Tuesday, April 17, 2012

Piper's story - the diagnosis

Piper's story, Part 1:

I mentioned in a recent post that I would try to detail Piper's story a bit more so I will see what I can get done before I have to go catch a few winks.

Piper was born 10 days late. We were so hopeful she was healthy! We yearned for the healing a healthy baby could provide but were also aware that life had no guarantees. She was beautiful. We were in love. But we were also nervous. Jordan was suspicious from the start, likening her arrival to Drew's. Drew was born 11 days late and it was as if he was tired from the beginning, not quite strong enough to insist on a prompt arrival. With every day Piper was late, Jordan grew a little more suspicious. I tried repeatedly to ease his concerns when he did voice them but inwardly had my own concerns. I wanted to chalk them up to the normal fears any parent that has gone through a loss must experience with a new child, but they were there nonetheless. It was at this point I had to focus on the moment, keeping any fear at bay by living in the present, trusting the rest to God.

We have loved every moment with Piper. She has been such a unique child from the very beginning. She stopped people in their tracks with her riveting blue eyes that seemed to see right through to the soul. We made very few outings where someone didn't make a comment about her eyes. She would not close them even at bedtime unless we put a blanket over her eyes (thank goodness for knit blankets!). She seemed far older and more engaged than a baby her age should, causing us to stop and wonder at the capability of a child. While she was enchanting us, we were allowing ourselves to fall under her spell. For a while, I was almost able to forget that there was a possibility she could follow Drew's path. The days were blissful and I found myself head over heels in love. I loved the boys, but there was something different about this experience. I was so grateful for every experience, every minute with her that I never tired of my role. Where I may have reached the end of a day exhausted by baby needs and lack of sleep before, I now found myself enjoying every opportunity to be with her. I knew something was different when I didn't feel like complaining in the morning after a night of multiple wakings, but rather felt full from all the cuddles I had been allowed through the night. I was absolutely smitten!

At four months, as Piper and I were enjoying each other's company one day while Peyton was at school, I noticed her left eyelid droop for just a brief moment. It was enough to send panic through me and I realized in that moment that I must have been on guard on a subconscious level for any sign of the threat of a disease that could alter our future. I tried to relieve my fears with logic, but needed to hear from someone who would know if I was overreacting. Our course changed on that day.
I called our family doctor and set up an appointment. He didn't think it was remarkable, but he referred us to the same paediatrician who had followed both of the boys just as a precaution, and on the thought that she could begin to follow Piper to make sure she was meeting her milestones. In making the decision to see her instead of just the family doctor, we deviated from normal to hyper-vigilant. We had tried to avoid this but now our road changed.
In the following month, we ended up seeing the paediatrician, a paediatric opthamologist, and the neurologist and metabolic specialist who had followed Drew. The outcome was positive but not conclusive. They all thought Piper was doing well but could not guarantee she was healthy. Now what?! We opened up that can of worms hoping to lay any fears to rest, but had only served to do just the opposite! We tried to continue to live as normal as possible, but this cloud of possibility now threatened. It shook me deeply at first and I found myself asking God some very difficult questions.

Now that we were on the radar, Piper visited the above team for regular appointments. She continued to appear normal, and thrilled us at home with her strength and determination. She learned to roll over quickly and as she met each significant milestone, we let our defences down a little more. This was only temporary though as we watched her try to learn to sit. She began to sit at 5 months, but could only successfully sit without toppling at 13 months. As she worked and worked at this skill, I tried not to focus on the fact that it wasn't improving as quickly as it seemed it should. I thought I was being too vigilant so I stopped trying to get her to sit all the time and then I found myself thinking perhaps it was my fault because I wasn't giving her enough opportunities to practice. I couldn't bring myself to practice it with her without giving myself a pep talk first! This vicious circle was making me weary! My hope for her health began to waver as her balance continued to do the same. I was still enjoying her like crazy but I had now become that much more intentional in my parenting. I was learning to savour the opportunities, to enjoy each sigh, to treasure each new accomplishment, and to love her like there might be no tomorrow.

By 7 months, even the doctors were suspicious. We decided to have her tested. This was one of the most difficult things we had ever done. It was so simple. Because we had a diagnosis for Drew's condition, all it would require was a blood test, but due to the complex nature of the test, it would take 2 months to get results. Agonizing! Keep living. Breath. Enjoy. Carry on. Revel in life!

We got the results quicker than we thought we would. The nurse called and asked us to come in, which we had planned to do before, regardless of what the results were so we wouldn't have to get the news over the phone if it wasn't good. My heart nearly stopped and one could not examine the tone of voice and the words provided over the phone as many times as I did in the time between that phone call and the appointment. Keep moving. Continue to live! Breath Piper in deeply.

When one uses the expression, "wring your hands," I never really understand its meaning until the moment we were standing in the waiting room, waiting to find out our daughter's future. She was there with us, sleeping soundly, in perfect peace unaware of the agony our minds were feeling, of the fear that was barely contained. I think I nearly wrung the skin off of my hands that day. They asked us to come in and then asked us if we wanted a drink of water. What a surreal moment. I hate that moment, even though I loved their kindness. They didn't have to say any more. I think you could have heard a collective thunk as our stomachs sank and our hearts stopped for a moment. No. Please no. Not again. Not us. Not our beautiful little girl! God please! Make this moment just a bad dream. Ok. Keep breathing. Pray. Smell Piper's head. Feel her warmth. Revel in her innocence.

We walked out in shock. Reeling. But in a way, thankful. Thankful to have an answer. Thankful that we would be able to enjoy her in a full new way, seeking to savour the most life could provide. And thankful to be supported by such an incredible team of physicians, who were willing to bend over backwards for our family, as we would be faced with yet another indescribably difficult journey.

We decided we would try to keep the circle of knowledge about Piper's condition small, in order to allow our family to live as normal as possible for as long as possible. We didn't want to have this knowledge hang over Peyton's head and affect his schooling, etc. for any longer than necessary so we didn't tell him yet either. We planned to tell him when it seemed the moment of change was closer.
We learned with Drew that the fear of something is actually worse than the reality - it seemed that others' fears of losing a child and going through our situation was worse than what we were having to deal with in facing the reality, in a way. This influenced our decision to keep the circle of knowledge small - we didn't want others to have to carry this burden for us, or to have to face others' dismay over our situation when we were trying to live life to the fullest. We wanted to laugh and carry on without having to constantly face the potential reality. There would be a time to tell others, but our goal at that time was to create the fullest experience possible for Piper and our family. Love like crazy! Breath love in. Live love out.

It was strange, to live with this knowledge that Piper's life could be brief. My prayers began to change. They began to change from ones of pleading for the health of my daughter to ones of longing for God to be gentle on my daughter and my family. From ones of yielding my fear over her future to ones of asking for God to prepare my heart for whatever the future might hold. I have not stopped praying for a miracle, but I am not certain that the miracle will look the way I may have originally hoped it would. We prayed for a miracle with Drew, but the miracle wasn't that his body was healed, but that our family was healed, and that we received an overwhelming peace beyond our comprehension. A joy in the midst of sorrow that could overcome even the saddest of moments. A comfort that was eased all darkness and transformed it to beauty.

I know the road we face will not be easy and is already far more challenging than I would have chosen, but God is present and His love and the love we have for Piper will strengthen our hearts for the future.


  1. Kari, thank you for sharing your heart and your story. It has been such a blessing to have known you and seen Piper's beautiful smile. Sometimes life doesn't make a lot of sense to me, but love does and your love for Piper and for God and others in so evident. Praying for you guys everyday.

  2. I don't know you, but I think you're awesome. Can we be friends? :) Oh but would ALL parents love like you! And yes...those blue eyes of your girl's are RIVETING. Prayers from Texas.

  3. my friend,
    I am sitting here with tears, and wonderment. You have laid bare your heart, and shared some experiences I believe most parents fear more than any other. The thoughts that are coming to mind are first, sharing in those same hard questions posed to God. Second thinking of how our God of all comfort gives to us, and as Paul put it, allows us to in turn give comfort. What is amazing to me though, is that your story, words, and faith lived are in fact giving the comfort, whereas my initial intention was to be on the giving rather than receiving side. I think that what you and your family have shown is His love lived out, and consequently how it is that God is glorified. Thank you for sharing what you didn't have to, but were willing to. I will remain faithful in prayer.

  4. You are good and faithful. I know one day you will hear from God's very mouth.

    I can't thank you enough for sharing this.

    I love you.

  5. Oh Kari, you are such a beautiful woman! I could say more, but the words just aren't expressing my feelings in the way I wish they would. Holding you close to my heart and in my prayers. You and your family changed my life from the first moment I met you. Thank you for being in my life and sharing so much.

    With love,

  6. I was linked to your post through the BCS newsletter. I have been in tears from the moment I began to read about your family, your journey and precious Piper. I found myself looking up at my 3 young kids and feeling an even greater love and appreciation for them and for their lives in mine if that were even possible. Noah (almost 5) asked me why I was crying. His response? "God can help her." And then we prayed. Thank you for sharing your faith in God who IS faithful.

  7. I have read and re-read this post a couple of times, trying to find the words to respond with. I am deeply moved by this post and I am so thankful that you are so willing to share and include all of us in the journey with you. I am thinking of you all constantly, even dreaming of you guys, and I will continue to pray and pray and pray.