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.