Monday, April 23, 2012

Gentle hands and dancing shoes

Magical moments.  The ones you hope you never forget.  The ones that become part of your being.  The ones that shape your future.  I want to feel them.  To savour them.  To experience them all over again!  How do you hold on to something intangible?  It's like trying to hold on to Piper right now.  I know I can't hold on to something that wasn't meant to be held, but rather meant to be experienced.  I can't possess these memories, as if they were something to be gathered and counted, but instead, I need to feel them.  To sit and let them flow through and over me.  Even if I can't remember one to the intimate detail I desire, I can revel in the feeling it created in the moment and still carries with it.  

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!


  1. thank-you once again for sharing this journey, and continuing to inspire. You are truly a woman of tremendous faith, and we love you!

  2. My sweet friend, I am at a loss for words. You are such an inspiration to me and to so many others I know. I have been praying for your sweet angel, and for your whole family. I pray God wraps His arms tight around each of you. Although I have not met Piper or Peyton, I have grown to love them both through your words. Thank you for sharing these precious moments. Love you much. Lindy Hinebauch

  3. Thank you for updating us and letting us share in these special moments. I am praying for you all. And for Peyton. What a tough road for him. I am happy that your family is there to hold you when you need to be held. Love you all.

  4. Beautiful words. I understand your feelings of peace and joy even as you are going through heartache. Your family and your words are touching people all over the country. I hope you can feel their love and prayers coming back to all of you. Love and Prayers, Beth Hinebauch

  5. Dear Kari, Thank you so much for sharing your experiences. I have loved on my children much more intensely recently due to your words because we do not know what tomorrow holds for us. I know that God is with you and He is wrapping His arms around all of you. I pray for your family daily and you are truly a wonderful example of faith in God. TereseaJones

  6. I can only imagnie how difficult sharing this is, I thank you for sharing all the same. You said you wanted Piper to touch people's lives, your words are making that happen.
    The prayers are flowing for your family. May God wrap you in His love. Your sweet baby has touched so many lives, the same as Drew.
    Lots of Love,
    Amy Rapp

  7. Oh, Kari. Witnessing God working so powerfully is so inspiring. Thank you for sharing, I know it can't be easy. Your sharing invites all of us in to see what God is doing, how he is working. I am thinking of you so much. <3<3<3

  8. There is no doubt in my mind that God walks with you all. You are on our minds and in our prayers.
    We love you,
    Mike and Michelle Muirhead

  9. Oh have made those memories of you gathering memories slip from my eyes and run down my cheeks again...and much love, and soooo much a need for God to surrounding me with his comfort and strength. Grandma Marnie

  10. Dear Kari,
    without one single doubt God's presence envelops your story. With grace, you are reflecting what I believe is the full meaning of Isaiah 61's message...where the Spirit gives gladness instead of mourning, and a mantle of praise instead of a spirit of fainting, so they will be called oaks of righteousness...
    My prayers for you and your family have been to experience the giving of comfort to your sweet Piper and Peyton, while feeling it as an extension of His comforting you.
    Continually praying for you all~

  11. Dear Kari,
    As I read your words, it is clear how you are comforting us during this time of wanting to comfort all of you. Your love flows through your words. God is working mightily in all of this through you and because of Piper. I see how God has had a purpose in Piper's life, yes all too brief in our sense of time, yet what a blessing she has been to so many. Praises to our wonderful heavenly Father who knows your pain...
    Our love, Dorinda and Mike

  12. We've been praying for you guys so often! I'm so glad that you're living so deeply during these moments with Piper! Following along in your journey is making me more aware of all of the normal little moments with my boys, too. It's been really good to slow down and just live in the moment. Thank you for sharing your journey with all of us, and for letting us pray with and for you, and be encouraged by the peace that God has for you, and for us! My 3 year old has been praying for Piper at the same time as we've been praying for my nieces, who's grandpa has recently passed. Watching him try to understand sorrow and Heaven out has been so amazing! He doesn't understand why there would be any reason for anyone to be sad if the one we love is with Jesus in Heaven. It's so beautiful and just makes so much sense with his 3yo eyes!
    Still praying for peace and so much wisdom!
    Carrie, Troy and 2 tiny boys =)

  13. Continuing to pray for Peyton, Piper, and both of you. My girls also painted their nails pink for Piper. You don't know us, but we know Nicole, and we think and pray for all of you often. xxx

  14. Kari- thank you so much for sharing your journey. Your words are amazing and moving. I am continually praying for you guys. May God hold your hearts as this journey continues.
    Tianay Chambers Carroll

  15. Kari,
    I have been following your beautiful words....I continue to pray for your adorable Piper and for your entire family. Your faith in God and his plan astounds me....but it doesn't surprise me.
    You and your family are in our thoughts and prayers....I dedicated my yoga practice to Piper on the Pink for Piper day and wore pink ;) (hot yoga...not pretty for pictures but I felt so proud and part of something amazing). Love you guys....
    Patti Zabot and family

  16. That is beautiful! We are praying for your family!!!

  17. Kari, your words are beautiful. God has given you many gifts, and I'm thankful that you are sharing them even during this precious time for your family.

  18. Kari, I just sat down and caught up on your last few posts... Thank you so much for sharing. You tell the stories and express yourself so well... It was both heart warming to hear what Peyton's school and teacher have been doing to support him, and heart breaking to read the story of Piper's diagnosis and the journey you and Jordan had to walk again. Your strength and endurance continues to amaze me! Love you guys and thinking of you often!

  19. Your words are so amazing and full I can't help but be touched to my very soul. We've never met but I have followed your story for several years. Grandpa Dennis is a coworker and grandma Marnie was a coworker many years ago. Dennis occasionally shares new pictures or memorable moments with me...there is no doubt how proud he is of his family. You are an amazing family and your love and strength are inspiring to so many. Thank you, Kari, for sharing so much of yourself and your struggles and triumphs. You truly are such an amazing mother and special person. My thoughts, prayers, and heart are with all of you. Aimee Bourque

  20. Simply amazing peace and understanding. Almost like this experience is a blessing! And you are truly blessed! Although our families do not cross paths as often as they used to, (with the exception of watching big brother Peyton play hockey a few weeks ago. I will cherish that brief time of holding Piper up to the rink glass, taking it all in!), be assured that we are all praying that this peace and understanding continues, as well as the gentleness of Gods' hands over beautiful Piper. My heart broke when at that tournament you revealed Piper's diagnosis.....yet I could see your peace with it, despite your sadness. Anyway, what am I doing?! You are the eliquent writer, not me! Please just know we continue to pray for you, and love your entire family!