Certainty in the Uncertain

It’s been quite a while since I have actually sat down and taken the time to write out my thoughts. I always have this longing to, but my brain works a bit differently these days. I feel like there is a fog that doesn’t let me think much past the present situations. I’m certain it’s a coping mechanism to protect my heart and mind from the hardships we’ve endured. Sometimes though, I think it’s therapeutic to reflect back and feel all the feels. While there was hurt beyond anything I could imagine, there was just as much beauty and grace from God. It truly was and still is “beauty from ashes.” There is so much I want to share with the world, but I am always afraid I won’t be able to accurately portray it in words, so I’m praying God speaks as I am here, putting fear aside. Bear with me and read to the end. God wants to encourage you today.

These days we are living in a time of uncertainty, where new terms like “social distancing” or “distance learning” are in full effect and birthday parades and front porch family pictures are the new norm. While much of this fiasco that’s ensuing feels like uncharted territory, I can’t help but think back on and compare parts of it to the road Kyle and I have walked with our most precious gifts, Mabry Kate and Owen. And I know we aren’t the only ones who have walked this walk, or walked a hard road. We all have our own hardships. And this time during the pandemic and our own personal journeys can be scary, uncertain, unpredictable, and chaotic because we have no control. But here’s the kicker – we never have had control.

It is one of the biggest realizations God has brought to the forefront mind in recent years, and honestly it’s probably one of my favorites – You. Are. Not. In. Control.

You might be wondering why having no control is one of my favorite lessons God has taught me through my children on more than one occasion. And it’s simply because as I’ve learned this, I’m glad I’m not in control. I’m thankful I serve a loving God who is also my Savior and Father. He is also the Creator of the universe, and He has already written my story, our story, and your story. Learning that I truly had no control was a tough pill to swallow at first. The first time I truly felt no control was with Mabry’s diagnosis.

As a mother or father, you’re supposed to be able to protect your children. You’re supposed to be able to fix everything and make everything better. In our case, there was nothing we could do. By not being able to do anything to save her life, it caused us to lean in closer and trust in God. Okay, actually it caused us to collapse in His arms, crying, kicking, and screaming and look to Him and trust in Him like never before; like a desperate child in the arms of their father looking for comfort because they don’t know what else to do.

And while this lesson was initially one of pain, sorrow, helplessness and desperation, it soon became one of comfort and relief. You see, when you feel like you have nowhere else to turn, you really do. God is always there ready to comfort you. You are safe in His arms. This newfound trust that I thought I had always carried with me brought me a newfound level of comfort that I’ve never felt in my life. It was and still is like an enormous weight had been lifted from my shoulders.

The second time this lesson of control left an imprint on my heart forever was when our loving God called Mabry to her forever home, which is also our forever home. Was I mad that our time with her was cut short? Of course! I still am…well, maybe not as much mad anymore as I am disappointed and saddened with each new milestone that comes to pass, like this being the year she was supposed to start kindergarten. So yeah, I don’t agree with His decision to take her home so early. I mean I screamed at Him and pleaded with Him the day she died. All that to say that while I don’t like it, I trust Him. I trust that His plan is greater than the very best plan my diluted and simple mind could ever dream up. So with that, I have learned to rest from the worries and doubts and fears and what ifs and if onlys. Don’t get me wrong, I’m by no means saying I never worry, doubt, fear or question, but even when I do, I ultimately find myself coming back to the same place God so graciously led me back in September of 2014…to rest in His arms because He is in control.

He’s shown me this again and again and again since then. The same lesson was revealed in our journey with Owen less than 2 months after Mabry passed away. Unless you’ve been through a stem cell transplant personally or with a loved one, you cannot imagine the number of complications that can result from the entire process. The unbelievable amount of tubes, IV lines, and machines Owen was hooked up to during his transplant was overwhelming. The number of medications it took to keep his body from shutting down was insanity. Even when we finally were able to leave the hospital after 110 days there, we still had to administer 13 medications ourselves, one of which was an IV medication. We had to learn to change dressings, clean caps on the end of his central line which was a sterile process (talk about a lot of pressure considering those lines led straight to a main artery in his heart), and even draw blood from his central line for labs just to name a few things.

If we had taken the time and energy to question every move the nurses, nurse practitioners, doctors, CNAs, therapists, etc. were making, it would have been enough to drive anyone crazy. Instead, Kyle and I placed our trust in God’s sovereign plan. We learned from Mabry’s beautiful life that He already had a plan and a purpose for Owen’s life too, and we just needed to trust it no matter the circumstance or outcome.

 

Five years later, we are still living it out with our precious miracle Owen. We still have to place the uncertain future in His hands and live day by day. But when I think about the words “uncertain future” a little deeper, isn’t everyone’s future uncertain? No one knows for sure what tomorrow will bring. Our future with Owen just so happens to get that label because of our rare circumstance with Krabbe disease, but ultimately none of us know what is to come.

I think a lot of us can relate to the uncertainty of the future with the current pandemic that has taken the spotlight. There is uncertainty in when things will open up, uncertainty in whether or not it is safe to go out in public, uncertainty in the development of a vaccine, uncertainty in jobs, uncertainty in so many things. And while uncertainty is most certainly scary, let me encourage you that there is no One better to be in control than God, the sole Creator of the universe. The universe! His plan is perfect. Our minds are not equipped to understand fully the perfection of His plan just yet, but I look forward to the day it will be revealed to me, to you, and to anyone who places their trust in His sovereignty. There is no greater comfort than that.

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. ¹² Then you will call on me and come and pray to me, and I will listen to you. ¹³ You will seek me and find me when you seek me with all your heart. ¹⁴ I will be found by you,” declares the Lord, “and will bring you back from captivity.

Jeremiah 29:11-14

Glimpses of Heaven

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 7^th 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 7^th, 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.            

James 1:2-4

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.

Romans 5:3-5

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.

Romans 8:36-39

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.

Reality and Results

Every year around this time, Owen has to undergo a series of tests to make sure that the dreadful and evil disease known as Krabbe Leukodystrophy isn’t showing it’s nasty face in our Mickey Mouse lovin’, Goldfish and peach eatin’, always on the move, lovingly amazing, full-of-life son. And every year around this time, Kyle and I, without meaning to and with good reason, let worry and fear seep into our minds. We question every little thing that doesn’t seem normal or typical.

The title of this blog post is Reality and Results, so first I just want to inform people of the reality of the disease while also shedding a little light of our reality of what we face as parents. And of course sharing results from our most recent visit to Duke.

First the disease. As most of you know, we know this disease on a completely different spectrum with our precious daughter, Mabry Kate. Because of the rarity of Krabbe Leukodystrophy, she was diagnosed too late to receive the treatment Owen did. Without treatment (which is a totally different battle itself), we watched this disease rob her of every ability — some very obvious such as sitting up, rolling over, crawling, smiling, talking, etc., but others not so obvious and things we often take for granted such as moving of arms and legs, swallowing, coughing, crying, eating, and eventually breathing.

Given what our innocent and beautiful daughter endured, it’s only natural for us as parents to let worry and fear creep into our minds when reality hits and we remember that Owen still has Krabbe Leukodystrophy. His treatment is not a cure (which I would love to explain, but that’s a completely separate post in and of itself), but as chemotherapy and various other treatments aren’t exactly cures for diseases such as cancer, we hope his treatment will always be enough to keep Krabbe from ever progressing in his little body.

All that to say that sometimes, in our reality, we see Owen do things like stand for a few seconds and take 8 steps on his own one day, and then the next he buckles his knees and won’t stand and laughs uncomfortably when we try to get him to walk. We sometimes immediately think…Is this disease related? Has Krabbe started progressing? Has he lost an ability because of the disease? Is he going to have to suffer the way Mabry did? -OR- Is he just being stubborn like his momma? Is he being a typical toddler? Is he doing this just to push our buttons?

I know without even having a conversation with Kyle, that disease-related questions pop into his mind, and he knows the same about me. We hardly ever mention the disease from the other spectrum as we know it. We both innately do this to try to keep the other from worrying or questioning anything other than the fact that Owen is stubborn. We do it to protect each other’s hearts.

And even then we have to remember, no matter what the answer is to those questions, God is in control of Owen’s life. Thank goodness. Because while lots of time fear and worry try to take over our minds, God undoubtedly provides a peace that surpasses all understanding when we remember to give it all over to Him. Which I confess, is not every time. Owen inherited his stubbornness from me unfortunately, and my stubbornness often keeps me from feeling, knowing and accepting God’s comfort when I need it most. This is something I struggle with and will continue to work on.

And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.

Philippians 4:7

And now the results.

Just to give you an idea (I’m not even sure I can remember all of them), Owen had numerous tests through bloodwork, in addition to anesthesia for an MRI of his brain, EEG (looks for seizure activity), BAER (looks at how well the brain communicates with his ears), VEP (looks at how well the brain communicates with his eyes), chest X-ray, echocardiogram, nerve conduction study, pulmonary function testing, dentist appointment, anesthesia for dental work, behavioral analysis and testing, and physical therapy analysis. I think that about sums it up?!

All results are in and Kyle and I spoke with his amazing doctor, Dr. Joanne Kurtzberg. She very thoroughly walked us through what each report said. Of course we were on edge waiting for her call, but to put it simply, the results were all amazing!

All of his tests showed that the results where either unchanged (which is great with this disease) or normal. To hear her say the word normal over and over again seemed so surreal and was such a breath of fresh air for the both of us, because we know our family is far from what society deems as normal. It also made me smile at the significant purpose Mabry Kate’s life served for Owen. I smile because I see her in him every day. I am so thankful to the Lord for that blessing in the midst of all we have been through as a family.

The most encouraging result , in my opinion (and there are many to be encouraged about), is one blood draw that looks at levels of psychosine. Psychosine is a lipid that builds up in the bodies of individuals who have Krabbe Leukodystrophy. This lipid is responsible for all the damage and destruction to the body. Many individuals who have undergone transplant start with higher levels of psychosine prior to treatment, and that number decreases but often doesn’t normalize. In Owen’s case, his has normalized!!! To be considered normal, you have to have a level of less that 10, and Owen’s level was 7.5!!! Praise the Lord!

So for another year, we can rest easy knowing that according to Dr. Kurtzberg, there are no signs of Krabbe in his body. We know this upcoming year, until the next gamut of tests, there will be worry and fear and uncertaintly, but we will continue to remind ourselves of what is certain…God is in control and we trust His will, though sometimes we don’t agree with it. We know it’s best.

…give thanks in all circumstances; for this is the will of God in Christ Jesus for you.

1 Thessalonians 5:8

 

Grief is…

I need somewhere for my grief to go temporarily, so here I am writing with really no direction…

I have come to learn that grief really has no place to go. It runs rampant in my mind, and I can feel it infiltrate throughout my body. It’s a deep, passionate love that I have within me to selflessly give, but I cannot. It’s an endless longing to be in the presence of my beloved daughter and sweet daddy, but eternity is where they are. It’s a constant, aching pain that won’t relent, ever.  It’s a looming cloud over my mind that leaves a thick layer of fog atop some of my fondest memories. And it never stops. It literally has no place to go.

Grief is also an experience. One that is real, yet is masked by society’s views that we, the grieving, are able to just sweep it under the rug and move on with our lives. It’s like running a marathon every single day whether you want to or not. It’s like imprisoning the love I desire to give for a lifetime. It’s like being lost at sea, all alone, with no place to go. It’s like a constant stabbing to the heart with no end in sight. It’s like driving down memory lane, but all you see is a thick, gray fog everywhere you look. Only once in a while does it seem as though the fog is lifting, only to thicken back up again and leave you wondering if what you remember is what really was.

And yet the drive continues, along windy mountain roads, leading me to the highest of highs and the lowest of lows. The times I’m headed in a downward spiral toward the bottom of the mountain is when my grief turns to anger, bitterness, stubbornness, jealousy, and every undesirable characteristic known to humankind. And as I’m spiraling out of control, I know this is not where I want to be. I don’t want to be at the bottom of the mountain where the brightness of the day is eclipsed by the thick layer of trees. I don’t want to be at the bottom where I can’t open my eyes to see what is out there for me. I know this isn’t what I want, but it happens anyway, because my grief has no where to go.

On the contrary though, there are days in which the drive through grief’s windy roads leads me to the top of the mountain, and the fog has lifted gifting me a clear view. This view is that of hope. My grief still has no where to go, and it’s a painful experience, but I continue to rise from the bottom of the mountain. There are days I get stuck and days I go downward, but hope is always on my side and is a gift from God.

His word says in Romans 5:3-5… And 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.

I am coming to the understanding that I cannot depend on other’s in this world to understand my grief, take on my grief, or to even just meet me in my grief. It’s like an unspoken rule that grief, especially that in which results from the loss of a child, should be buried, never to be embraced. I am slowly learning that GOD will always meet me in my grief. He is the only one that can take this grief and turn it into perseverance, proven character, and ultimately into HOPE.

Grief has an excruciatingly painful side, and yet also has a beautifully bittersweet side. Grief is what keeps me holding onto that hope that God has so graciously provided me with. The hope that my family and I will one day be reunited with my beautiful baby girl, and of course my dad too!

Grief is painful, but I’ll bear that pain for the rest of my days, even when I feel alone. It keeps me holding on, and God will always meet me exactly where I am no matter when I need Him.

I’m glad I started writing to give my grief a temporary resting place. It changed my perspective from when I started this very article. Thank you, Jesus.

 

What More Do We Need?

I’ll admit, lately I haven’t been the most disciplined follower of Christ. I haven’t spent as much time in His word as I need to. It should be a daily thing I do, just like eating a meal. As a matter of fact, it’s even more crucial for my life that I dive into His word than it is for me to eat. Anyway, this week has been my most consistent week in quite sometime, and He is speaking to me. I can really tell a difference in my days.

God has laid it on my heart to share with you what He has shown me today. 1 John has been my book of choice this week after receiving some advice from a wonderful person who has been such an encouragement for me in the face of loss. The reason it was necessary for me to read this book was to evaluate my own life. I haven’t been confident in it. Am I doing the things I need to be doing to strengthen my walk with Christ? There are many answers to this question, and John gives us a series of tests that we can use to see where we measure up.

As I was reading chapter 5 of 1 John, something really struck me as amazing. I feel like many of us (or maybe it’s just me) look to other people’s advice, testimonies, and knowledge of scripture for reassurance and wisdom. What I learned may be simple for some, but for me was HUGE. We have God’s testimony. Bear with me as I pray you follow what I write, and do my best to relay God’s message to all of us.

In 1 John 5:9-10 it says this: If we receive the testimony of men, the testimony of God is greater; for the testimony of God is this, that He has testified concerning His Son. The one who believes in the Son of God has the testimony in himself; the one who does not believe God has made Him a liar, because he has not believed in the testimony that God has given concerning His son.

It is very important to hear and see other people’s testimonies so that we can see how God works in the lives of others, but THE GOD OF THE UNIVERSE was sweet to GIVE us HIS TESTIMONY too! How cool is that?

To be more specific, my Bible references (thank goodness for cross-references) two times in which God testifies, or declares, to man that Jesus is the Son of God. Both of these references mentioned are in Matthew’s gospel, once at Jesus’s baptism and once at Jesus’s transfiguration:

Matthew 3:16-17 – After being baptized, Jesus came up immediately from the water; and behold, the heavens were opened, and he saw the Spirit of God descending as a dove and lighting on Him, and behold, a voice out of the heavens said, “This is My beloved Son, in whom I am well-pleased.”

And…

Matthew 17:5 – While he was still speaking, a bright cloud overshadowed them, and behold, a voice out of the cloud said, “This is My beloved Son, with whom I am well-pleased; listen to Him!”

God proclaims that Jesus is His Son! He tells us very plainly to listen to Him! I don’t know about you, but that is even more motivation to continually strengthen my daily walk with Jesus; the fact that the God who created the sun, the moon, the stars, the planets, the animals and plants, my family, my friends, my beautiful Mabry Kate and Owen…He Himself said Jesus is His Son!

The God who created my family has sweetly given us HIS TESTIMONY…that Jesus is His Son, and that by His son, we have eternal life…meaning that we will see Mabry again.

And then going back to 1 John 5:11, it says this…And the testimony is this, that God has given us eternal life, and this life is in His Son.

So God is testifying to us that Jesus is His Son and in His Son is eternal life. That’s it. That’s all we need, because it goes on to say in verse 12 that, He who has the Son has the life; he who does not have the Son of God does not have life.

It’s pretty black and white. If you have believed and accepted Jesus Christ as your Savior, Lord, and Master of your life, YOU HAVE ETERNAL LIFE THROUGH HIM. If you haven’t, all you have to do is confess your sins, believe Jesus is Son of God, and accept Him into your heart. This is not any new revelation, of course. But for me, it was eye-opening to see that we don’t need the testimony of man because we have the testimony of God. What more do we need?

Look Beyond the Surface

It’s been more than a year since I have written on my blog, but it’s something I think about often. I’ve experienced what seems to be some sort of writer’s block where I desire to let the words out, but my mind and body won’t let me. Anyway, here I am!

Today I want to write about yet another lesson I learned from my sweet children, of course. Who knew such tiny humans could teach you so many valuable lessons?

So my friend and I took Owen to the local zoo this past Sunday. They have a huge splash pad there that he absolutely loves to walk through! Anyway, we have a handicap placard for Owen. We are very conscientious about when we use it. I won’t use it at most places we go, but for Owen’s sake, I will use it places where there are large parking lots. Owen LOVES to walk, but it is a HUGE task for him.

Upon arriving at the zoo, there was one handicap spot available at the very end of the row. This spot was actually further away from the entrance than some of the regular spots, and you actually couldn’t even see the entrance from where we were. Nevertheless, I parked there, got Owen and all his stuff out, and put him down to start walking. As he began taking steps, it was obvious that this was going to be a daunting task for him…slightly uphill with cars here and there driving by, as it was only about an hour before closing time.  A few moments later, I decided to pick him up and carry him to the entrance while my friend grabbed his walker and carried it for us.

As we approached the sidewalk that leads to the zoo entrance, out of the corner of my eye I saw a man waiting to load up his own child into his truck. It seemed he was talking out loud to someone, and it wasn’t until the third time he said, “Handicap, huh?” that I realized he was talking to me.

I responded with a very confident, “Are you talking to me?” And as suspected, he was.

He proceeded to say some really hateful things to us, and of course I became defensive. I told him he had no idea what our story was and that this was not his business. He continued to shake his head in what seemed to be frustration and disgust and then said, “It is my business because I pay my taxes, and I don’t pay for little s*** like that,” as he nodded his head as if to point at Owen who was now on his walker.

As I think any parent would do, when you decide to verbally ridicule my innocent two-year-old who has, in fact, been through more in his two years than most grown adults and is defying the odds of a “terminal illness,” I began to become unglued. At this point I was yelling, and the only thing I could think to yell was for him to shut up! He needed to shut up before he said something else that made me even more mad.

I do not deal well with any type of confrontation, and when it’s regarding my son who has done nothing wrong, it’s just a million times worse. My body was literally shaking from anger for a half hour following the incident.

As Owen was playing and laughing at the splash pad without a care in the world, I couldn’t help but think about how I definitely didn’t handle it in the best way I could have. I kept telling my friend that if someone had told me this situation was going to arise, I think I would have said that I would handle it with grace while possibly sharing Mabry Kate and Owen’s story. It’s not until your in the situation, with the real and raw emotions, that you find out just how you would react.

Anyway, all this to say that you should never judge a book by it’s cover. I know it’s so cliche, and I do it all the time too, but it’s absolutely the truth. There’s so much more beyond the surface of what you see. What this man described as “little s***” in his eyes and unworthy of obtaining a handicap placard is in fact a boy who has been diagnosed with a “terminal illness”… a boy who shouldn’t have lived to be two years old…a boy who has endured extremely high doses of chemotherapy…a boy who has lived through countless surgeries and procedures…a boy whose immune system was wiped out to nothing…a boy who spent his first 110 days of life in a hospital bed, and because of that, experiences delays in his milestones. This boy is fierce, he is brave, he is a miracle, and he is a hero.

And behind that boy is the story of a little girl. This little girl was also diagnosed with a terminal illness, but she wasn’t as blessed as her little brother to receive the treatment that he did. However, it was this little girl that saved her brother’s life. It’s this little girl who is saving lives of other children through a law that bears her name. It’s this beautiful little girl that brought a community together in love and harmony and changed the way so many view life. This girl is fierce, she is brave, she is a miracle, she is a hero.

To the man at the zoo,

I hope you never have to endure the loss of a child. I hope you never have to watch your children suffer in the way that we have. As I sit here and say not to judge a book by it’s cover, I don’t know your story either, but I hope you learn to show grace to those around you. I hope you come to see that you do not know what’s beyond the surface of a stranger. You do not know the journey that people have traveled or what has classified my son as handicapped. This isn’t a category we ever wanted our children to fall under, but God has given us the most beautiful, special children that have taught us more without speaking a word than any man could dream of doing. I hope the next time you see someone that you wouldn’t classify as handicapped, that you would bite your tongue and realize you don’t know where these people have been. I hope next time you will take a moment to be thankful for what you have and be slower to judge. This is a lesson from my sweet children that we can all learn.

Sincerely,

One Proud Momma

A Step Back

Have you ever read the poem that ends with this…”He whispered, ‘My precious child, I love you and will never leave you; never, ever, during your trials and testings. When you saw only one set of footprints, it was then that I carried you.'”?

I don’t exactly remember the first time I read or heard this, but I do know that when I was made aware of it I thought to myself that it sure was a comforting thought, in a figurative way. I never really thought about it in a literal sense. At least not until about the last month.

Apart from visiting Duke every few months, Owen has to visit our local children’s hospital for blood checks every couple weeks…the same hospital Mabry Kate passed away in. In fact, the entrance to the clinic is right in between the ambulance entrance and the ER entrance into the hospital. Mabry Kate and I  rode in an ambulance, followed closely by her father and Mia and Papaw the night she passed away. We entered into the hospital in that exact ambulance entrance and exited in that exact ER entrance. We left with empty arms, broken hearts and shattered dreams of the future we had planned for her.

But how? How in the world did we manage to gather ourselves enough to exit the hospital empty handed? How could we put one foot in front of the other? How could we muster up the strength to get in a car without her? How could we even breathe?

As I enter into the clinic with Owen, I can’t help but take a step back and ponder those recollections. It blows my mind, really. All the “how” questions flood my thoughts. The first few times I recalled that night, I didn’t have answers. Then, one day it hit me…

We couldn’t gather ourselves and exit alone. We couldn’t put one step in front of the other. We couldn’t muster up the strength to get in the car. We couldn’t breathe. But Jesus could and did and does all those things for us. It was then that He carried us. It was then that He wrapped his loving arms around us. It was then that He breathed for us. He alone is our strength and our comfort.

I’ve wanted to write about this for quite sometime, and it’s hard to gather my thoughts lately, but after spending a week with some of the bravest people I have ever met at Hunter’s Hope Family Symposium, I was reminded that Jesus also carries them through their battles with Krabbe disease or other leukodystropies like ALD and MLD as well. I heard brave and broken-hearted stories of other beloved children’s “diagnostic odysseys” and hospitalizations and passings. I heard the familiar sounds of suction machines, oxygen concentrators and pulse-ox machines.

BUT…I also heard laughter! I heard heartwarming and funny stories. I saw love — which is exactly what Jesus is. He is love and He carries us all. Not just those of us who have walked the path of a leukodystrophy, but everyone. Whether you’ve encountered another kind of illness or disease, death of a loved one, divorce, loss of a job, or ANYTHING…whether you realize it or not, Jesus carried you through it. He is the only reason you can live and move and breathe.

I challenge you to take a step back and examine your trials and testings. I hope that you see you could not face those alone. I hope you see that Jesus never leaves nor forsakes you, and that He has and will continue to carry you through the times you don’t think you can survive.

“Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand…For I, the Lord your God, hold your right hand; it is I who says to you, “Fear not, I am the one who helps you.”

Isaiah 41:10,13

Confession

It’s been a while since I have blogged. I think about it almost daily. Writing is a form of therapy for me, but for the last few months I just can’t bring myself to do it. But today, here I am. And I have a confession…

I’m a complete mess.

Sometimes I think on the outside it may look or seem as though I have it all together in the midst of all the brokenness and life storms my family has somehow meandered through throughout the past couple years. I think there may be a common misconception that because of the faith I rest on, there are less struggles, less questioning God, less tears, less anger, and the list goes on. Well I’m here to tell you that couldn’t be further from the truth. Yes, my faith is my stronghold, but I am human.

Being human means being broken. It means asking questions. It means getting angry. It means being confused about God’s mighty plan. It means the tears flow and the struggles abound.

On a daily basis, I’m broken. I’m broken without my daughter and I’m broken without my dad, neither of which I can do anything about.

I ask questions…Why did Mabry have to suffer? Why did she have to go so young? I know she’s made a difference, but why couldn’t she make a difference in a different way? Why can’t I raise my daughter and do all the fun mother/daughter things everyone stereotypically does through the years? Why didn’t Tennessee pass laws mandating screening for Krabbe four years ago when they had the chance? Why can’t Mabry and Owen grow up together?

Why my dad? Why so suddenly? Why so young? Why him when he’s the life of the party and the light in the crowd? Why? Why? Why? Why?

And then… I get angry and confused. Many times, the tears flow.

But then there’s this:

For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord. For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts higher than your thoughts.  Isaiah 55:9

We were not designed to understand God’s plan. I tend to forget that sometimes. He will eventually reveal to us His perfect plan, but it’s not up to us to figure it out. It’s up to us to trust Him. And while I disagree with much that has happened recently, I’m not God. Which reminds me of a song I have found comfort in lately. It’s called “Thy Will” by Hillary Scott. My husband said it perfectly today when he asked me if this was our anthem. And I think it is, but I also think it’s everyone’s anthem. Everyone has struggles and can relate to what this song so beautifully conveys:

Thy will be done.

I know you’re good, but this don’t feel good right now.

And I know you think of things I could never think about.

It’s hard to count it all joy, distracted by the noise.

Just trying to make sense, of all your promises.

Sometimes I gotta stop, remember that you’re God, and I am not. So…

Thy will be done. Thy will be done. Thy will be done.

Like a child on my knees all that comes to me is…

Thy will be done. Thy will be done. Thy will.

I know you see me. I know you hear me, Lord.

Your plans are for me, goodness you have in store.

I know you see me. I know you hear me, Lord.

My most favorite verse of the whole song says, “Sometimes I gotta stop, remember that you’re God, and I am not.” This is a welcomed reminder that I don’t have a clue and I’m an absolute mess, but God is always there holding me. Not only that, but He has my best interests in mind. He has YOUR best interests in mind. Our God is a God of compassion. When we hurt, He hurts, just as you hurt for your children when they are hurting. My God has compassion for me and showers me with love on a daily basis. Sometimes I get angry, sometimes I ask questions, sometimes I cry so hard I literally can’t breathe, but through it all… God is there.

Tonight I was a mess. Tonight I cried. Tonight I asked questions. Tonight I got angry and confused. But tonight, God reminded me and wants me to remind you that He is compassionate and He IS love. He created the WHOLE universe for crying out loud. How can we not trust Him?

 

 

 

My Take on Grief

Grief. My whole life I thought I had a decent understanding of what exactly grief was, but throughout the past year and half, I have come to find out that I was wrong. The official definition of grief is “deep sorrow,” but that is just scratching the surface of it’s true meaning. With the loss of my daughter, and now my dad, two people that each held a literal piece of my heart, I have come to live out the meaning of grief.

Grief can hit you out of nowhere. You can be perfectly content one second, and the next thing you know, it hits. And it hits hard. It may last a minute, or it may last hours. Grief knows no boundaries.

Once grief strikes, it comes at you like a crashing wave in the ocean. Literally. Picture yourself in the ocean. Some waves are small. Some waves are large. Some just pass by you without you even noticing, while others sweep you off your feet, sometimes crashing over your head just before your next breath. Those large, unexpected waves leave you gasping for air once you can get your feet back under you.

All of this applies to grief. A memory, a smell, material items, a song…all of these things are triggers for both large and small waves of grief. Sometimes when grief hits, it very briefly comes and goes. It catches you off guard, but before you know it, it’s gone. Other times, grief hits and it lingers. The tears flow freely down your face, literally drowning you in your very own sorrows. This type of grief leaves you gasping for air. You feel as if you will never be able to find the strength to take that next breath, and then you do.

Grief is weird. Often times, grief is unwelcome in my life. It’s scary and it’s physically and emotionally exhausting. However, sometimes I welcome it with open arms. It’s as if it is a connection to the ones I love, to the ones whom I have temporarily lost. It hurts so bad, but I grieve because my love for them runs deep. I grieve because I long to see, hear, feel, touch, hug and kiss them. I grieve because this new chapter of life without them is something I don’t want to enter into, but I have no choice.

Grief…something that once was not part of my life, will now forever be engrained in me until the glorious day that we all will be reunited before the presence of God.

 

One Year

I knew I wanted to write a blog on the year anniversary that my daughter went to meet Jesus, but I imagined doing it on the actual date — February 7th. However, the longer I’ve been awake this morning, the more today seems like the actual anniversary. I mean it was on a Saturday, and the day started lazily on the couch just hanging out with my sweet girl, sort of like I am today with Owen. My dad (who I miss dearly) came by and brought me lunch and did a few handyman things for me as he always did. It was just the start to your typical weekend. Here she is cuddling with her stuffed animals that day.

Kyle and I were pretty excited though, because on this day he was planning on taking Mabry Kate on her first date — to a father/daughter Valentine’s Day dance. He spent his whole morning running around picking out her outfit, and even ordering her her very own corsage. While Kyle was out and about, I enjoyed a two hour nap cuddling with her. We then got up and I gave her a bath and painted her sweet little fingernails for the first time. I almost forgot take a picture, but then I remembered, and snapped the last picture there is of her.

It wasn’t 15 minutes later that my worst nightmare began to unfold. Every parent’s worst nightmare.

I cannot wrap my mind around the strange and unbelievable fact that it has been a year since I held her, cared for her, cuddled with her, kissed her, touched her, dressed her, just plain mothered her. One year. That’s even longer than the amount of time we had her here on earth. There are no words. The only words I can muster out that bring any sort of comfort is that I’m one year closer to eternity with our heavenly father, where she is now. I just talked to one of my co-workers the other day, who just so happens to be one of my best friends, about a verse in “Amazing Grace” that also brings comfort:

When we’ve been there 10,000 years, bright shining as the sun,

We’ve no less days to sing God’s praise than when we first begun.

That is amazing to me. It’s sometimes hard for my mind to comprehend, but it’s comforting.

You see, as hard as this day was and is even a year later and will always be, I believe Kyle and I were getting her ready for the ultimate father/daughter dance. I was so blessed and privileged to dress her in her finest clothes; to make sure she looked amazingly beautiful, as she always did, as we handed her over to our heavenly father — the one who created this beautiful hero. And what many people don’t know, is that Kyle did get to dance with her. He didn’t dance with her in the ways he had hoped or the ways he had envisioned that day, but he danced with her in ways not many father’s will ever do. He danced with her as she took her last breath here on earth. He danced with her as her spirit, what truly makes her who she is, left her body and was united with her Maker and her Healer; like when a father walks his daughter down the aisle to her groom. That to me is the most beautiful picture I can make out of any of this.

Mabry, we struggle every single day to live life without your physical form here. We are constantly reminded of you every single day. There are no words that can explain the depth of our pain and our grief, but there are also no words that can express the immense amount of love we have for you. You will ALWAYS be a part of our lives. There will NEVER be a moment that we don’t think of you. I am so extremely proud of you — how hard you fought, how you saved your brother’s life, how you will save the lives of future babies born in Tennessee, how you strengthened my faith, your dad’s faith and the faith of so many others (some we don’t even know). You may not be here with us physically for the remainder of this life, but you are spiritually, and I constantly look for you. Thank you for always reminding me that you are. Until I get to see you again, I will devote my life to keeping your spirit alive in ways only God can. I love you more than I even understand and I miss you more than words can describe.

Love,

Mom