Its Monday again. Cold. Rainy. Wet. Monday.
Ash and I are doing laundry, staying inside all day, keeping warm and dry. She's laughing so hard and so loud it makes me laugh too. I'm not sure what has her so tickled, but it really doesn't take much these days. She loves to laugh. Her laughter is heard throughout the house. Last night as I stood visiting with Blake in his room he stopped mid sentence, listened, and said, "I love her" with a smile that spread across his face. Her laughter interrupts each and every conversation around here because we can't help but acknowledge how much we love hearing it. Allie spent one night in Ash's bed this weekend giggling and laughing with her into the early morning hours. Nothing more precious than stumbling upon one of my teenagers curled up next to my sweet Ashley in her tiny bed. I love that image! One I hope to never forget.
I've lost track of the number of Monday's we've been given since ex-plant, but I used to count each and every one realizing it was another one we were told we weren't supposed to have. Now I just take a moment to look across the family room at my big girl and then smile realizing we are sharing yet another one. Its amazing when I stop and think about it.
I spend most of life ignoring what is to come and absorbing what is now. Every once in a while as I'm dressing or bathing my sweet girl I stop and stare at the coiled up white piece of plastic that is taped onto her chest and I feel the breath drain out of me. Last night as I bathed her it happened. Its the most important thing we have in our home. Her lifeline. Knowing that if its functionality is lost, or it becomes broken or pulled that we will be forced to walk the path that leads to the end of life as we know it. Such a responsibility. Such a frightening thought. No wonder I determine not to think about it too often. I can't imagine life any different than it is today. I just can't.
Most days I spend being amazed at how normal it all seems. Life after ex-plant, with her last central line in place, keeping her alive. If you don't stare at it, then you really can just go on living as if all is well. She's so happy its hard to imagine her any other way. The haunting memories of days past fade away with the joy filled moments of days present. She spends her time playing. Not worried about a thing. Just being little without a care in her world. She is unaware of her own struggle to stay alive and even though I would love for her to be "normal" I'm grateful beyond words that she has no understanding of transplant, and infection, and death. She just doesn't get it. What mercy! Humbles me.
Our home is busy as always with two very active teenagers and our little Ashley Kate. We run from this practice to that, two to three games a week, tournaments on the weekends, and all the in between. We spend our days watching our children grow and mature in their individual talents and I am so aware how quickly time is passing. I stay determined to take it all in and not miss a moment. I love the rare occasion when we all have no where to go or nothing to do, but love even more watching who they have become as they follow after their dreams.
Life is never going to be problem free, and its far from perfect, but it is precious. That I have learned. May I never forget.