Bible, all the while feeling this sense of dread rising up inside of me. I remember my heart racing, not because of the morning caffeine, but because, yet again, I was in the grips of a full, all-out panic attack, and I had no idea why. I just had a sense, an instinct, and I somehow knew that I was about to be walking into something hard. I just had no idea how hard.

Let me back up a bit and give a little more of the back-story:

Our two big girls had shared a room for most of the time they were home with us, until recently when S had experienced her breakdown, involving some violent and unpredictable behaviors. It was obviously unsettling {and unsafe} for Faith Ana, so out of necessity, we separated the girls. S slept in their small bedroom behind a closed door, while Faith Ana slept on a pallet in the connecting room, which was a large bathroom. It wasn't ideal, but it was sufficient and actually pretty practical. The tile flooring and close proximity to the large bathtub made the cleanups that I routinely faced easier. The other kids were on the other side of the house, shielded in a sense from the sights, smells, and sounds that were very much a part of daily life with our two special needs daughters. Faith Ana had learned to be {mostly} quiet in her room and would wait patiently for me to get her up in the morning since she was unable to do this on her own.

During the few days that she had been sick, Faith Ana had no interest in getting out of her bed and doing any of her usual activities. This puzzle and cartoon-loving girl was just not her usual self. She was lethargic and had no appetite, and I was concerned, even though we had just seen the pediatrician the day before, ensuring me that these were just symptoms from a routine UTI. The day before she died was especially difficult. I will leave the specific details out, but what I remember most vividly was the mounting frustration for both of us that day as she struggled to keep even the smallest amounts of pureed food and liquid down. By the end of the day, mushed-up food was everywhere. It ran down her face and covered her hair and her clothes and dripped all over that bright pink wheelchair. When I put her to bed that night, I was too exhausted to even find a pair of clean pajamas for her to wear. The stack of dirty clothes and soiled sheets and messy towels were proof of just how overwhelming this all had been. I remember giving Faith Ana her medicine, clinging to the hope that another dose of her antibiotics just might help, praying she would feel better in the morning. That night I struggled to say the words that I said every other night. Simple words, yet words I often wondered if she could comprehend.

I love you, Faith Ana.

Did she know that I was fighting so hard for her because of how much I loved her? Or did she drift off to sleep that night just thinking I was fighting against her? I wish I knew. But I do know {though I have often had to remind myself} that I loved this girl so very deeply. It was a hard, tough love. A fierce love. A fighting-for-her-life and a fighting-for-her-heart kind of love. A hard learned love. A supernatural love.


I love you. 

Sometimes those words felt so forced with this child and with her sister. This night they stuck in my throat, and I could hardly utter them. They turned out to be the very last words that I said to her. 

I had nightmares during that night, and I woke up several times, including once to feed the baby his bottle, but never once did I hear a peep or a cry from her room, which was right down the hall from mine.

Maybe I should have checked on her during the night? Later, I would question myself and second guess every single detail of that fateful night. Was that Faith Ana I heard making a sound in the early morning hours or was it just the baby stirring across the room? Did I hear her coughing during the wee hours of the night or was that from my bad dream? I've relived these moments many, many times, rehashing the hours of that night in my mind.

If only that wheelchair could talk...

That morning, that June 5th morning, I finished my coffee and tried to slow my breathing down so that my racing heart would begin to settle. Lord, give me the grace I need, pour out Your mercy, I whispered. I prayed these words almost every morning before opening the door and going into her room. They were words I knew I always needed for the challenges and the mess that I would face. They were words I had no idea just how much I would need for this day. 

Lord, give me the grace I need. Pour out Your mercy.

The scene before me was one so traumatic that I wish I could erase it from my mind forever. I will leave the details out, but it was horrible, and I knew immediately that she was dead. I didn't even have to touch her cold body or feel for a pulse to know she was gone. 

She was gone. Under my watch. Under my care. It was an agonizing moment.

Within minutes, our wonderful neighbors and friends took the other kids out of our house. And within minutes, our house filled with emergency workers, policemen, detectives, and more people than I can remember. The fire chief came, and the coroner came. I was so thankful our sweet pediatrician came to reassure me and pray for me. She kept telling me over and over again that this was not my fault, that Faith Ana had been a very sick little girl, and that I had done everything that I could and should have done. I didn't believe her. After all, who dies from a UTI? I needed to hear these words many times over the coming weeks and months as I was tormented mercilessly with accusations from the Enemy that this was my doing and all my fault. While I knew that all the people in our home that morning were just doing their job, it was a nightmare. As they asked question after question, took pictures and jotted down notes, and walked through and checked out every single room in our home, my feelings of guilt and blame and failure only intensified.

Later after they finished their investigation, they rolled her body away on a stretcher and sent it for an autopsy. An autopsy that would take months to complete, leaving questions unanswered and doubts multiplying, ushering in a season of emptiness, of profound darkness, and of wrestling unlike anything I had ever experienced before.

Ninety days later, we received the official autopsy findings. I had hoped that it would give me some sort of closure, but it did little to assuage my doubts or quiet my wrestling mind. Natural causes. That was it. She died of natural causes. It was as much a mystery now as it had ever been. Maybe she had a seizure during the night. Maybe an electrolyte imbalance that simply caused her heart to stop beating. Maybe she aspirated on her vomit and choked in her sleep. Maybe she just stopped breathing. We don't know why it happened and never will. The answers I hoped for and the resolution I wanted never came.

That day left behind a gaping hole in our family.

It left behind a huge and empty gap in the minutes and hours that made up my day, a day once spent caring for this special girl and her mountain of needs.

It left behind an enormously empty place in my heart where I wrestled with the purpose of Faith Ana's little life, the brief time she spent with our family {three years to the very day}, the mystery of why her life was woven together with mine, and especially the mystery of why it ended so soon and so suddenly. I wrestled with the suffering she experienced as well as the suffering we shared with her during her time with our family. I wrestled most intensely with my role in her life, my failures, and my wishing that I had been more for her, criticizing and beating myself up for not being better. I wrestled with thinking that she would have been better off and still alive if we had left her in that Bulgarian orphanage or if another family had adopted her rather than ours. Ultimately, I know that I was wrestling and questioning both the sovereignty and the mercy of God.


And I know I am not alone in this place of wrestling. These are the questions of the ages. Why does a good God let bad things happen? Why did He let her die? 

Faith Ana was dead, and my own faith was under attack.

{In this place of wrestling and loss and emptiness, the Enemy saw my vulnerability and was cruel beyond words. He whispered lies and shouted accusations. He attacked in ways I had never before experienced.}

For me, it was hard and heavy and deep. It still is. It left behind questions that didn't have easy answers. It left behind a story with an ending that I didn't know what to do with. I wanted to see good and purpose and meaning, but I struggled to find it.

It also left behind a bright pink empty wheelchair. Staring at me. Reminding me of the last time I saw Faith Ana in it, and, for the longest time, this empty wheelchair only screamed of my failures as her momma. Shame on me for not taking better care of her. Shame on me for not being able to keep her alive. If that wheelchair could talk, for the longest time, that would be all it would say: Shame. Shame on you. Shame. On. You.

Slowly, mercifully, our days following her death began to feel somewhat normal again. The funeral was a sweet celebration of her life, and we were blessed in a big way by the tremendous outpouring of love and support we received from family and friends. Even though I was still very much in the throws of my wrestling, it wasn’t constant, but rather coming in waves. Days would pass, and I would be fine. I would find myself happy and joyful for the ways the Lord had worked in our family. It was amazing and miraculous to me how resilient all the children had been. They were thriving, and we were all doing well. 

{Even S was doing well as the Lord had written the most amazing story for her little life, one that included a family that had loved her, prayed for her, and wanted her as their very own daughter long before we ever saw the first picture of her in that Bulgarian orphanage. She was now with that family, her new and forever family, and she was doing so well.} 

But just as there were stretches of joy and respite {relief even}, there would be triggers. A picture. A conversation. A medical bill with her name on it. The sight of this wheelchair. Sometimes, it was simply just in the quiet minutes, when there was a lull in the laughter, the loudness, and the lively fullness that made up our days. It was in these moments that the emptiness, the grief, the shame, and the disappointment felt the most profound, the most real, and the most raw. And it was in these moments, when the tears fell unchecked down my face and the questions surface, barefaced and unabashed, that the Lord met me and spoke so kindly and gently to my hurting heart. 

Of course, He was there with me all along. Every minute of every day. Every step of this journey. Every page of this story. In a way, I feel kind of like it was in the very beginning as told in the book of Genesis: His Spirit was hovering right over the surface. I felt His presence. I felt His comfort. I felt His peace in so many tangible ways, and these were sweet mercies during the weeks and months after Faith Ana died. His Spirit was indeed hovering over our home and over my heart. But in those rare and raw moments when my heart was truly open, it was then that He met me in the cracks and crannies, the deepest of places and the emptiest of places. When I truly let myself grieve the loss of this life, the loss of hope, with all of my disappointments and failings mixed in, it was then that I knew the Lord was more than just hovering nearby...

At first the earth lacked shape and was totally empty, and a dark fog draped over the deep while God's spirit-wind hovered over the surface of the empty waters. 
Then there was the voice of God. 

It was then, that I heard most clearly the voice of God. His voice speaking to me. His presence comforting me. His Spirit with me.

While suffering and pain and grief always invite the question WHY, I know the question the Lord wanted me to ask {and wants me to ask even now} is WHO:

Lord, teach me who you are in this place. Teach me more about You. Show me Your heart. I don't understand why this has happened, but I need to know, I want to know, I have to know, who You are. Remind me that You are sovereign and that You are good. Remind me that I can trust You. Help me to trust You.

In this most painful and desperate place, He began meeting me, faithfully, and speaking into my weary, wrestling heart. 

It is a process. Grief is a process. It takes time. It is taking time, and this is ok.


Today, I'm taking Faith Ana's wheelchair to a place where I can donate it, and I know it's time. It's the right time. It's been over six months since she died, and it's time for this bright pink wheelchair to move on.

I'm praying and trusting that this wheelchair will be a special gift to another little girl. Since Faith Ana died, I've had two other individuals and organizations express interest in her wheelchair, but both times the arrangements fell through. It was disheartening and frustrating because I desperately wanted something good to come out of this story, even something as small as this bright pink wheelchair being a blessing to someone else. In hindsight, the Lord's hand was clearly behind all of this. Part of the good that needed to come out of this had nothing to do with another little girl with a broken body like Faith Ana. I know, now, part of the beautiful good the Lord had most perfectly purposed had everything to do with a not so little girl, and one not with a broken body, but one instead with a broken heart. A very broken heart. My broken heart. 

I'm so thankful for the ways the Lord has used this empty wheelchair to speak into my heart. Because, now, when I look at that bright pink wheelchair, I don't see my failure. I see His mercy poured out on me. A big, wide, and far-reaching mercy. 

One of the greatest blessings of my life, I know, was the privilege of being this little one's momma. My inadequacy, my insufficiency, and, yes, my failures and shortcomings in parenting her and loving her, the Lord used in mighty ways to drive me straight to His heart. And I know, now, what I just knew in theory before, that His mercy truly covers me. Every mistake, every impatient action, every sharp word, every single time that I failed to act in the merciful way that I so longed to, it's all covered. In all the cracks, crevices, and crannies. In all the empty places. Every hidden, secret, and shameful thing. It’s covered. It's forgiven. It's washed clean. Being Faith Ana’s momma was a mercy. Hard. Severe, even, at times. But mercy. A big, big mercy.

Just as her life and time being my daughter revealed His great mercy, Faith Ana's suffering, her death, and all the questioning and wrestling that happened in the aftermath drove me deeper into His arms, making me desperate to know His heart for her, for myself, and for a broken and hurting world. And this, too, was mercy. A most severe mercy. Losing a child is unimaginably hard yet, for me, it was a mercy. It sounds impossible to say those words, but I know it is true. A mysterious mercy, but, yes, even her death was a mercy.

That pink wheelchair is no longer whispering. Today, it’s shouting. One word. One beautiful, beautiful word. MERCY! In so many ways and in such a loud voice, it’s message is clear, and it's one I can't forget or deny or stop proclaiming: Mercy! The Lord has shown such tremendous mercy on me. 

This has often been something that people have said to me to encourage and comfort me. I’ve often doubted it, and in my spirit, I’ve often denied it. But it is true, I know now, and I do believe that Faith Ana was shown great mercy when the Lord chose her to be part of our family. Though we parented her very imperfectly, we loved this girl, and, most importantly, she heard the name of Jesus here in our home. She learned how to say a simple prayer. She learned how to sing "Jesus Loves Me." I don't know that over the course of her entire life, if spent in Bulgaria, if she would have ever heard the name of Jesus. But in our home she heard that name spoken and sung, many times, and this was mercy for her. When she was ushered into the presence of Jesus on June 5th, 2017, she knew, if only in a tiny way, what it was to be a chosen, sought after, dearly loved child of God. Now, she knows it in a big and deep and wide way. She knows it greater and truer than any of us still on this side of eternity.


And, yes, it's true also that the Lord was indeed merciful to Faith Ana even in her death. I believe with all my heart that she is free from suffering and pain and hardship and that even now, she's dancing and jumping in heaven, no longer bound by that bright pink empty wheelchair. And this makes me smile, and it makes my hope grow strong. 

Mercies are magnified in light of Eternity.

This wheelchair was a gift to Faith Ana, and she loved the freedom it gave her. She enjoyed racing across our back patio, showing off just how fast she could fly. She was so proud of how she had mastered getting up our wheelchair ramp without any help. She learned to do simple chores and could carry a trash bag to the trash can all while navigating that bring pink wheelchair. She learned to be creative and resourceful, determined and persistent. This wheelchair enriched her life, and I’m so glad for the many ways it made her little life just that much fuller.

This wheelchair has been a gift to me. It's a gift I didn't expect or ask for. It's certainly a gift that didn't come wrapped up in a neat and tidy package with the pretty paper and ribbon like I had hoped or dreamed of. But here it is, right in front of me. Though it’s empty now, it’s still offering breath-taking fullness and beautiful freedom just as it did for Faith Ana. Freedom from shame and guilt. Freedom from failures and past mistakes. Fullness that comes from His joy and His peace. Fullness of His resurrection life, living in me, and the fullness of hope that celebrates an eternity when every tear is wiped away, every mystery is made clear, and every pair of lame feet will leap and dance before a gracious, good, and merciful Father. A Father that looks me in the eyes and doesn’t wag His finger or shake His head in disgust, but rather sees me, covered in the righteousness of Jesus, and says, “Well done, my good and faithful servant. Well done. You loved this little one so very well. Well done, my love.” He doesn’t keep a record of my wrongs. A list of my mistakes and failures and flailing attempts to parent this precious girl. The times I lost my patience with Faith Ana. The times I lost my temper. The times I spoke too harshly or the times I failed to speak at all. This and more, every bit of it, is covered by His mercy, and, oh, how I bless His name for the ways He has used this pink wheelchair to speak these truths deep into the emptiest places of my heart.

In a sense, this has been a new beginning for me. A moving forward and a moving on. And the Lord is, most assuredly, moving over my emptiness and speaking straight into it. He's speaking words of life and purpose, truth and love. Beauty from ashes and tremendous mercy poured out into my heart. 

And I know He wants to do the same for you. 

Dear heart, wrestling in your own darkness, feeling empty and alone. He wants to meet you and He wants to speak into your empty places just as He is so faithfully doing in mine. Will you open your heart and hear what He has to say?


It is through the tender austerity of our troubles that the Son of Man comes knocking. In every event He seeks an entrance to my heart, yes, even in my most helpless, futile, fruitless moment. The very cracks and empty crannies of my life, my perplexities and hurts and botched-up jobs, He wants to fill with Himself, His joy, His life...

Elisabeth Elliot

XOXO,
Melanie

1 comment:

  1. Made with cushioned seats, back rests and arm rests and often a head rest too, you will be happy to spend longer in your wheelchair than a basic version without padding. motorized wheel chair

    ReplyDelete