Throughout the past 3 years or so, I have felt led to make this post. It’s quite obvious that it has taken some time to muster up the courage to write it out because, at times, I have ignored the push or felt that no one would want to read this. I have also felt that maybe this should be something that is kept private and intimate between Kyle, Mabry Kate and myself, but God has spoken to me many different times and in many different ways that this is something we should proclaim. This is something we should share. We are trusting that God will use our story for someone else in His own, perfect way. This is something that is feared by most, but it is our story. And while it is heartbreaking and gut-wrenching, it is also beautiful and hopeful. If this post reaches only one person, then it has been worth it.
It has been revealed to me that our disappointments are HIS appointments (through an amazing book titled As Silver Refined) – times where He meets us right where we are and wraps His loving arms around us, providing us with a peace and comfort that only He can provide – a type of peace that is beyond comprehension. But it’s felt. It’s hard to put into words, but I’m trusting that God will allow me to do so. Kyle and I felt and experienced this peace and hope, and though it’s a daily struggle, we continue to feel it in the absence of our daughter.
The story I’m speaking of is the story of February 7, 2015 – the day in which our sweet Mabry Kate left this earth for a place far better – a place of healing and restoration. We want to share it with anyone who will read it. While this post is lengthy, I pray you will read it until the end. We want everyone to know that we’ve trudged through the depths of despair, we’ve walked the journey that led our feet to literally stand on the edge of this earth, catching just a glimpse into the heavens through her earthly passing. That glimpse was enough to change our perspective of life. It was enough to allow us to shift our focus on eternal things, not temporary things. Are we perfect at this? Absolutely. NOT. But God is gracious in continually reminding us that eternal and lasting promises are what we should live for rather than the temporary pleasures of this world.
But before moving forward, what we want you to know most is that God has led us here. He gets all the glory and honor for picking us up and carrying us through the unimaginable. We did not do this on our own. In fact, I’m not sure where either of us would be if we did not put our trust in God. And let me admit without hesitation that this is not a story I would have chosen for us, and I find it hard to believe anyone would choose this. In my head I’ve kicked and screamed in a sense, trying to think of how I could change the outcome, how I could fix everything, how I could go back in time and have knowledge of Krabbe Disease before Mabry was born so that she could be saved – but the reality is that I can’t. I have NO control. I have none. When having this realization for the first time on her diagnosis day, I fully placed my trust in God. The second time I had this realization was the day she went to heaven. So read and know that I have prayed before writing this, that this story would be revealed as His, and that HE is the one deserving of glory. HE is the one that is sovereign over everything!
So, going back to the morning of February 7, 2015, it was a typical morning for us. Mabry was hooked up to a pulse-ox to monitor her heart rate and oxygen levels. It wasn’t out of the ordinary for these alarms to go off several times a day, and as expected that morning they did. She had a few alarms for an elevated heart rate. I had also given her an extra dose of a medication we gave to her as needed when she would have muscle spasms. This was not out of the ordinary either. In short, this day was typical for us. It was not a day that we foresaw being the day that the Lord would call her home.
The morning of February 7, 2015
February 7th was also a Saturday, and this particular Saturday she and Kyle had been invited to join some friends at a father-daughter Valentine’s dance at a nearby church. We had ordered them corsages, and Kyle had ventured out the mall to pick her out the perfect outfit. While he was gone, I was able to get a couple hours of cuddling in with my little love bug. It wasn’t often that I got to snuggle her up close and us both sleep peacefully. Often she would be uncomfortable or in pain, but that day was not the case. I remember waking up from our nap and just being so thankful for those moments.
Fast forward a little bit and Kyle returned with the perfect outfit complete with panty hose, shoes and a headband with a bow, of course. He then left again to go and steam his suit at his dad’s house. While he was gone, I took great honor in being the one who got to get her ready for such a special night. I gave her a bath, and I painted her fingernails for the first time ever. I took pictures of the whole process. I really wanted to paint her toenails, but I was running short on time. I can still see her precious fingers laying in my hand as I snapped a quick pic, and I can still smell the sweet fragrance of our favorite baby wash and lotion we used on her.
Before I go any further, I want to back up to diagnosis day and some of the fears this day brought along with it. We had traveled to Pittsburgh, PA after receiving the news in order to speak with an expert on Krabbe Disease. As this particular doctor mapped out for us what to expect throughout the next few months, one thing she said that stood out was that these children usually pass away in their sleep. Many parents will go into their room and discover that their precious child peacefully stopped breathing in their sleep. This for me was a huge fear. Not just the death part, but now knowing that there would be a possibility I would be alone during this time considering Kyle was working nights. I remember always having this fear and never wanting to be alone when this happened to our beautiful daughter.
With that in mind, going back to February 7th, the very last thing that was left in getting her ready was placing her little headband on her head. I carefully placed her in her bouncy seat and placed her headband on her head. I remember turning my head to look at something, and I don’t exactly remember what, but when I turned back everything began. Mabry’s eyes were so huge. I still remember her looking at me in a way that let me know she was longing for my help. Her beautiful face was every shade of blue, gray and purple you can imagine. Our sweet girl had lost the strength to overcome an apneic episode. She couldn’t take her next breath. I frantically picked up the phone and called Kyle. He was less than five minutes away, but it seemed like an eternity. In the slowest five minutes of my life, I put her on the floor and proceeded to try infant CPR. We had taken a class, but in my state of panic, my brain was not working to the best of its ability. In between the breaths I was breathing into her little body, I would scream out in helplessness over and over saying, “Please God! Please don’t take my baby! No! No! No! No! No!” I’ve never been one to speak out loud to God. I usually talk or plead in my mind, but on this day I was screaming at the top of my lungs, literally pleading with every fiber of my being.
In the middle of all of this, my parents as well as my sister and brother-in-law were on their way to our house to take pictures before Mabry and Kyle were supposed to leave for their little date. As God so intricately planned, my parents were casually walking in the front door as Kyle was sprinting desperately behind them. I remember my mom turning her head and seeing me on the floor with her and saying in alarm, “What’s wrong?” I don’t remember if I said anything or if my tears and pleads spoke for themselves, but my mom and Kyle moved her to the couch and started their best efforts to save her life.
We always tried to avoid the hospital with Mabry because her disease is so rare, and most hospitals do not know the proper way to care for her. We had so much medical equipment at home, that in most circumstances, we could intervene for ourselves, but it was soon evident that that wasn’t the case this time. I picked up my phone to call 9-1-1, but I could literally not hold the phone still in order to press those three numbers. I was shaking uncontrollably. I remember my precious dad grabbing the phone from my hands and making the dreaded call for me.
From there, everything was a blur. It was a frantic ambulance ride to the hospital, and for whatever reason we had a police escort who would go out in the middle of intersections and block the traffic before we passed through. We arrived at the hospital and we were desperate to save her. Prior to this day we had agreed to sign a DNR. For those of you who don’t know what that means, it’s short for “Do not resuscitate.” We as Mabry’s parents had to make the decision to, if worse came to worse, not put her on a ventilator. We made this decision out of sound mind, not in the course of panic. We decided that we wanted quality of life for her rather than quantity. But in the heat of the moment, I was desperate for anything we could do to save her. I remember Kyle and my mom pulling me in close and reminding me of what we had talked about when we weren’t in such a desperate state. If it’s her time, it’s her time. There has never been anything more difficult in my life than standing by and watching our child make her way to the end of her short life here on earth.
Throughout the next 3-4 hours Kyle and I passed her back and forth, loving on her, kissing her, whispering to her, singing to her, dancing with her, and assuring her that we would be okay, that she was free to go and be healed. Not that we believe that was why she went, but if she’s anything like her mother, a little reassurance doesn’t hurt; and if anything it was comforting for us to whisper those words of reassurance to her. And let me remind you, that my biggest fear had been being alone when she passed. I was anything but alone. Not only was my husband there, but a hallway lined with friends and family as they stood outside the room we were in were there too.
During this time our loved ones made their way in and out of the tiny, cold and dark room offering all they could in the form of prayers, hugs, tears and condolences. These people surrounding us were amazing. I don’t know what we would have done without them there. Some of the prayers that were prayed over us were some of the most incredible prayers I’ve ever heard. The strength these loved ones showed in the face of our pain was uplifting for us. The most profound prayer I remember is one of thanksgiving – thanking God for Mabry’s life, for the time we had with her, for the memories we made with her, for her heavenly healing and for the eternity we will get with her. I remember when this prayer was prayed, I was taken aback, but then I realized that we did have so much to be thankful for.
One of the reasons I have struggled writing this in addition to the ones I mentioned in the beginning is that I struggle to think I could possibly put such a strong mix of emotions into words. I’m trusting God can help me with this. That day was a mix of the most suffocating, excruciating and agonizing pain imaginable combined the most assuring, peaceful and tender feeling of love that I honestly cannot comprehend. My mind was the perfect spiritual battleground – because when you are succumbing to such pain, Satan tries to convince you of his lies.
One example is the face of death. Upon first look, death seems permanent. It seems unwavering; like it’s the end of everything. The separation seems unbearable and eternal. Those are Satan’s lies. In between his lies, my mind would fill with truth. That this is not the end, but only the beginning. That we weren’t saying goodbye, but only see you later. That the moment she left us, was one moment closer to us being reunited with her again in eternity. That is God’s love and grace. And here I’ll insert a quote from As Silver Refined, as it goes perfectly, “Strange as it may seem, this disappointment is something God allowed in our lives after filtering it through His sovereign fingers of love.”
Then some question our beliefs saying things like, “How can you believe a loving God would allow such pain in your life and such a terrible disease into the life of a child?” Friends, I don’t have all the answers, and my mind is not equipped to know. All I can say to that is our God is sovereign over all, and that every intricate detail He has set into motion is for the good of those who love Him. Again from As Silver Refined, “Stop and consider some of the things you’ve wanted God to make happen immediately. What would you have missed if He had? If those disappointments had been bypassed, how much poorer would you be for it?”
Through this great disappointment in our lives, God was gracious in providing us rest in His loving arms, assurance of His eternal promises and hope through a glimpse into heaven. Kyle was holding Mabry Kate as she took her last breath. Through the pain I could feel the rest and peace, but could Kyle? This is what I wondered and worried about often following this experience, but again God provided. One day Kyle just came to me and told me how he would never have another excuse not to believe God, his promises and that heaven exists. He went on to explain that feeling Mabry’s very existence pass from his own arms into the loving arms of our Creator was something he could not deny. He knew from that moment that all the questions Satan may bring to his mind regarding the existence of our God and his promises were lies. His faith in God could put to rest the blatant lies of our enemy.
I want to share a couple verses that remind us that just because we believe, love and trust God does not mean we are never going to experience pain and disappointment. I was reminded of these verses while reading As Silver Refined for the second time. It’s truly an amazing read for anyone in any situation. But here is what God’s word says…
Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, that you may be perfect and complete, lacking in nothing.
Not only this, but we also exult in our tribulations, knowing that tribulation brings about perseverance; and perseverance, proven character; and proven character, hope; and hope does not disappoint, because the love of God has been poured out within our hearts through the Holy Spirit who was given to us.
We are convinced that neither death, nor life, nor angels, nor principalities, not things present, nor things to come, nor powers, nor height, nor depth, nor any other created thing, shall be able to separate us from the love of God which is in Christ Jesus our Lord.
These words bring comfort to our souls, and we are hopeful it will to yours as well. They are God’s words and promises, and they are truth. Going back to all my questions I had when considering writing out this day as a testimony, I know God spoke to me through these words telling me that this could bring hope to someone else’s life, even if it were just one life. It’s all worth it. And perhaps the part of the book, As Silver Refined, I have resonated most with so far was this:
God may not let you see at the moment, but He will use your trusting submissiveness to minister to others. As you so well know, most of the world around you doesn’t read the Bible. So what does God do? God shows the world pictures of Himself and of the sufficiency of His grace through your life. He gives the world a living epistle – you. And oftentimes He’ll place you, His living epistle, in the same kind of fire, the same kind of disappointments and trials that so many others experience. He’ll put you with them in the same hospital, or He’ll allow you to suffer rejection or allow you to live with a rebel or to experience a financial blow. In any of a variety of disappointments, He lets you hurt as others hurt, knowing that the way in which you handle this hurt will be an undeniable testimony that there’s something awesomely different about you.
Who knows if you even feel this way, but if you’re feeling there’s something different or “awesomely different” about us or our situation, it’s nothing to do with us, but EVERYTHING to do with God. The only way we can live in peace and rest in his sovereignty is because of the faith we have in Him and the eternal focus we have on things above. Are we perfect? Um, no. There are many days we continue in a spiritual struggle. So please don’t think that’s what we are trying to say or what we think of ourselves. I’m probably my toughest critic of anyone in this world, but when I get off track or feel like I’m losing my mind, God is always sweet to meet me in my confusion, disappointment, anger, bitterness, depression, sadness, loneliness or whatever lowly feeling I may experience. I just have to have my eyes open to see His tender and loving mercies, or I may miss what goodness He has for me.