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.

Advertisements

Time Stands Still

IMG_5003

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

IMG_4045

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.