Maybe

Dear Ellie,

Today you would have been 18-months old. Maybe you would have been walking, maybe not. Maybe you would have words to share with us, letting us know what was happening in your little mind. Maybe not.  Maybe you would have tantrums, showing the world just how much not getting your way displeased you! Or maybe you would have been the girl who would have gone off in a corner to pout and cry silently. Maybe your daddy would scoop you up and throw you on the couch as you giggled and squealed. Maybe your Mama would have your toes painted cheerful colors. Maybe you would be able to say my name. Maybe you would babble to me on the phone. Maybe your Mama would be sending me stories of the silly things you did each day. Maybe you would have bright pink braces on your legs or physical therapy five days a week. Maybe I would talk to your Mama about the things I learned in my experiences with special needs that could help you. Maybe we would finally be getting an idea of what your future would look like. But despite all the maybes…you are not doing any of those things. Your earthly body is still in the ground, where we placed it a little over a year ago. Your things are still placed neatly in a box, showing no signs of being used. The world has moved on…even I have. I cannot remember the last time I became teary at the thought your absence…until today. I feel guilty about that. My escape has been numbness…until today. Today, I held a little girl and felt what would have been your weight in my arms. Today, I sang of God’s goodness in church and remembered how it was His goodness that held me when I could not stand because you were gone. You are still gone. Today, I let my mind wander to the day you were born, the day you died, and the day I’ll hold you once more. I let my heart ache as I envisioned the task of explaining who you are to my own future babies. Today, I let myself remember that my Sister and Brother-in-law are living life on earth without you…without your laughs, your needs, and your future. Their arms are empty…still. They are still thinking of you daily, they are still facing a cruel world who forces them to move on. Today, I hurt. I’m empty. I’m angry. I’m lonely. Just for today, I refuse to be ok and I refuse to move on. I refuse to pretend that your life and death are far from me. Today, I want to sit and be quiet. I want to rest in the arms of Jesus…where you are. Today, I’m choosing to hold you and be held. And maybe, just for today, that’s ok.

Love you always,

Aunt Mimi

The Littlest Butterfly

I see a butterfly before me. She is small and delicate. The curves of her wings are gentle and smooth, as if carved by the gentlest hands of deepest love. The design upon them is bold yet, easily overlooked. Her inner treasure may not be noticed at first glance, but each moment spent gazing upon her unearths depths of the purest beauty. The movement of her wings is slow and graceful, as if each gentle pump is focused and life-giving. Like breath they move in perfect synchrony, a reminder that life must be lived one moment at a time. She perches upon her place on this earth, her existence silent, yet deafening to all blessed enough to receive the miracle of beholding her. Around her, danger swirls and those who love her long to protect her. Her delicate body is no match for the darkness of a fallen world. Yet still she rests upon her flower, fighting the wind and rain, radiating beauty and moving through each day in the rhythm of life. As time goes on, her body becomes worn; her gentle wings are frazzled and worn. Her tiny antenna are bent up and kinked, yet her beauty increases the longer she fights. And then one day, her wings move more slowly and come to a stop. For an instant, the world holds tight its breath, praying that this precious butterfly will remain near. But suddenly, with such little warning, she takes off into flight, flitting through the darkened sky. I cry out and reach for her, grabbing to bring her close. But I am not big enough, nor strong enough to combat that which is taking place. Higher she goes until almost out of sight. I sink to my knees, defeat weighing heavy. I realize I've lost her and all that is beauty. I raise my head slowly, begging for one final glimpse. Instead of the darkness I believe I will see, I see something much greater than all I hoped could be. My breath stops suddenly at the sight I behold. A presence of love, of grace precious as gold, is holding this butterfly and carrying her upward. I watch and I watch until she's finally out of sight. I let the tears come, I let my heart break. But as I gaze up to the place where she finally flew, my heart finds its hope and joy anew. The same hands that hold this tiniest butterfly, are wrapped around me, promising comfort and love. She's out of my reach, but so close to my heart. For my Father, Beloved, True Love, and King, is holding us both and His is the glory.

Happy 1st birthday, sweet Ellianna. One year ago today I saw you for the first time in your very first photo. No tube or wire could mask your beauty, for in your precious face I saw the signature of the Artist with an immaculate style. One year later, I look back on a journey with many miles yet to travel--a journey of defeat and triumph, sorrow and joy. I miss you so very much. Each and every day I walk not in a shadow of your death, but in the light of your life and all it is teaching me. I thank God for you and I love you so very much. See you soon.

Love, Aunt Mimi

The Art of Grieving

Grief is a curious thing. It can come both as a dangerous hurricane and a silent whisper. It can come suddenly, like a slap in the face, or it can come slowly, like a fist tightening around one's heart over a long period of time until the tightness finally steals away so much breath that its victim is forced to face reality. Grief can be lonely and dark, or sweet and laced with comfort. Grief can kill...but it also can bring life. The last 6 months have been a journey of encountering so many aspects of grief. I have smiled at it's sweetness when I trace my niece's precious face in a picture. But I have also cried out in pain, despising the bitter taste grief has left in my heart. I have delighted in speaking of Ellie and sharing her beauty with my friends. I have also spent hours in my room, feeling alone and overcome with the burden I silently bear. I have praised God for how He is using Ellie in my life, and I have told him I cannot understand why she is no longer in our arms. I have rejoiced in the hope and peace found in suffering in Christ, and I have wept because sorrow overwhelms me and despite so much light, I am left staring into the darkness of loss. I show pictures, I tell stories, I share the lessons learned from the life and death of this precious little girl. And yet I know that I will never be able to paint a picture of just how much Ellianna has shaped me and will continue to shape me. I can show a picture of her tiny face, but I cannot explain how I can still feel what it felt like when my lips brushed that tiny cheek and the smell of her sweet hair and plastic oxygen tubing made a smile dance on my lips. I can show a photo of her curled up on my chest, but I cannot describe the emptiness I feel when I remember that I will never feel the weight of her tiny body again. I can give updates on how my sister and her family are doing, but I cannot convey the pain of watching my sister and her husband live the loss of a child, or the heartbreak of watching my nieces and nephew try to make sense of such pain. I ask God why...but at the same time, I tell Him I don't need to know. My heart aches, but yet balloons with joy because of the chance I have to be the aunt of an incredible little life who has changed me and shaped me in a way that undeniably proclaims the hand of God. I don't know how to grieve. If there is an art to it, I certainly have not mastered it. Most days, I feel like such a sloppy griever. One day I may be joyfully telling one of Ellie's silly stories, and the next I may be alone in my room, sobbing over her absence. But as I grieve day to day, in whatever way it happens to be, I am discovering true beauty. God isn't asking me to be a "pretty griever." He isn't asking me to feel guilty for my grief or pretend it isn't there. He does not require me to grieve perfectly. He is asking me to trust His heart. He is inviting me to rest in His arms, turn my ear to His promises, believe in His goodness, and rejoice in the beauty He is raising from such choking ashes. He is asking that when I do fail, I ask for and accept his forgiveness. And more than ever, He is holding me. He is reminding me that He holds my heart and collects every tear. He is being my perfect Beloved, as His quiet love beckons me back to His safety every time my unpredictable emotions lash out. When I weep over the empty arms of my family, He reminds me that His arms are full as he cradles each of His children, including our precious Ellianna Grace, as we wait to hold her once more.

Arms of Comfort

Life is hard. I don't know how people who have no hope in Christ live it. The "small things" are hard enough, but when tragedy strikes, I truly don't know how those who don't know our King continue to function. So many people have experienced pain far, far worse than my own and have nothing to fall back on, no arms to rest in, no hope to behold. We who belong to the King have so much comfort, we have life--abundant life. But still, we hurt. Our hurt is no less than those around us--but it is bound in hope. So often, I have the blessing of being able to be strong--not because I myself am strong, but because I have a steady flow of strength flowing through me from the Holy Spirit. Plus, I have the incredible opportunity to lay my burdens at the foot of the cross. I can lay my own burdens down that I might take up the burdens of other's. I believe greatly in the value of this concept, but sometimes it's as if I feel guilty for my pain or the desire to share that pain. What I am beginning to discover though is that I am perhaps robbing brothers and sisters in Christ when I don't share. I am so very blessed when others share with me...why would I rob the family of God by not allowing them to be blessed in the same way? Quite frankly, I don't have to always be strong. I am so so thankful that the promises of God are true. But that doesn't mean I don't hurt. And it means that sometimes, it is ok just to share because it feels good or helps me be comforted. It's ok to say the questions and frustrations that are in my heart and mind. Even if I know I have hope and I know God is good, it is ok to say that knowing the truth and promises doesn't make the pain and questions go away. With that said, I can say that the pain of my niece's death has penetrated my heart so deeply. Yes, it has been several weeks. Yes, the services are over and the family and friends are back home. Yes, I am only the aunt and my sister and brother-in-law's pain is far greater and deeper than my own. But my heart still held and holds this baby. I would have given my life for her. Her preciousness overwhelms me. She changed me and continues to change me. The world is sad when a baby dies...the tragedy is recognized. But the world doesn't remember what it was like to be unable to look away from that tiny face, believing that nothing could be more beautiful or full of hope. The world doesn't know how to miss the loud squeaks she made as she sucked on her pacifier so hard, I wondered how such a tiny person could possibly make such loud noises. The world doesn't miss the weight of her on my chest. The world doesn't miss what it felt like to press my nose in the top of her head and take in the smell of her. The world doesn't know the feeling of realizing that instead of returning to college, I had the great privilege of devoting a year to loving and helping this little girl. The world doesn't know what it is like to suddenly be going back to college, having to answer the questions as people wonder why my plans changed. The world doesn't know the knot my heart forms as I try to answer the question, "How is your sister doing?" The world doesn't know what it is like to spend a week alongside my sister and her husband, planning the details of their daughter's funeral and burial. The world doesn't know the overwhelming pain of how helpless I feel, knowing that my sister's heart is hanging in shreds in another state. The world doesn't know what it is like to wake up after having yet another dream about Ellie night after night, trying to reach reality once more but caught up in the feeling of having her again for that short instant. As my heart is torn open at the thought of that tiny body being underground, the world can say it is just a shell. But what they don't know is that it is the most beautiful shell in the world. I share all this not because I am hopeless...but because I am hopeful. This hurts...so much. I won't deny the pain. I won't deny the questions, frustrations, and sometimes....anger. I won't say that each and every day of my life is not deeply affected by the hollow ache of loss. And I won't say that I can always be strong. But I will say that I don't always have to be strong. I am held so securely in the arms of the Great Comforter and I rejoice in that! However, that doesn't mean I don't really desire to feel those arms in an earthly form sometimes. Knowing this pain is what allows me to know the comfort that accompanies it. Maybe, as I am willing to be weak and receive comfort, I can be equipped to be the earthly arms of comfort for another person whose heart is aching.

(Picture from: www.crestock.com)

The Holiness of Pain

Some of you have known about the journey of my little niece, Ellianna Grace. There is something so special about this baby--she has held my heart since the very beginning of her little life. She was born on March 2nd, 11 weeks before her due date. She has battled hydrocephalus since birth, along with many other medical issues, one after another. Several weeks ago, she underwent her 3rd brain surgery, during which a permanent shunt was placed in her brain to drain the extra fluid. Days after, she was home from the hospital and had finally seemed to turn the corner. She was showing signs of Cerebral Palsy, and with guidance from God, I had made the decision to take a year off from school to move to Colorado and help my sister with Ellianna's care. As plans were finalized, I was so at peace about this decision and excited to see what God would do in me through this baby. But then the most drastic corner was turned. On Wednesday, July 13th, my sister told me that Ellie had been weak and overall not well that day and was admitted to the hospital. After some surgeries during the night and more tests, everything seemed to be falling apart. By Thursday afternoon, my sister was calling me at work to tell me that Ellie had the worst kind of infection in her brain, spine, and blood. 50-60% of her brain tissue had already died and doctors were preparing us for her departure from this earth. As I passed the information on to my family, the words I was saying sounded so hopeless, so surreal. I left work, packed in about 5 minutes, and took off for my mom's. The next morning I headed to Colorado to be with my sister and her family. My main purpose was to offer them support and comfort, but I felt like I needed their presence as much as or maybe more than they needed mine. I made the trip to Colorado alone, and although that didn't seem ideal, it ended up being a blessing in disguise. The 7 hours I had alone with God while driving are something I will always treasure. My confusion and anger melted away to the assurance of His love for me. Since Ellie's death, all I had been able to pray was "God help me!" During that car ride, all I could say over and over again through my tears was, "You are so good!" As my perspective changed, I wrote a letter to Ellie that I read at her funeral. Here it is:

Dearest Ellie-

I am so blessed to have been a part of your miraculous life. You are so tiny, yet you touched such a huge amount of people. There is something so very special about you. Like I used to tell your mommy, you have held a special part of me since the day you were born. I don’t think anyone has ever made me pray or plead for a miracle harder. And no one’s death has ever hurt so deeply as yours. At first, when you went to meet Jesus, I thought God had chosen not to give us a miracle. I told people we had lost you. But what I am not realizing is that God did give us a miracle. Every second of your life was and is a miracle, whether here on earth or in your glorious true home. Rather than being lost, you have been found. There will never be another uncertain day in your life. We don’t have to wonder what pain you are feeling, what milestones you may miss, or how you will live day-to-day life. We know where you are and though we can’t understand why, we know that God is good. Perhaps faith isn’t believing the worst won’t happen, but knowing that when it does, God is still victorious. And when God’s will is done, it isn’t the worst after all. The ache of your earthly absence is all but unbearable. But I am so happy for you. You were able to claim your royalty after such a short time in this fallen world. You are a Princess who will forever dwell in the presence of her King. You are so beautiful, cherished, and loved. I just know that your laughter is contagious, your smile is breath-taking, and your dance is flawless. I will always be your proud aunt.

All my love,

Aunt Mimi

I remember holding my sister when I arrived. All I could hear were our sobs and the voice in my head begging God to hold us. I remember cradling my nieces, ages 6 and 3 and wanting to save them from this nightmare. It is definitely one of the most painful experiences I have ever had. Yet, despite the agony, one word kept coming to mind as that nightmarish week wore on: Holy. In the midst of such darkness, God brought miracle after brilliant miracle. Here are a few of them:

Jacob's Salvation:

Ellie's older brother, Jacob (9), was away at camp when she died. My sister and her husband decided to let him finish out camp and then meet him there on the last day to share the news. On Saturday, they headed to the camp for breakfast, and then took Jacob to the chapel. They shared the sad news and as it turned out, Jacob had some news of his own: He had given his life to Christ during the week! I have been praying for this boy for years. In fact, many people have been. When he heard of Ellie's death, he flipped to 2 Corinthians 1:3-6 and asked to read it at Ellie's funeral. When he arrived home, more tears of mine came. But this time, they were tears of joy for this boy who was so very changed! God's timing is beautiful.

The Butterfly:

Ellie's older sister, Baylie, LOVES butterflies. When Ellie was taking her last breathes, her mom and dad told her to always send lots of butterflies for Baylie from heaven. Every afternoon after that, there was a huge yellow and black swallowtail butterfly that swooped into the backyard just for a moment. Every day. Without fail. On the day of the funeral, we were out front watching for the limo. The butterfly came early that day, and swooped around the front yard rather than the back.

More Butterflies:

Baylie has a butterfly garden. Every now and then, she receives a shipment of caterpillars and over 4 weeks, gets to watch them progress to butterflies. She got a shipment in the days before Ellie died, but was sad because the caterpillars were further along than usual. Sure enough, they formed their Chrysalis' within days. It normally takes 10 days for them to hatch into beautiful butterflies. However, on the painful morning of the viewing, we heard shouts from Baylie about her butterflies! Turns out they had hatched early! God gave this special little girl such a beautiful gift on one of the hardest days of her young life. Not to mention that Ellie's online obituary just happened to have butterflies (purple ones in fact--Ellie's color!) as a background, there were several butterflies dancing about during the grave-side service, and the Pastor said that an incredible amount of Monarchs had been flying past his office window all week.

The Rainbow:

The viewing was by far the hardest day for me and many others. When I walked in with my sister and her family to see that tiny body, we all just crumbled. I have never heard such heart-wrenching sobs. Later in the evening, some people were talking about a rainbow outside. I went outside to check it out and I could not believe my eyes. Over the city of Colorado Springs was the most vibrant, bright, vivid rainbow I had ever seen! The purple part, which is rarely seen, was just a tad brighter than the rest. I think I know why: Whenever Ellie was out in public in purple, people commented on how great she looked in it. Always. So purple became Ellie's color, her theme, a beautiful reminder of her. It's no coincidence that the purple stood out.

Ellianna's death hurts--deeper and different than any hurt I have felt before. I don't know why we had Ellie for such a short time. I don't know why God took her so suddenly, when months ago we may have been expecting it a little more. I don't understand why He had me change my plans, only to change them even more drastically. I don't understand it, but I don't have to. All I need to understand is that our God is good. So good. He is good when He gives life, and when He takes it. I know that the Bible is sprinkled full of verses about the blessing of trials, but there is nothing like living that blessing. The pain is still there--real, suffocating, almost unbearable at times. But God is still so present, whether in the beauty of a special rainbow, or simply His presence as I cry before Him. During the week, I felt an urge to wash my sister's feet. I didn't know why I wanted to, but I went ahead and did it. I guess I just wanted to be humbled before her. Pain is holy, and God has given her much of it. When God's people hurt, God is there. It's as if we are standing on holy ground. She obviously has been set aside as one of God's beautiful plans and pictures of comforting grace. And I as too feel the deep tug of sorrow and grief, I know that God has also set me aside for His purpose. I am broken-hearted. But God promises that He is near to the broken-hearted, and more than ever, I know that this promise is true. Sometimes the hurt of life takes my breath away. But even when I catch my breath, it is pulled away by the wonder and awe of what it means to suffer as a child of the King. How great is this God who pours out His love on His children!

Ellie's Rainbow

My niece, Baylie, and me taking in Ellie's rainbow

(Photos by: Tressa Stubbs. Used with permission.)

To Hold a Miracle

When my sister told me she was pregnant in the fall of last year, I was quite excited. This was to be her fourth child and I hadn't been able to be at any of her previous children's births because of distance, lack of transportation, etc. This time, however, was going to be different. Though we lived 7 hours away from eachother, I now had my own car. The baby was due right as school got out so I was going to head there as soon as I finished my last final and be able to be there for this little one's arrival! As I learned that the baby was a girl and her name was to be Ellianna Grace, I grew more and more excited! This was all such a dream come true and I couldn't wait until mid-May when I would hold this precious baby girl minutes after her birth. But like is so often true, God had other plans. On March second, I left a moving worship service to discover a text announcing the arrival of my niece: Ellianna Grace, 3lbs 5oz, 11 weeks early. I was in absolute shock. Soon after, I talked with my sister and she informed that a placental abruption had taken place and little Ellianna's life had been saved in the nick of time by an emergency C-section. Though she was small and therefore vulnerable, I just knew she would be fine. My last niece was also born 11 weeks early and after a long stay in the NICU and a few months of oxygen, she had recovered perfectly. But once again, God seemed to have other plans. Everyday as I heard updates, it seemed that Ellie was having to fight harder and harder for life. Her brain was bleeding, her heart was beating off and on, and she was having significant trouble breathing. She was having trouble digesting and her weight dropped, though she had hardly any to lose in the first place. I just wanted to be by my sisters side and I was heartbroken that I was called to focus on school instead. I wanted to hold this baby and pray over her, but instead I was praying miles and miles away. Before too long, little Ellie had to have surgery to put a shunt in her brain. I had a job interview that day but had had an hour drive just to pray for her. I got out of the interview and immediately checked my phone. There was a one-word text message from my sister: "Pray." My heart broke as I cried out to God to protect this baby. I begged Him to heal her and let us keep her. But all I heard was Him asking me to let go of her, release her into His hand. "No!" I told God. "You can't do this! You can't take her back! Why would you give her to us only to take her away?" I yelled at God and pleaded with Him. The more I cried, the more I knew I had to trust Him. I was reminded of His perfect love and care, His everlasting promises, and His soverignity. "Ok God. Thank you for giving us Ellie, no matter how long we may have her. I know she is Yours, I know you know Your plan for her life. If you want to take her, you can have her. I'm releasing her to You. But please, please hold us together when you take her!" Soon after the words left my mouth, my phone rang. As I answered and heard my sister sobbing on the other end, I second-guessed what I had just surrendered. Through my sister's tears and my own as well, I learned that Ellie had coded during surgery. The doctors had been able to bring her back but just barely, it seemed. She was on life support, unable to wake up. At that moment, I just knew we were going to lose her. When I got back to school, I gathered my friends together and we once again pleaded on Ellie's behalf. My heart was breaking but I knew my Father was holding it together. Ellie made it through the night and the next morning life support was able to be removed. It was an absolute miracle. I was confused as to why God had asked me to release her when He was going to let us hold on to her some more. But I was so glad He had. Ellie's journey did not grow much easier after that. She was finally able to come home with only oxygen and a heart monitor. However, she had to have a second brain surgery a couple weeks ago to remove scar tissue, and will have a third very soon to place a permanent shunt. When school ended, I immediatly headed to Colorado and held this precious baby in my arms, just hours after her second brain surgery. She was so tiny and frail--I was afraid to breathe for fear of breaking her. It was a miracle of miracles to set aside several days simply to love on little Ellie, to feed her, change her, listen to each tiny little breath. I looked at her perfect tiny face and couldn't help but smile. Why did I ever doubt God's plan for this little one? He knows everything about Ellie and always has. He knows the number of days in her life. He has set her aside for an incredible purpose! And you know what? Even if she had left us here on earth to join Him in her heavenly paradise already, victory would still have been won! That would have been God's plan for her, the number of her days He set aside. Ellianna's story is far, far from finished. She had endured much and has much left to endure. Brain surgery, treatments, therapies, and the possibility of different disabilites all lay ahead in this sweet girl's future. She is a fighter, yet she is also frail. I am so glad she is because this means that the strength of Jesus will mean so much more to her than those of us who tend to believe we are strong enough on our own. I don't know what God's plan for Ellianna is but I am honored to watch it unfold. How blessed I am to be part of a little baby's life which has been anything but "normal." God has obviously set her aside for a special purpose. His purposes for her must have included capturing the heart of her auntie. This tiny baby is teaching me what it is to trust God, what it is to be weak that He may be strong, and what it means to hold in my arms a beautiful, breath-taking miracle. Please pray for this most precious little one and those of us who are learning from her each and every day.

The sweetest of faces

Ellie was a model for our special photo shoot

Sweet beauty