Sunday, April 8, 2012

Another little treasure

I asked my sister-in-law Laura Staples to help me create a blog last fall because I wanted to document all my special moments with Piper. Of course, I also intended to include some with Peyton, but there was an urgency to capturing those with Piper. We knew, really from day one, that our time with Piper could be limited and we wanted to make the most of every single day. We realize that really applies to everyone we love, but we were poignantly aware of it with Piper.
Before Piper was born, Jordan and I prayed for another little treasure to love. Actually, backing up... we prayed that if we were to have more children God would make it evident to us and allow us to have a healthy child. We did not take this decision lightly. Each step was submitted in prayer and covered in trust. When we found out we were pregnant, we were elated, hopeful and yet aware that "our" plans for our future may not take us down the easy road. We also knew three very important things that ultimately helped us decide: 1) Everything about Drew: his life, his illness, his death and his current comfort changed us for the better - difficult? Yes. But overall, an amazing experience that gave us so much and blessed us even more. 2) We stood to lose alot, but we also stood to gain even more with another child. And 3) God had not abandoned us in the midst of the most difficult journey of our life, rather, He had come around us in a powerful way to show us His love and we walked out the other side feeling unexplainable peace, overwhelming love, and even joy (not happiness necessarily, but a deeper joy).
When Piper was born, I was ecstatic! I didn't know how badly I wanted a girl until she was born, and then the whole 5th floor of the Foothills hospital knew! I shouted to the world, "It's a GIRL!" When we took her home later that day however, her brother was less than thrilled. He was expecting a brother and was quick to say so. It didn't take long though for Piper to wrap her little fingers around his and thus work her way forever into his heart. From that point on, he was smitten and he has loved her with a love uncommon to many children from his age (I say that from a partial standpoint of course!). I will write more about his love for her in another post, as watching it is something that has moved my heart many days.
Jordan and I both felt healing at work when we kissed her soft skin and drank her intoxicating smell in. We both loved her in a way we had not loved the boys before our experience with Drew. Each moment was encapsulated in our minds forever, each touch transformed into a memory. While we loved her so deeply, we also loved her outside of ourselves. What do I mean? With the boys, I loved them inside of me, holding on to them tightly. With Piper, I have loved her outside of myself, lifting her up to share her, loving her knowing she's not really mine but God's. I really cannot put words to it, but a Precious Moments figurine I found shortly after Drew died best describes the difference. She stands holding a beautiful star up, hands held high in front of her. When I saw it, I immediately thought of Drew, and how my love for him had been transformed from one that wanted to cling to him forever, holding tightly and desperately to him, to one that loved him even more deeply, willing to let him go, willing to share him, willing to give him to one greater than I. That picture has changed me as a mother.

We intentionally treasured each day, and our outlook was so different this time around. I found myself enjoying every cuddle, every experience and even every nighttime waking with her. I have laughed more, lived more and loved more!
As time progressed, the road we would travel became increasingly evident, while my prayers became even more fervent. By 5 months, I was suspicious that Piper might have a mitochondrial disease. By 7 months, it felt all too familiar, reminiscent of Drew's journey. By 9 months, our suspicions were confirmed.

What do you do when you are given months to live? I imagine I would want someone to love me like crazy, to make me laugh until my sides hurt, to help me live like there's no tomorrow and to be near me, providing comfort. Would I want them to mope around me? Not really. After her diagnosis, and really, long before it, we took this approach to her life. We have capitalized on every moment! I hope to share many of these moments over the next window of time.


  1. I suppose that's really how we should live and love, with or without a bad diagnosis. Thanks for the reminder to cease the moment- THIS day. You have always been a great example to me in that- the way you love your husband and children so wholeheartedly.

    And I LOVED the video of Piper. What a little character. And her goodness! I didn't know they were so big and blue. Her huge smile that takes up half her face reminds me so much of Drew.

    We love the Clark family so much!

  2. Your faith never ceases to amaze me, Kari. Thank you for your wonderful example and thank you so much for sharing your video of Piper. I loved seeing her so happy :) We love you all very much!

  3. Please give Piper extra hugs and kisses for us. Love and more love to you all. I can't wait to show the kids this video, they will treasure it.

  4. Thank you...for sharing Piper and your journey. We will treasure every moment!

  5. Oh sweet Kari. I really am at a loss for words. The only thing I can think of to say is how very beautiful your Piper is and also how very beautiful and deep your love radiates through her.....We are thinking of you, Jordan and Peyton and praying with your through your journey. You are a beautiful reflection of God's love. Thank you for sharing.
    With Love,
    Carrie and Earle Brown

  6. Kari, I don't think we've met before, but my husband and I have spent the past several months in Dennis and Marnie's small group study for young married couples. During the past months of really getting to know Dennis and Marnie, we have loved hearing about your family, seeing pictures of Peyton, Drew, and Piper, and seeing your story unfold through the eyes of Dennis and Marnie.

    As my husband and I have spent time with your parents and heard how God is working in and through you and your children, we have come to treasure your family. You are in our prayers, and I look forward to meeting you one day!

    Lynsi Marie

  7. Hi, friend! It's been a long time. You and your sweet family will be in our thoughts and prayers! Sincerely, Kendra Cutsinger

  8. My heart is with you on this journey. We lost our daughter (aged almost 5) to a mitochondrial disease in July 2011. She was very sick all of her life, and spent hundreds of days each year in the hospital. Our second child also appears to be affected, but more mildly. I will be praying as your days with Piper go by.... God has each of you in his hands.

  9. Kari and Jordan and Peyton,
    Know that you have prayer warriors all over. We have been praying and fasting on your behalf and will continue to do so. We love you

  10. Kari, you write so beautifully. What an amazing story of faith you have shared with us here. I am moved to tears. Love you guys and praying for you. -Chelsey

  11. Oh Kari, my heart broke when I heard. You are such an amazing person and Mommy. You have inspired us to not sweat the small stuff and to live each day to the fullest. When Thomas and I think of Drew we remember his huge smile. I know that his smile radiated all of the love surrounding him. Your children are blessed to be loved so purely and completely by such amazing parents. We will follow your journey with Piper, and I hope that her beautiful smiles will give you strength and comfort on the road ahead. Sending prayers and love
    Thomas, Madeleine & Oliver

  12. I was devastated to hear that Piper too had mito disease. What a bright light she is and will continue to be. Thinking of you all loads.
    (Ailish's mom, Jen's friend)