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

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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.

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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.

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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

 

 

 

 

 

 

 

Why New Years Will Be Harder Than Christmas (For Me)

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The loss of a child is one of the most painful things anyone can go through. And whether you’ve lost a child, a parent, a friend, a grandparent or whoever, the holidays are a time in which emotions tend to run wild. The holidays are overflowing with traditions that undeniably bring about memories with our loved ones who have gone before us.

Christmas especially tends to be hard for many people, and understandably so. I get it. This year will be hard for me. Mabry is not here with us as she was last year. But this year will also be joyous. Owen is here with us. There isn’t a word to describe how this Christmas will feel for us. Our situation is the definition of unique. And while Christmas will be difficult to navigate through, I think I will make it through these upcoming days with a little more ease than I will New Years…and here’s why.

The Christmas story is one of HOPE. Jesus was born of a virgin, lived a sinless, perfect life, died on a cross for our sins and rose from the dead — all to save us, the people of THIS world — YOU and me, from our own sins. That means, as believers and followers of Christ, we get eternal life — with Jesus, and with our loved ones. It all started with his birthday — Christmas. Therefore, Christmas, to me, provides the reassurance and the hope that I need to get me by each day. It’s the reassurance and hope that I will see Mabry Kate again. It’s the reassurance and hope that Kyle, Mabry Kate, Owen and myself will unite as a family, complete in Christ. How amazing is that?

But New Years. Ugh. I don’t even want to think about it. This year, 2015, will be the last year that Mabry will have physically lived in. It will forever be the one and only year that we had the pleasure of holding both of our precious babies in. Though full of the absolutely most frustrating, scary, devastating, heartbreaking times of our lives, 2015 has also been full of some of the most joyous, loving, heartfelt, cherished and amazingly beautiful times of our lives.

Most people look forward to a new year as a time for new beginnings, new commitments and new accomplishments. This year I’m holding onto the previous year with every fiber of my being. I don’t want to let it go. I don’t want to move on, but I don’t have a choice. It will personally be a huge struggle. In a matter of about five weeks after 2016 arrives, it will be a year ago that I last saw and held my daughter. Our verbiage will then go from “months ago” to “years ago.” How can it already be that long since she was here before me?

While I’m sure 2016 will bring with it some incredible times, one thing it will not bring with it is Mabry’s physical presence. I’m certain 2016 will be full of her spirit and love living on through her brother and us who remember and love her on a daily basis, but it will still be rough not holding her in my arms. I will do my best to focus my thoughts and my attention on the fact that with a new year, we are one year closer to her, to heaven, to Jesus…and to being together as a complete family.

“Normal” Will Never Be

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Throughout this entire journey, I have kept my eyes on the desired end result for Owen — a successful transplant, no complications and no Krabbe. Ever. So that we could be a “normal” family. In my mind, normal included living in a home and not in a hospital, having friends and family minutes away rather than hours away, having and raising a healthy child, going to work on a daily basis, among many other things.

For some reason it just now REALLY dawned on me, 10 months to the day since the day we lost Mabry Kate and nearly 8 months since Owen’s transplant, that we will never be what I once thought was “normal” again. I mean, almost immediately after losing her, we had to go fight for Owen’s life in North Carolina. That’s where all of our time and energy went to for the next 8 months. There was no time to mourn and think about “normal” life.

We aren’t your typical, picture perfect family. We are broken — without Mabry, grief stricken, and parents to a transplant baby who cannot (for the time being) be in public places. But we are blessed — to have known Mabry and to have the honor of being her parents, to own this grief that comes from the depths of an indescribable, unconditional love like no other and to be the parents of and witness the miracle of Owen’s amazing life saved by Mabry.

But we will never return to “normal.” It hit me as I went back to work last Monday for the first time since Mabry passed away 10 months ago. A simple drive to drop Owen off and then on to work is absolutely devastating. It’s the same path I traveled with Mabry every morning. That was my “normal.” But now she’s not physically here. And I’m so glad Owen is, but why can they not both be here? Why can we not be normal, typical parents raising a healthy daughter and son side by side?

And as I entered into the workplace, I could and still can sense the love and compassion the amazing people I work with have for the path that I have traveled with my family for the past year and half, but I can also sense their uncertainty of how to approach me or what to say. And not just at work, it’s anywhere we go. At work is just when it hit me like a ton of bricks. I’m sure it makes them uncomfortable and stretches them to the ends of their comfort zone, so reverting back to a normal conversation like those of the times before everything happened is typically what happens. Realistically, I get it. How else are they supposed to approach me? But inwardly, despite what I look like on the outside, I hurt. A lot. I’m not who I was before. I’m not “normal.” I’ve changed. Half of me, half of my heart, half of my soul, half of everything I am flew to heaven the day my baby passed away.

Contrary to what you may see from me on the outside, everyday it hurts on the inside. Every. Single. Day. Most days have slowly become manageable, but some are unbearable. The rest of my life will never be the same. My new “normal” will be the constant struggle with daily pain, grasping onto the memories that haven’t yet (and hopefully never will) slip my mind, trying to explain the unexplainable and constantly wondering what life would have been like with her here. What would she look like? What would her interests be? What would her personality be like? What would her voice sound like? What would it feel like to hold her hand? To hug and kiss her and have her do it back? To hear her say she loves me? To fix her hair? To comfort her when she’s down? To laugh with her when something’s funny? To have a mommy/daughter day? And the list goes on.

So far, from what I’ve experienced, the pain never goes away. From what I’ve read, people confirm that. And honestly, I don’t see how it could ever go away. Bereaved parents are, often times, quite amazing at masking their true emotions in order to fit into everyone else’s “normal” around them. And unfortunately, that’s really for the benefit of those around them; to keep them from feeling uncomfortable. We are good at trying to normalize our everyday lives regardless of the pain that is constantly on the brink of escaping our broken hearts. And I get it. It’s hard to comfort a pain this deep. Only God, when we allow Him, can provide the precise comfort a bereaved parent is in need of. But despite that fact, I truly appreciate the love and comfort that the people surrounding us constantly radiate day in and day out. It provides a different kind of comfort that is most certainly needed in our lives as well.

“Normal” will never be again. That’s my new realization. Everyday will always be a struggle whether I wear my emotions that day or not. And as much as it hurts, I’m okay with it (mostly because I have no choice but to be). This is the path God has chosen for our family. Mabry’s purpose was and still is so much larger than comprehension, and I will devote my life to keeping her spirit alive and to sharing the love of Jesus through the selfless life she lived. And Owen — that boy is the definition of a true warrior! I know God has something BIG planned for his life too! This is my life’s purpose — to show that God heals, that God is in control, that through God there is hope and that love wins every time. Who knew God could send a baby to teach me those things? This is my new normal.

 

A Letter of Thanks to YOU

Dear Family and Friends of the Team MKO Community and Beyond:

With Owen’s official homecoming in our very near future (like within the next week), it’s easy to reflect back on what has lead us to where we are. A huge part of that is YOU! This letter of thanks is extremely long overdue and not nearly enough for all the love, prayers and support we have received throughout the past year. It all started while we were trying to get a diagnosis for our sweet Mabry Kate. It continued to multiply once we did get a diagnosis and has continued into our lives since finding out about Owen.

In the beginning, we were able to find time to write a few letters of thanks, but as more and more was put on our plate and more and more love and support continued, it caught up to us. We lost track, in particularly, at beginning of February when we lost Mabry Kate and into March with Owen’s birth and transplant.

So with this being the beginning of November, a month notorious for giving thanks (even though we should all be thankful year round), we want to thank each and every one of you. It does not matter if you prayed a simple prayer or donated monetarily, for each of you we are equally grateful. No amount of words or actions we could do would ever repay every single one of you for your sincere generosity.

So thank you for your love and prayers. Thank you for your encouragement and positive thoughts. Thank you for the dinners that have been made and the gift cards that have been given. Thank you for the gifts from the heart like letters, poems, drawings and paintings. Thank you for the necessitates we have been given from paper products to cleaning supplies. Thank you for mowing our yard and festively decorating the front of our home. Thank you for doing our laundry and cleaning our house. Thank you sharing our story and spreading awareness. Thank you to the many basketball, volleyball, soccer, softball, football and various other sports teams in our community and beyond who wore blue, spread awareness, showed support and raised money for our family. Thank you to the amazing people that have temporarily filled roles that I cannot for the moment, such as teacher and coach. Thank you for the unfathomable amount of fundraisers that were and continue to be put on in honor of our sweet babies. Thank you to the businesses who have given a portion of their profits to our family. Thank you to those who visited Mabry Kate and our family at home just to bring comfort. Thank you for showing your love and support at her funeral and her graveside. Thank you for our going away party. Thank you for visiting Owen at Duke. Thank you for sending donations, letters, cards and gifts to Duke. Thank you to all the nurses, therapists and doctors who cared for our children tirelessly and those who have helped to save the beautiful life of Owen. Thank you to those that have helped us advocate for expanded newborn screening in Tennessee. The list goes on and on. We know we have left things out because we have been beyond blessed with an overflowing amount of love and support. But for each of you, we give our most heartfelt thanks. Thank you from the bottom of our hearts.

The prayers, love and support continue every single day. We are aware. We see it. We feel it. Sometimes it’s hard to comprehend because it is so abundant. Only God can take an ugly situation and turn it into a blessing. Through the suffering of both of our children, he has shown us His love through all of you. And for that we are blessed. Thank you. May God rain down His beautiful blessings in your life as He has in ours.

We love all of you!

With Love,

Kyle, Christin, Mabry Kate and Owen