Ashley's Story

She will leave fingerprints all over your heart


At a glance

I sat early this morning trying to organize my thoughts and figure out which direction I was headed today and realized how blessed I am to be here during this time. The outcome we were left with this summer is not what we had prayed for and the upcoming destination is one we had never hoped to visit again, but this in between is nothing short of miraculous. God is blessing me with some of the busiest, most enjoyable times here in our home with the kids.

I'm going to run through this week at a glance and share with you just how much I am being blessed to be a part of. Coming home was the best decision we ever made. Not just for Ashley Kate, but also for Blake and Allie.

Saturday - Two baseball games, Dallas

Sunday - Two baseball games, Dallas - Club Volleyball try out, Longview

Monday - Two basketball practices

Tuesday - One basketball practice - One Soccer practice

Wednesday - Two basketball practices

Thursday - One school play - One basketball practice - One basketball game- Nacogdoches

Friday - One basketball game- Lufkin - Travel to Dallas

Saturday - Three soccer games- Dallas

Sunday - Club Volleyball Longview

I love every single moment of this crazy life and crazy schedule. LOVE IT. Add taking care of Ashley Kate to the mix and our life is abundantly blessed. I am exhausted at the end of it all, but I am happy. My kids are growing so fast and I enjoy each one of them and their talents and all that they offer to our family so very much. I spend much of my day on the phone working on Omegavin, Insurance, and transplant related stuff. The rest of my days is spent on the floor reading, playing, and cuddling Ashley Kate. There are lots of dressing changes, IV lines, pumps, and bag drainings going on too. Dave and I don't find lots of time to spend together, but we are blessed to spend most of his lunch hours with each other. On occasion we go to dinner and talk about the "bigger" issues that we choose not to discuss at home around our kids.

This week we were blessed by one of our patients who gifted us with a swivel car seat. This little gift is going to make loading Ash in and out of the car much, much easier on all of us. The physical strain of lifting and carrying Ash is felt by us all. I'm almost to the point of having to lift her into her wheelchair, push her out to the car in it, then lift her into the car. Not there yet, but considering if it would make life easier on us both.

Ashley Kate is happy most days. She has some bad days thrown in and there are always medical issues to be dealt with, but she doesn't know life should be any different than it is. She tires easily and I know that is just part of the livers struggle. The most important thing is that she is home. She knows she is and it makes all the difference in the world. The life in her eyes shines when she is here compared to the way they look when she is in the hospital. I am so grateful to have this time with her. So grateful.

At a glance I would have to say that our life is blessed. It really is. I try so very hard not to think about the future. It will be here sooner than I would like so I'm trying not to concentrate on what it holds for us. I'm just enjoying the time we've been given. To top it all off its Christmas and that makes me smile all the more!


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