Ashley's Story

She will leave fingerprints all over your heart


I Want to be them?

A late night discussion last week with a nurse practitioner as we stood by Ashley Kate's bed in the dark and listened to her struggle ended with me stating," I want to be "them". I want Ash to get to be "that" kid."

I was sharing with her that I didn't know how to take better care of our Ashley. I was doing everything I knew how to do. What keeps going wrong? Why are we back here again and again and again? I have friends, transplant family friends, several friends, who never have to come back. I don't understand.

She shared that it had nothing to do with the care Dave and I provide. It was nothing we were doing. Its just the way it works. Some kids have an easier time with accepting their transplants then others and there are no reasons why. Kind of like the person who never abused drugs, never used alcohol, never smoked, took care of themselves, worked out faithfully, and is diagnosed with lung cancer. They did nothing wrong. It just happened. Doesn't make sense.

"Its those kids that we don't even remember. The ones that come, get transplanted, and leave. When they do show up years later for some minor situation we all look at each other and try to figure out who they are."

That's when I said it. I said out loud what I had secretly been thinking for over 2 years.

"I want to be them. I want our Ashley to get to be that kid."

And then I thought. I've thought a lot about that night and that conversation, and I came to the conclusion that my statement is just not true. I really don't want for us to be them. If we were them we would have missed so much. Sure, we would have missed the bad stuff, but we would have missed some real blessings too. Blessing that the Father provided through these long, tough, hospital stays. Blessings that take my breath away and leave me speechless. I would have missed out.

I would have missed the appreciation that I have found for EVERYTHING in my life. From each breath my child breathes on her own to a pile of leaves scattered out my front door.

I would have missed the precious moments that I get to spend uninterrupted as I cuddle my child close to my chest in the late night hours. She has my full attention. There are no thoughts of what I have to get done or that I really need to lay her down so I can do this or that. I just sit and breathe her in. I examine each piece of her tiny face and I worship the God who created her. I couldn't give those times up for anything.

I would have missed the joy, the purest sense of joy that I feel when I look at the smile on her face as we walk into our little home on each return. That look that tells me she knows it ok and that no one will hurt her now that we are back. I will never forget the smile she wears on those days.

I would have missed the friendships. The truly amazing, caring friends that God has crossed my path with that all live in this town called Omaha, Nebraska, Women and girls alike who have impacted my heart with their visits, their prayers, their surprises, their willingness to sit next to me on the toughest of days. Strangers whom God turned into my sweetest friends. Women who love my daughter. Nurses who love my daughter.

I would have missed the kinship I feel each time I read through the comments of her journal. People from across this world that God has brought into our lives. People who encourage me with their willingness to pray day after day for my family. They not only pray for Ash and myself, but they lift up my husband, my son, my daughter. I wouldn't want to have missed out on this experience. The feeling of knowing when you have no words left to pray that there are homes across the land with lights on and people on their knees crying out on your behalf. It is humbling. It truly is.

I would have missed the appreciation I have, the deep appreciation I have for all God has given to us. It takes so little to make my eyes shine. A simple night in our home watching my children be themselves as they come home and relax after a long day at school. To see them laugh. To listen to them chatter about this and that. To be with them. Close enough to hold them and love on them each moment of the day.

I would have missed out on hearing the love in Dave's voice as he calls late into the night just to tell me how much her misses her and misses me. I would have missed the moments of silence as we linger as long as we can before hanging up even though there is nothing left to say. I would have missed the gift of knowing how truly solid he and I are. Our relationship can withstand anything and I have absolute and complete faith and trust in this man who is home caring our Blake and our Allie. I would have missed those hugs. The hugs that he gives me the moment he walks into her hospital room. The ones that make me feel as though he never wants to let go. Its in those moments that I am allowed to melt because he is back and I am no longer alone. I wouldn't have missed the way that feels for all of the world.

I would have missed watching God work in our family.

I would have missed out on His plan. Even though I don't understand I know that He has one and that eventually it will be for our good. For Ashely Kate's good and not her harm. He is working. Its just bigger than what I can see with my eyes.

If I were "them" and she were one of "those" kids then we wouldn't be us. Our journey wouldn't have been the same. It may have been void of all of these gifts and I would not be the mommy to her that He has made me. I would rather be who we are. Through the pain, the tears, the struggle, that lack of understanding, the fear, the everything. I still choose to be us because I know that in being us we only benefit from His bigger picture. I just believe that we do.

So no longer will I allow myself to look at "them" and wish. I am learning to be content with being us and in this moment I am doing my best to be content where He has us today. Although it is painful, it is going to be ok. I know it will be for our good.


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