Ashley's Story

She will leave fingerprints all over your heart



It happens to the best of us. I am officially exhausted with these stupid line infections. I don't know what it is about having to add in the administering of IV medications to her other cares, but they always seem to put me over the top. I'm just tired. Its not like I get to work a 12 hour shift and then go home for a full 6 or 8 hours of sleep. I'm on 24 hours a day when Ash is needing IV meds and it wears me out.

So we have 4 IV pumps running, vanc medication balls, a drain bag on her g-tube, an ostomy, line dressings, constant vomiting and an endless pile of laundry from the leaks, the bile, and the vomit.

Anytime I get this tired the emotional strain of our life seems to flood over me and the tears and desperation and helplessness seem to envelope me. I can't stop any of this. I can't change this. I can't keep her well. I can't spare her transplant. I can't do anything about the many things that are going wrong in her body.

All I can do is take care of my baby to the best of my ability, hold her close, rock her, wipe her tears, sing her favorite songs, clean her up, pray for her, and love on her. This precious, precious girl of mine is so worth the sleepless nights and the piles and piles of bile stained laundry. As the tears roll down both of our cheeks I remind myself that many of my dear friends would trade places with me in a moment to have their babies back in their arms. I know they would give anything to have one more night to administer IV meds, hang TPN, change bedding, wipe tears, and cuddle close their most precious child. In my exhaustion I find perspective. Thank you Lord for bringing it all into focus even when it seems to overwhelm me.

There is nothing I would rather be doing than parenting my Ashley. Along with that parenting comes some long and trying days, and some sleepless nights. On the flip side it comes with a thousand smiles, joy so radiant you can feel it, and giggles galore.

In just an hour and half I get to lay down for a few hours and I can't wait. I think she's going to have a better night tonight than she did last night. It sounds like she is resting better and I'm hoping for less vomiting to go along with that. She is currently fever free this hour and that seems to make all the difference in her comfort level. Praising God for that.

Goodnight my friends.


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