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.IMG_2065


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.”


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.


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



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.