Ashley's Story

She will leave fingerprints all over your heart



Hard to believe I've shared my hopes, my hurts, my heart, and my home that many times in this forum. Its been 5 years of blogging the good and the bad. The life changing and the mundane.

Tonight I'm sitting in the family room alone. All of the kids are fast asleep. Dave just went to bed himself. The house is quiet. Peaceful. Smells delicious. Feels safe. Just the way I like for it to be. Not sure why I'm sitting here when I too should go lie down. There are just days when I'm very aware of where we are on this journey and my heart aches and my heart rejoices in this big mangled mess of emotion.

Things are so good right now and yet nothing has changed. The same unsure future, short expectancy, and awful medical decisions still loom over us. They still hover around in my head and sting my heart at the most unsuspected times. I have no idea what we are doing. Other than living one day at a time. I stay busy with Ash all through my days and my evenings are spent running here and there with Blake and Allie playing one sport or another. Allie is currently playing volleyball, basketball,and soccer as well as cheering. Blake is playing baseball(of course) and basketball. Just this week we've had a volleyball game, private basketball lessons(I love coaching and this gives me the opportunity to do it in small enough time slots to make it doable, plus Blake and Allie get more time on the court while I'm there), the start of the school basketball season, a club volleyball meeting, a canceled cheer appearance, a scheduled club soccer practice and baseball practice for tomorrow, but only after basketball practice is over, and two upcoming baseball games Sunday afternoon. Some times I get confused as to where exactly it is I am headed as I pull out of the driveway, and yet I LOVE being here for every single minute of all this. The kids stay busy and active and too exhausted to get into any trouble and I'm convinced this is why they are such good kids. Discipline breeds responsibility. Athletics gives them that. I'm so grateful for their able bodies. So grateful to be in this place with them.

I'm working on lots of things for Ash this week. Looking to get scripts written for her riding lessons back out at Windridge. We've never ridden with a central line, but I know its something she loves and enjoys and I'm developing a plan to protect that precious line from any contact with the horse. Also looking into getting scripts written for home nursing(although we still don't have any prospects) and for a private speech therapist. I don't want to schedule her days to the extent they once were before her explant. I don't believe she is up to that much activity each week, but I do think she would enjoy and benefit from some. Her liver looks pretty angry this week on her labs and I'm not so sure why. I've been suspicious of something the last week or so and especially today, but nothing has declared itself other than some high liver enzymes and an elevated bili. The liver in connection with a functioning central line are the keys to keeping her home and away from transplant. As long as her liver can still do its job and her line is in place and working then we are good to continue life as if we haven't a care in the world. She's not sickly this week, just different. More lethargic, sleeping longer, a low grade temp but nothing too alarming. She's just a little less active than I like for her to be and in combination with her liver numbers it has me scratching my head and saying, "makes sense, but not sure what's causing it".

I don't know, its hopefully nothing. I like having nothing going on with her other than the obvious lack of a vital organ:)

Anyway, the holiday decorations are soooo close to being complete and each day I love the house more and more and more. Its very peaceful inside these walls and peace in the midst of this unsure world is a treasure. I only have a few more things to finish and we are set to do nothing except sit back and enjoy it all. I'm counting down the days till November when the joy of the holiday season is in full swing. I totally hate Halloween and don't acknowledge it in any way, shape, or form. Its just not something we choose to celebrate. So...less than one week until it passes and then nothing but the joy of the holidays will surround us.

Hoping your all well and that your homes are filled with peace this evening. Goodnight.


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