Ellie Kate

Wednesday, May 1, 2013

I grew up attending a decent sized Methodist church with my mom and my sister. I had a Precious Moments bible that my dad and my ex-step mom gave me that I liked to highlight verses in. (And no that wasn't a typo, I actually have a few ex-step moms.)

We attended church regularly. We sang the hymns from the hymnal found in the back of every pew and listened to light hearted messages given by our pastor.

There was always a children's time at the altar before children's church began. And I distinctly remember the carpet being forest green throughout the entire sanctuary. There wasn't a Sunday that the organ didn't play or that we didn't recite the Lord's prayer.

I even went through confirmation as a 5th grader where I went to a 2-day camp with all the other 5th graders with the grand finale of the event being the 8 of us standing at the front of the congregation Sunday morning to be sprinkled with water, take our first communion and be welcomed into the family of God.

At least that's how I remember it.

My knowledge of the bible was minimal, and my prayer life was non-existent unless I was praying for the Lord to magically get my parents back together.

And so was life. I grew up in a church going through the motions ever Sunday, but I had no idea who Jesus or the Holy Spirit really was. You could say we had not been properly introduced yet.

My closest encounter to the Holy Spirit was in the middle of a football field at an FCA rally where I raised my hand when someone with a microphone asked who wanted to accept Jesus as their personal savior. I'll admit that I was confused at that moment because I thought that was what I had done years earlier during my 5th grade confirmation. But it sure didn't feel like this.

I felt like I needed this man desperately. I needed Him to be in charge of my life. Not me.

But then, being the coward I am, I didn't walk to the front of field and pick up my free bible with everyone else who raised their hand. I was embarrassed. I thought that accepting Jesus Christ as my personal savior was something I should have done a long time ago, but I never really had.

Fast forward a good 10 years, and my life has been drastically changed by allowing Christ to come into it. There was no immediate change for me. I continued to make poor choices after that day on the football field, but there was something new inside me that often whispered to me that maybe I wasn't always doing the right things.

My relationship with Christ would be a complicated one. I would throughly ignore Him and the Holy Spirit (that still, strong voice that I often heard whisper to me) for a long time. And then in an act of repentance, I would search Him out again and attempt to do the right thing and "be a better person." But I just could never get a handle on the whole God thing.

When I was 26 years old, I would meet a little girl that would completely turn my world upside down. She would change the way I thought about God and life and heaven.

She was only 4 years old. A little girl who would never speak a word, but would change my life completely.

Her name is Ellie Kate. And if you never had the chance to meet her, I'd like to ask you to take a few minutes to let me tell you about a life well lived.

Elizabeth Kathleen McLaughlin went to meet Jesus on December 23, 2012. She was a 7 year old miracle.

In all honesty, I have tried to write this for an incredibly long time and simply haven't been able to finish. But tomorrow is a very special day. It's NKH awareness day, and I know Ellie would have wanted you to know about NKH and about how hard she fought to beat it.

This is my Ellie story.

Our lives intertwined through the beautiful picture of God's grace. He knew I needed a reality check, and it came in the form of a little girl who would steal away my heart the moment I laid eyes on her.

Ellie Kate's momma and I met through a Scentsy donation to a project she was working on that involved taking Care Baskets to families in the hospital with children who had rare, serious, or undiagnosed conditions. They are simply baskets of love full of comfort care products....toys for the kids, Scentsy for the parents, the essentials like shampoo and conditioner, lotion and a toothbrush.

I made a donation and met Ryan Elizabeth McLaughlin for the first time and could not stop thinking about her and her daughter Ellie Kate.

Ellie Kate suffered from an extremely rare condition called NKH or Nonketotic hyperglycinemia. NKH is a rare genetic disorder that affects 1 child in every 60,000 born. Children with this condition have a problem breaking down the amino acid glycine. This is caused by a defect in the genetic code for the machinery that is responsible for the glycine breakdown (called glycine cleavage enzyme). Amino acids are natural components of our body. Because glycine is not broken down, it accumulates in the body. Glycine is an important molecule in the brain where it has various functions such as transmitting signals from one brain cell to another. Excessive glycine disrupts the function of the brain. 

For the record, I am the person for never watches the news or sad movies. I like to live in my own little bubble where things hardly ever go wrong. I liked my bubble and I wanted to stay there, but the Lord had very different plans for me.

I get overwhelmed with emotion even thinking about how he slowly wrapped us up in the lives of the McLaughlins.

I couldn't stop thinking about what Ryan's life must be like. How do you even live knowing that you will out live your baby girl? How do you function in and out of the hospital constantly, never knowing what tomorrow will bring?

And I got really really mad.

I started questioning everything I knew about God.

Why would a good God allow this to happen? Why would He let Ellie and her family suffer so much?

No matter how much I wanted to escape back into my world where things were fine and babies were healthy, I couldn't stop thinking about that beautiful little girl.

And then, I got to meet Ellie Kate. And I have never been the same since that day.

I wish you could meet her. Oh, I wish you could meet her! To say that she was beautiful would be an understatement. She was not only beautiful, she was wonderfully and perfectly made. Knit in her mother's womb by her creator.

There were no flaws. There was no mistake.

No, her earthly body never worked the way it was supposed to, but she didn't even need it. She didn't need to speak or walk or sing (even though she was making serious headway on the walking!). She simply had to be exactly who she was to change me.

Anointed is the best word that I can think of to describe Ellie. Placed here on this earth to do the will of her Father and change countless people through her life.

You see, I wanted to know why He would let a little girl suffer the way He did.

I wanted to know why He would let a wonderful family suffer the way they did.

I wanted to know why a good God would let such a terrible thing happen. It wasn't fair. It still isn't fair.

And in all my anger and frustration at this God that I thought I knew and understood, I began to search out the answers in His word and through sermons online and in prayer.

 And I learned that her life was for a great and Holy purpose.

I began to understand the love of a Father who knows so much more than we do. His plan is so much bigger than anything we can even imagine in our minds.

I began to see that I would never be able to explain it all in worldly terms, but I would fall more and more in love with a God I began to trust. He knows what is best for me always.

Ellie was what it would take for me to seek him out. He had been seeking after me for a long time, but He knew it would have to be me going all in to make our relationship real.

I believe with everything in me, that the Lord could have healed Ellie while she was here on earth. A miracle. lt would have been an absolute miracle.

But it wasn't a miracle that made me believe. I found Him in the eyes of a little girl with the most beautiful and ornery smile. She was ornery. She loved to rough house. She has 2 brothers, Conner and Henry who loved to wrestle with Ellie.

She was a hopper. Going from room to room hopping on her knees. Always following her momma around as she made the rounds.

And as I think about Ellie in this moment there is the biggest smile on my face. Tears running from eyes, but a smile. Because she was simply joy. Pure and simple, gut-grabbing JOY.

And I miss her. I miss the angel that we only got to have here for a breath....a moment. Not nearly long enough.

She never said a single word to me, but she taught me more about the love of our creator....about his faithfulness and truth.....about his bigger plan than any words ever could.

I could never wrap my mind around heaven before Ellie. It actually scared me. I know that sounds ridiculous, but it did. I can't wrap my head around what eternity is, and that scares me. Because I can't imagine it, it scares me.

But now, I see her there. She was there the moment she took her last breath. I know that she heard the words "well done my good and faithful servant" because she was. She was a servant sent here to change sinners like me. It's not fair, but it's so much bigger than the small picture we see here on earth.

I see her dancing, playing, singing, running. She is perfect now, and the hardest part about it is that one day, I will be too because of her.

Oh Ellie, I wish I could tell you what you've done. I wish I could tell you about the love and passion and desire you have created in my heart and in my soul. One day, my love, I will see you again as we stand side by side worshiping Jesus. I love you beautiful girl. Thank you for changing so many of us. There are so many people who love Jesus more because of you.

Ryan and Mike, thank you for sharing your beautiful daughter with the world.

Conner and Henry, thank you for letting us love your sweet sister.

And sweet Lucy Belle, your fight is not over, my love. You bring joy and light to your family and countless others. Keep fighting sweet baby girl.

Please help to spread the word about NKH:
To learn more about NKH or to donate money to go directly towards research please visit the NKH Crusaders website or like the Crusaders page on Facebook.

To see the NKH Crusaders, watch this video in memory of and honoring some of NKH's strongest fighters.

1 comment:

  1. I was so proud to make this video. I hope to be honored to make more in the future. Onr eay I hope I'll be able to make the best one - the one that announces to the world that we've found a cure.


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