Her hands have shaped my heart, the memories of her dainty fingers and their gentle touch will create cause to smile with love for a long time. We sat cuddling yesterday, relaxing in the moment when Piper shared her gentle touch with me. As her hand floated over her blanket, back and forth, she reached a little further, and finding my arm, her little hand glided gently back and forth over my hand. At that moment, my hand became one with hers, melted into her touch, absorbed by her magic, and my heart pulsed with love for her. I could not move, dared not move. I didn't want the spell to break, the moment to pass. Her touch in that moment filled my heart. I want to remember that moment, the gentleness and love of that touch.
Piper is slipping from us, a little at a time, but she is still so much here. It is strange to experience. She is a slip of the baby she once was as she can no longer tolerate food or fluids, but her personality is still poignantly intact! She sleeps a lot of the time and when she is awake, she is often a bit fussy but even in these awake moments she shows us she is still calling the shots. I smile thinking about it, about how her little right hand floats over her blanket, back and forth, gliding until it lights, feeling, and then gliding again as if it is bringing her some sweet comfort, all the while demanding to be above the blanket able to determine its own path. About how she fights to get her right foot uncovered if the blanket has covered it again. About how she moves away from our kisses to her head or face if they get too long or too whiskered. About how she pushes our hands off her body as she did so many days at home - don't restrict me, don't hold me back... she's been teaching us this lesson for a long time, preparing us for her future (I remember carrying her around the house one day when she abruptly tried to pull my hands away from around her, as if she thought she could float if I let go!). She is so strong, and amazingly independent, in spite of being so weak, so frail! She isn't fighting her body's weakness, rather she seems to have very little frustration at it's deterioration but her patience with it makes me long for her freedom from it. Not that I am wanting her to leave! But for her to be able to dance! To be happy! To laugh! To sing! Daughter of mine, don your dancing shoes and when you accept the invitation to dance, dance your heart out! Dance like you've never danced before, and know that I will be dreaming of you dancing in the presence of One that will love you with a love deeper and more pure than I can imagine.
We are so grateful for these quiet peaceful days. She has been relatively stable for over a week and a half now. She stopped having seizures for the most part. She is not sick to her stomach anymore, and most all else appears much the same. It seems as if her body functions are fine, but that her brain is slowly shutting things down. It is amazing how calming the affect of holding her is right now - she is exerting so little effort that her breathing is slow, shallow but so relaxed, her actions are slow and measured, gentle and intentional. I can't hold her without melting into her, relaxing into the peace of her presence. God must be near for this effect to be so calming. One more day in her company, one more opportunity to hold her, one more chance to kiss her cheeks - these things I will treasure.
God's presence here is evident - how can one face an experience like this and know so much peace? Or joy? Yes, there are tears and there are difficult questions, but my cup feels as if it is overflowing. Someone so much bigger is providing so much right now. I take comfort in the psalm, "In you my soul takes refuge. I will take refuge in the shadow of your wings, until the troubles pass." (Ps. 57:1), and in the verse, "The peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus." Phil 4:7
Please continue to pray for God's gentleness on our family, immediate and extended, and for wisdom in helping Peyton through this experience. Thank you!