Ashley's Story

She will leave fingerprints all over your heart



I'm still here. Just processing a lot lately. Many, many topics come to mind that I could write about, but most days I find myself processing things in our world and trying to figure out if it will ever be any different.

Things like:

Junior sized diapers. There are no words to even describe how it felt the day they were delivered.

Ostomy bags. Daily. Sometimes multiple times a day. At this point I feel it would merely be a cosmetic procedure to have a take down done on Ashley Kate and that's not a good enough reason to take the risks that are associated with the operation. At least not in my mind. She's not aware that she's pottying differently than the normal four year old and so it doesn't bother her. She's not able to understand or comprehend potty training at this point in her life so the idea of her needing to be changed constantly at 40lbs doesn't appeal to me either. She doesn't walk or run and hasn't the ability to be in athletics so I'm thinking "is it worth it?" So like I said, I'm processing....ostomy bags...forever? I really don't know.j

Feeding pumps and mic-key buttons. Even after four years the sight of an opening in her abdomen gushing fluid brings me to my knees. It is not normal. It is not natural. It just isn't. She lost her button today and I had to replace it. I though to myself, "Is this forever? Will I always be "bothered" by the knowledge that she has a whole in her abdomen that shouldn't be there?" Just processing why I haven't been able to get over becoming dizzy as I replace that button. I have no idea how to teach Ashley to bite or chew. So far I've had no luck with therapists showing her how either. I wonder if she'll ever get off that feeding pump.

Lab draws. Really struggling with this one. No surprise there. The whole jab my kid in the arm with a needle has NEVER appealed to me. Something about those protective, momma bear instincts kicking in and making me want to inflict pain on the one sticking my baby. Processing the thought of this being her normal for her entire life. I wonder what happens if you just stop getting them drawn one day. I mean, can you ever just say "enough is enough" or is that not acceptable? Any transplant families out there who have gotten to the point that you no longer have to have those lab draws? or is it that just out of the question?

Silence. Hard to swallow as I process the silence. I find myself making conversation with Ash as she plays just to get away from the silence of her world. I talk to her as if she could open up and converse right back at any given moment. I want so desperately to hear what is on her mind. I just want to hear her say, "Mommy help me with this or please do that." She can sign it, she just can't say it.

Just a glimpse of what I'm working through at this moment as I process the thoughts that flood my heart and work my way through them. At the end of the day as I kiss her tiny forehead and tell her goodnight NONE of these things really matter. Just the smile on her face and the twinkle in her sleepy eyes. Diapers at 4 or 14? I'm just glad she's here. Ostomy bags and the daily mess? Just glad that she's here. Filling feeding bags all through the night and lugging that backpack every where we go? Again, I'm glad she's here. Lab draws? Small price to pay to have her with me. Right? The silence? Her eyes tell me all I ever need to hear. She's here, she's happy, she knows she's loved. Its all going to be ok.


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