“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.

 

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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

A Reflection of My 20’s

IMG_2536So a couple days ago, I turned 30. I have been dreading it for a couple months now. I’m not really sure how I’m already to this point in my life. As a teen or even a newly turned 20 year old, most people picture themselves having it all together by the age of 30. You picture yourself with the ideal family, being financially stable and just all around successful. Now that I’m here, that’s laughable.

Now that I’m 30, I realize I don’t have it anymore together than when I was 20. I’m still me — an overanalyzer, messier than I would like, insecure about certain things and always looking for reassurance in many situations. One thing that has changed though, is my faith. I’ve always had faith in God, but the older I get, the deeper that faith runs.

I’m so thankful for my twenties and the spiritual growth that has taken place. This is one of the many reasons why I didn’t want to leave my twenties. I know it’s just a number, but Mabry Kate was physically with me in my twenties. I often find myself thinking about how sad it will be, or now is, to leave that decade because that’s when I had her and that’s when I was with her. But then I remember. I remember that my age is just a number, and regardless, she will be with me in my 30’s and beyond. She is with me always!

Through God’s works, she is the one responsible for growing my faith. And when Owen came along, he taught me to be faithful in a different way.

You see, when Mabry Kate was diagnosed, I had nothing else to cling to. The doctors couldn’t do anything, my family couldn’t do anything, my friends couldn’t do anything, and worst of all, I couldn’t do anything to help her. Only God. I placed every ounce of faith I had in God. I wanted so badly for Him to bless her and us with a miracle of earthly healing, but ultimately, I knew that she was in His hands, and there was no bigger comfort than that.

I recently went to Nashville with my best friend to hear a young preacher speak, Clayton Jennings. He is on fire for God! One thing that he kept saying that resonates with me personally is that only God can take an ugly situation and turn it into something beautiful.

Only God could take the evil and disgusting diagnosis of Krabbe Disease and turn it into a life saver for Mabry Kate’s brother, Owen. Only God could take Mabry Kate’s suffering and turn it into a life saver for future babies in Tennessee through the Mabry Kate Webb Act. Only God could take the seemingly broken life of a terminally ill child and turn it into an incredible blessing for me, my husband, my family, my friends and countless others who I have never even met. She never spoke a word, but through God, she grew my faith.

She taught me to be faithful through Owen’s transplant. Of course there were many scary times that caused me to worry and become anxious during the process, but deep down I knew that God had, and still has, this situation under control. No matter what was or is said by nurses or doctors, ultimately God has the last say. There were times that maybe I should have worried more, but I didn’t. I just had this deep flowing faith that kept my mind in check. God’s got this.

Owen is literally a living miracle. His DNA is embedded with a terminal illness. He should have shown significant regression by now, but instead has shown none.

And Mabry Kate is also a miracle, but in a different sense of the word. We may not have gotten the miracle we prayed for — complete healing on this earth, but God has healed her. And through her, He has healed Owen. And through her, He will heal future babies in Tennessee. And through her, He has healed the hearts of many and strengthened the faith of thousands, including me.

So, I will carry her with me into my thirties and beyond. She will always be in my heart until I can have her in my arms again. Age is just a number, but I’ll always be thankful for my twenties and the strengthened faith I received from it.

A Surreal Year

IMG_4869It’s hard to believe, but this time last year my husband and I had just received the most devastating news we could have ever imagined. Our brand new, beautiful baby girl had Krabbe Disease.

Some of you might remember this post I made on Facebook one year ago today:

“Well Cincinnati was able to give us the answers we have desperately been searching and waiting for, but they are devastating answers we could have never dreamt of. Our precious angel has krabbe disease. It’s a very rare genetic disease that usually takes the life of a child anywhere from 6 months to 2 years of age. Babies born with this show normal development for the first few months, and for some the first few years, followed by progressive loss of development. Our baby girl started losing these milestones at around 3 months of age. I feel so blessed and fortunate to have seen her beautiful smile complete with the most precious dimples, and feel the utmost happiness in my heart at the sight of it; however, my soul aches at the thought of not ever seeing it again during this life. Fortunately, as followers of Jesus, we have this thing called hope. I have hope for when Jesus calls her home, that I too will be called home one day, and we will meet again and she will be smiling at me as I run and scoop her up into my arms. I have hope that this life is far shorter than the eternity I get to spend with her in Heaven. And I have hope that she is going to be in a much better place than I could ever fathom giving her here on earth. She is truly a God given gift. She has taught me more than anyone else could have tried to teach me. I hope that she can give you hope through Jesus Christ for your eternal future. We thank you for your continued prayers. This is by far the hardest situation we have and will ever go through. Our hearts burst open with love for her, so much love that can’t be described. Please continue to pray. We are going to love on her as much as we possibly can. I do know that our God is a God of miracles, there is still hope for that. But no matter the outcome, she is our miracle, for she has our hearts and has already strengthened our faith. She is our heart.”

I just want to give you a little insight about this post and the terrible day that let up to it.

I remember coming home from work with Mabry Kate in a pretty good mood, after all it was Friday. I basically walked in the door telling Kyle some crazy story, probably about something that happened at school. As soon as I stopped talking, I watched as Kyle scooped Mabry Kate up into his arms and I could see tears in his eyes and a look of fear and disbelief in his eyes.

I knew we were waiting on results from a test that the doctors had done at Cincinnati Children’s Hospital, but I didn’t think they would come that fast. I had to ask him what was wrong several times before he could muster up enough strength to get the words out, and by the last time I had asked I was essentially in a panic and in tears.

It was then that I heard the word “Krabbe” for the first time and all I kept saying was, “What does that mean?!”

It was also then that I learned that her life expectancy was no longer than 2 years, and that she could go sooner. I also learned that the only treatment was a stem cell or bone marrow transplant, but that she was more than likely too far progressed for that option. I then had to begin to come to terms with the fact that there was nothing I could do but pray. There was nothing I could do to stop this nasty disease from taking over her life. I could not protect her from that, and as a mother, there is no way to describe how that feels. You’re supposed to be able to make your child feel better. You’re supposed to be able to protect them. But I could no longer do that.

There were so many emotions that overtook me that day as I collapsed to the floor in sheer devastation and a constant flow of tears. My heart was shattered. I was scared, in disbelief, worried, confused, devastated, and angry…so so angry. Why Mabry Kate? Why my beautiful girl? Why was she the 1 in 100,000?

But then I remembered reading the book of Job and how he always kept his faith in God through unimaginable circumstances. It was then that I decided no matter what was to come, I was putting my faith in God.

I remember sitting down to share the news with the Facebook world because so many people had been praying for Mabry Kate and us. I remember my initial post was going to be written out of anger. I was so mad. As a teacher, I have seen a handful of pretty unfortunate situations where parents neglect their perfectly healthy and capable children. They don’t take care of them, they don’t nurture them and they don’t show them the love and affection that they deserve. Those were all things Kyle and I were ready and willing to do. And if that was the case, why was Mabry Kate the one to have this disease? Why are we being denied a lifetime of memories and experiences that every loving parent longs for?

As I started to write the post, I stopped myself and began to pray. I asked God to tell the world what He wanted them to hear, not what I wanted them to hear. I didn’t want to be angry. I wanted to trust Him, and I still do. And from that prayer flowed the words that appeared in that post.

I love to look back and read it. It’s a message full of HOPE, not from me, but from God Himself. I read it from time to time to remind myself that God is in control of this situation and every situation, and that His plan is perfect.

And then I feel blessed. I feel so amazingly blessed to be mom to Mabry Kate and Owen. What a true honor it is. They both radiate God’s true wisdom. I know I say it time and time again, but they have taught me so much about life, and most importantly about God, faith and hope.

I hope as you have followed our journey through these rough waters in life, that you too have learned a thing or two about God and His love for you! I would have never chosen this path for my family, and though it’s a broken mess, it’s a beautifully broken mess. I can’t wait for the day that I get to see the big picture and God’s perfect plan revealed, because it will be then that eternity begins and all the brokenness becomes whole again.

Time Stands Still

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I can’t believe it’s September. I can’t believe all that has happened throughout the past year. I can’t believe we are without our daughter. I can’t believe how far our son has come. I seriously can’t believe it’s September.

Since February, I feel like time has stood still.

When Mabry Kate passed away, as I was drowning in my sorrows, I had so much trouble coming to terms with the fact that the world was still spinning, that people were still living and that life went on. My whole world stopped. I was and still am stuck in the past. Time stands still.

How can it be that we have not been able to hold, touch, kiss or even look at our daughter for 7 months? How can it be that our son is almost 6 months old and he has only been home for 4 days of that time? How can it be that we haven’t lived at home in 6 months? How can it be that I haven’t worked a day in more than 7 months? Time has stood still.

I struggle with it being September. I can’t wrap my head around the fact that the world spins madly on as we spend our lives, for the time being, waiting.

Waiting for Owen to be well enough to come home. Waiting to be able to move back to Tennessee. Waiting to live as much of a normal life as possible after all the brokenness we have experienced.

And even when this chapter of our lives ends here in North Carolina, my world will still stand still. I will still be waiting. Life will still go on, and what a blessing and a joy it will be to watch Owen grow and learn. But we as a family will always be waiting and longing for the day that we can see our hero again. Our sweet Mabry Kate.

In my heart and in my mind, time will always stand still.

The Joy in a Laugh

This past Monday, Kyle and I experienced something we haven’t yet experienced as parents — the laughter of our very own child.

  
For the first time, we heard Owen laugh! It brought an overwhelming sense of joy to our hearts and literal tears to our eyes. This is something we were never able to experience with Mabry Kate, and according to science, this is something we should have never been able to witness with Owen. Both of our children have one of the most aggressive and rapidly progressing forms of Krabbe.

But God trumps science. His plans are greater. Because of God, Owen’s laughter means so much more to me than just a happy and heartwarming noise. That noise is the sound of a miracle — a miracle granted by God. It’s the sound of life — a life saved by his sister.

When I hear this sound that is so full of life, I can’t help but be reminded of Mabry Kate and her life she gave for his. His laughter is so full of life for both himself and sweet Mabry Kate.

And from there, I am reminded of God. As He watches His son Jesus change the lives of others, I know He is constantly smiling and so proud of Him and His amazing works. Even though we can’t see Mabry Kate, we will always see her working through Owen, just as we can see Jesus work through His people.

It’s amazing how my perspective on life has changed through all of this. I am constantly looking for God working through certain situations. I am constantly looking for signs that He is there. He knows I need reassurance, and He never disappoints.

Before this experience, I thought I was in control of so many things, but through all of this, God has taught me that He is in control. If we make ourselves aware that God’s “got this,” we can rest in His infinite wisdom and just marvel as He works through us and through our lives.

He is ALWAYS there, we just have to open our eyes. I’m not perfect in this area. I still try to control situations, but through this, I have become so much more aware of God and His beautiful story He continues to write in our lives. I cannot wait to see the BIG picture.

Until then, I will soak up every single laugh Owen has to offer, and I will remember the life and the beauty that is contained within that joyful noise.

  

The Truth About MY Grief

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As another Mabry Monday approaches, I wanted to let as many people as possible know why I love these days!

It is quite evident that we love to talk about our son and the strides he has made with the updates we continue to share. There are so many generous and caring people out there that genuinely care and pray for Owen’s healing on a daily basis. For that, my husband and I could never express how grateful we are.

But one thing you might notice is that on Mondays I post to remember, honor and share our daughter, Mabry Kate, and her story. I love this day because, the truth is, I LOVE to talk about her, even though she is not physically with us as Owen is.

I feel one common misconception people have about someone going through the loss of a loved one, in particular a child, is that they’re better off not mentioning their name. I believe this is out of fear that they might rekindle some of the sadness and tears associated with that loss.

The truth about my grief is that, for me, it is quite the opposite. I could talk about Mabry Kate ALL. DAY. LONG. I will openly answer any questions you have about her and her life. I will reminisce with you about memories you share of her. I will listen as you explain how she has touched your life. I will look through pictures and talk about each particular day and moment with you. I will share her story over and over again until the day I die. After all, she is and will ALWAYS be my daughter.

Just as any other parent loves to talk about their child and their accomplishments, so do I. Please talk to me about mine. Mabry Kate was able to accomplish so much in her short time here. She touched numerous lives, taught valuable life lessons and will save life after life, including her little brother’s. That’s more than I’ll ever be able say about my accomplishments in life.

Don’t get me wrong, there are hard days. And sometimes it’s not a whole day that is hard, but maybe it’s a hard minute or hour. For me, (and I can only speak for myself) those moments usually come when I am alone. I don’t usually break down in front of people. When I talk about her to people, it’s in the same context as you would talk about your child to someone else.

She may not be visible here in the flesh, but she is in my heart. She is with me always. And as I have written in some of my previous posts, she is really great at reminding me of this when I tend to forget at my weakest moments.

She and her brother have made us so proud. We are so honored and humbled that God chose us to be the parents of such an amazing little girl and boy! They are two heroic fighters who carry with them wisdom well beyond their years. We envisioned raising and teaching them about life, when in fact, they have taught us.

So if you know me, the next time you see me, don’t be afraid to ask questions about her. Don’t be afraid to talk about her. If you don’t live near us and only follow our story from afar via some sort of social media, don’t be afraid to comment, ask questions or like our posts about her. What you have to say is therapeutic and essential for me as I deal with my grief on a daily basis, as my biggest fear is that she will be forgotten. Never by us, of course, but in general. It will be my life’s mission to make sure she is always remembered and that she continues to touch lives in so many ways.

Thank you for continuing to follow our journey. Thank you for your continued prayers and support. We have been blessed beyond measure through such a huge storm in our lives. Words will never express our gratefulness.