Ashley's Story

She will leave fingerprints all over your heart


The mailbox

I remember this spring my sweet Ashley taking some of her very first independent steps with her walker down the walk to the box. It was such a long journey for her to get there. It really was. It had taken her years and years to learn to take those steps and in actual count it took 110 of them. Those 110 tiny steps equaled 10 of Blake's steps. It was at that moment I smiled and told myself "she is going to be fine". Little did I know that mere months later we would be starting over on the journey.

This time of year the mailbox is one of my favorite places to go each day. A little bitter sweet as I walk the walk instead of my sweet Ashley, but still I find happy, holiday messages inside.

Over the Thanksgiving holiday Dave was taking Ash for a walk in her chair along the cul-de-sac at my sisters and as they arrived near the neighbors mailbox Ash began to sign and point to open it up and check the mail. The neighbor was outside and came over to introduce himself. He met our sweet Ashley and as Dave explained to him her signs he invited her to open the box and check for his mail. The box was empty, but it was a very kind gesture and she enjoyed his "hospitality". The next day Ken, my sisters neighbor and Ashley Kate's new best friend, saw Dave outside and let him know that he and his wife had left some "mail" in their box just for Ashley. So sweet. So kind. That afternoon Dave loaded Ash into her chair and away they went to check the mail. Inside the box she discovered two holiday books and two small toys tucked away in that box just for her. An act of kindness we will never forget.

Yesterday I opened our mailbox and inside I found the envelope from UNMC detailing all of the times of each appointment and procedure of our trip. I can't really explain the feeling that came over me as I opened it and read through the list. I can admit that my mood changed. Instantly, and I struggled the rest of the day. It changed me. Not in a good way. I never got a handle on my emotions and they just led to more and more hurt and anger about the whole situation. There are things on that list that made my stomach hurt. Procedures that scare me to death and a few that will be impossible to accomplish. An abdominal ultrasound? really? Have they seen my daughters abdomen? There is not an inch that is NOT covered by a bag, a dressing, a strip of tape. Honestly they will have to remove her ostomy bag, not a good situation for the technician and her central line dressing, not a good situation for her line that should be kept sterile. How in the world do they plan on keeping the stool off the line when both of those dressings have to be removed to perform and abdominal ultrasound? The whole thought makes me cringe. Its going to get interesting. An echo? Really? What for? Its not as if her heart and its function has changed over the last 4 months? What are they looking for? I honestly think some of this is just "protocol" that is done just because its what they do for every candidate. Labs every morning at 7am? in the treatment center? I draw her labs and will be happy to do so from a sleeping baby girl and deliver the blood to the lab like I do every single week. I'm not waking her up, taking her into a waiting room full of sick people at that hour, and allow techs to touch and draw from her only working, very fragile, central line.

You should see the list of appointments they have scheduled for Dave and I. Did you know they put transplant parents through a psych eval? Yup, here we go again. Its hysterical as they sit there and question our ability to cope. I wonder how they would cope in our situation? I remember Dr. B. laughing as he told me in rounds last August, "good luck proving to us that you and your husband are fit parents" "that will be a tough one". I can't believe after working with this team for over 4 years that we have to go through this stuff again. Honestly, we will know first thing Tuesday morning what the rest of the week will go like. If my daughter comes out of procedure without a central line above her diaphragm then we will be leaving. Its that simple. Without that access there will be no need to have her endure the remainder or the week and Dave and I will be in no condition emotionally to pass that stupid psych evaluation. I couldn't hold myself together last night as I informed Dave of this. I cried, I yelled, I shook, I was a mess. REALLY? If the first item on the schedule doesn't go well then there is no need to stay. None.

How did my trip to the mailbox result in all of this? What happened to me? In all honestly I think the fear, the stress, the unknown of all that we have experienced the last few months came tumbling out of me. Everything that I do my best to hold inside came exploding out. I could not or did not handle the contents of that envelope well. I am not handling the knowledge of us leaving a week from tomorrow very well. I don't want to go. I don't want to do this. I don't understand what happened. I don't get it. Yet, here we are...again. Step one of a very, very long journey back to the place we hope to be. Home. For good? For awhile? Forever? I just don't know. I don't know how I'm going to pull myself together next week. I really don't. I am experiencing a lot of hurt, anger, and frustration that I have hidden for a long time. Its not good. Eventually I took that stack of papers and stuffed them back into that envelope. I'm not pulling them out again until after we have a successful line in place to take her to transplant with. If that doesn't happen then I don't need to look at the rest of it ever again. It will be over and my trips to the mailbox can't get happy again. At least for as long as God allows us to keep her.

I'm glad its Sunday. The mail doesn't run today. No trips down the walk wishing my Ashley were walking it with me or dreading envelopes from Nebraska. By Monday I hope to have myself back together and as I open the box I hope to find the "happys' of the season instead.


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