Friday, April 27, 2012


I have not written for a few days because I have been consumed with trying to make Piper comfortable and to spend as many moments with her as possible.  I am sitting in close proximity to her right now, hoping to soak her in while I type and her Papa enjoys holding her.  The last few days have been challenging.  Wednesday Piper cried much of the day and we spent so much of the day trying to figure out why and how to help her.  It didn't seem that she was really in pain, but something was bothering her. There were no answers and I found myself wishing she could talk, just for one moment even!  It was an exhausting day, emotionally more than physically.  Every time she was awake, she was crying.  She wouldn't let us touch her, wouldn't even let her blanket touch her.  It was as if she was uncomfortable in her own skin.  The hardest part of the day was that there was nothing I could do to soothe her.  I tried all the things I knew to try for her but none of them would stop her crying.  By the end of the day I was wondering what value I was to her!  I wanted so desperately to be able to comfort her!  Every bone in my body was aching to hold her, to calm her, but I knew that even my softest touch would be too much for her.  I felt as if someone should tie my hands so my instinct wouldn't take over and my hand slip out for a touch, just the lightest of brushes on her skin.  When she did fall asleep, we all tiptoed around her, afraid to wake her up and begin the cycle again!  It became clear by Wednesday night that Piper would not be comfortable awake unless we could find something that would help her cope.  Thursday morning brought some relief for her as we tried a few more things with the medications she was on.  She was beginning to calm down but over the day, she began to sleep more (which didn't leave much awake time in the day!).  Thankfully by yesterday afternoon she was able to be "awake" without whining and crying.  She would only be awake for 5 minutes but awake without crying for 5 minutes was better than awake crying for an hour!  The doctors don't think it's medication induced sleep but rather another step of progression in her disease.

Today was a blessing with a bittersweet twist.  She slept all day today, except to wake long enough for us to wet her mouth and for her to find her nose and rub it with the strength she could muster.  I thought she might rub it off this morning!  We put a sock on her hand early this morning because every time she woke up a bit over night she would go straight for her nose, and inevitably in rubbing her nose she would find her ng tube and fixate on it, trying to remove it!  She has always been one to rub her nose as she's falling asleep, and I have often wondered how it doesn't hurt her, but she's taken it to a new level now!  She worked her nose over so much that it was red this morning!  Since she was so determined to rub her nose, we thought if we put a sock on it it would keep her from getting a hold of her ng tube.  Ha.  Piper's personality and determination showed through again, baffling not just her doctors this time, but even Jordan and I.  We sat there watching her whine at it, rubbing her poor little nose when it was as if the light bulb went on and the sock went into her mouth.  She chomped down on it, barely missing her fingers and she pulled her little hand for all she was worth!  Success and freedom simultaneously!  She was free of the sock!  It was more than I could do to put it back on!  But that meant I had to watch her little hand like a hawk until she fell asleep.  We ended up putting the sock back on a few hours later after she successfully got a hold of the ng tube and pulled it out about 3 inches, with at least 3 of us watching!  She pulled the sock off again 2 more times.  As adorable as it was to watch these antics, it was not without whining.  Awake = whine.  As I write tonight however, she has not been awake since this morning.  That means no whining, but also, less Piper time somehow it feels.  I am relieved she is more content, but I miss her!  Ah, the times we have enjoyed!  We have been able to cuddle today again though so my heart cannot complain.  Whatever combination of where she's at and the medications she's on worked to create more contentment for her, less irritation with being touched and more peace for me as the gap my arms felt the last two days is temporarily filled.

I have to go now as it's my turn to hold her again so I'm off without fine-tuning this post, but I wanted to let everyone know where we are at today.  Thank you for your prayers for peace - they are working! And to any parent who has ever had to watch their child suffer for long periods of time, I must admire your faith and endurance!!!

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!

Friday, April 20, 2012

Pink for Piper... like a big hug!

Laura, Kallie, Klaire, and April, Avery and Allie all pretty in pink

My adorable nieces, Kallie and Klaire rocking in pink

I wanted to put together a longer post with more thought tonight, but I find my mind is weary today.  I feel okay in body, but my mind can't seem to connect two thoughts.  I am using the wrong words at the wrong time, leaving gaps in my sentences and spinning in circles!  Just when I think I'm doing alright with everything, I realize the impact of a situation like this on one's greater functioning.  Wow!  I won't try to put together anything much tonight because it might be like trying to read a dot-to-dot picture with half the numbers missing!  I just had to write though to share how overwhelmed we have been by the outpouring of PINK support!  There are not enough words!

When Kelli decided to get a Pink for Piper day rolling, we thought it was special that her two little girls wanted to show Piper their love by wearing their love in pink.  It felt like a hug, a connection from someone who cared enough to show their love in such a tangible way.  It touched even deeper when she relayed the effect it had on her girls and how they were impacting their school community through it.  

Then to see it spread around Facebook like it did - the pictures everyone took and sent for us to see!  I want to print every one of them and put them in a book to remember that incredible day!  My heart feels full just remembering how we felt Monday!  Overwhelmed puts it too lightly!  Our hearts were affected deeply!  I felt like I was walking around in a state of joy all day Monday.  To every one who wore pink, whether it was on clothing, or fingernails, signs or stickers...  THANK YOU!!!  One of my favourite days ever.  (Especially the part where I got to give Piper a manicure and Jordan a pedicure!)

To add to an already incredible memory, Peyton's school, Bearspaw Christian School, decided today would be a Pink for Piper day.  I can't think of a way to say thank you in a way that can communicate my feelings adequately!  It was so amazing to see so many people in pink, some that we have not even met yet, but who cared enough to go Pink for Piper!  Each one I saw felt like more than just another person in pink... it was a prayer walking, love expressed, support offered, a heart shared.  Thank you!  It meant so much, not just to me, but to Jordan, to Peyton and to our entire extended family.  When I dropped Peyton off this morning, he immediately noticed the pink.  We were driving up and he noticed a mom driving away, wearing pink.  "Look Mom!  She's wearing pink for my Piper!"  When we got into the parking lot, there were more Pink Supporters.  "Mom!  There's another one!  Look, she's wearing pink too.  And he is.  And she is too!  And another one!"  He could hardly wait to get out of the car, and that's different for this week.  He has not wanted to go to school yet this week, not wanting to miss a moment with Piper and wanting to be near Jordan and I.  He nearly ran into school.  There were a few more wearing pink along the way and it seemed to bolster his confidence.  We got into the classroom and I think everyone in there had something pink on, from clothes to hair!  He couldn't believe it!  I was only able to hold back the tears by thinking about it in my mind, instead of with my heart.  I needed to save that for later!  This is a treasure that Peyton will remember for a long time, and I hope it will provide the foundation for healing that he will need in the coming days in a place he will spend so much time.  To all the families in this community we are a part of, thank you.  We are blessed to have your support and love!

A quick update on Piper before I turn my mind off for a few hours - she had a good day today.  Quiet and calm for the most part.  She seems to be very comfortable most of the time and was actually awake for a few hours today.  She recognized me today and actually expressed a desire for Mommy which did more for my heart than I can say.  One of my favourite parts was when her dainty little hand with its pretty pink nails reached out and settled on my arm, lingering there as if it was in the most comfortable spot.  I didn't want to move!  My baby... she must know how much I love her!  I want to remember the moments like that one... where I can see that she knows she is loved and safe, that I am her comfort.  I wish I could collect all of the moments like this that she has ever shown me to keep them all in one place for easy recall!  

She is getting weaker but there is still so much of her that we can see.  She sleeps so much, but even the doctors are surprised that when she is awake we are able to see so much of the Piper we know and love.  It is a treasure!  I am certain it is God's doing!  Perhaps the miracle He is working?  I don't know but I am grateful to be able to connect with her as long as possible in this way!  My heart treasures every opportunity.  Oh to have so many more!

Wednesday, April 18, 2012

Favourite moments from Tuesday

The Rotary Flames House is amazing. We have spent quite a few hours swinging in the sunroom with Piper, some in the Flames game room with Peyton and many in the comfort of the suite they have given us to use for Piper's stay here. One of the most amazing experiences we have had here was one we enjoyed last night. It was magical and I am so glad we were able to share it as a family.

The night nurse suggested we take Piper down to the multi-sensory room here in the house. We decided to all go at the same time and to let Peyton "help" Piper try things out. I'm not sure who had more fun among the handful of us down there! It was so neat to see Piper's reaction to the room. At first I thought it would be too much and I was worried it would overwhelm her or compromise her health in some way with too much stimuli. After I realized she was actually settling down instead, I relaxed and began to enjoy the experience with her.

We settled her onto a heated water bed, nestled among some fiberoptic threads for her to explore with her hands. We weren't certain what her visual capabilities were until last night, but the way she was looking toward the lights and opening her eyes wider as if to take it in it seemed she might actually be registering something of what was around her. She blinked at me and almost tried to move a bit when I got in her line of vision as though I was in the way! We were able to change the colour of the lights in the tubes and threads at the roll of a large dice and it was interesting to see how her response changed based on the colour. When it was purple or blue, she opened her eyes more and moved her hand around a bit. When it was red, she calmed and nearly fell asleep. That was the opposite reaction I expected! She had been a bit fussy before we walked in, but hardly made a peep while we were in there. When we walked out, it was like she had been to a spa! Peyton on the other hand came out completely wired! He loved the experience! He loved helping Piper by changing the lights, playing some of the musical instruments in there for her, and creating waves on the waterbed with her. I was a bit uncertain of the combination of waterbed, Peyton and Piper though, especially after he asked if he waved it enough if it would launch her! I love the boy in him but it always surprises me how much of his mischief Piper willingly puts up with! I am so glad they were able to share this opportunity together and that our whole family could benefit from the creativity of some very talented individuals. I want one of these rooms in my house for those sleepless nights!

The gentle prayers of children

Peyton's teacher, Mrs. Cossette, came to visit Piper the other day after school and brought a special little something with her. She waited until Peyton entered the room and then asked him if he wanted to show Piper what the kids in his class had made that morning. He was so excited. He pulled out this blanket for Piper as he and Mrs. Cossette explained what it was. Each of the children in his class wanted to send their love and prayers to Piper and wanted her to feel that they were laying their gentle loving hands on her to bring her peace and comfort. I have no doubt that she is covered in God's love when she is covered in this blanket! Thank you to each of the children that spread their love to our family through this soft touch of paint. Thank you also to the hearts that made this idea a reality.

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.

Monday, April 16, 2012

It was a Pinkeriffic day!

To everyone who went out of their way to go Pink - thank you! There are just no words to express how my heart is feeling tonight. Absolutely overwhelmed right now! I am supposed to be in bed so I won't be too tired for my shift but I cannot go to bed until I say thank you to everyone who went Pink for Piper today! You have hugely impacted our world!

Here are some pics from today!

I want to add more to this, but I have to go to bed so check in again for more!

Thanks Ronni and Martin! Beauty for Beauty!

Thanks Rick and Michelle - Love with Petals on it!

Now this Daddy LOVES his daughter... the only time in his life he will ever go for this!

She slept until the middle of the afternoon so we had to lay the shirt on top until we felt like it was ok to bother her to put it on!

Sunday, April 15, 2012

Pink for Piper!!

Some dear friends decided tomorrow, April 16th, should be Pink for Piper day, and they have decided they will going all out in pink for the day. I am so touched! I don't have much pink here in my suitcase, but you can bet I will be looking around to find as much pink as I can, in addition to painting all nail surfaces attached to me pink! If I can manage it, I may even paint Jordan's toenails pink! That might be a stretch, but knowing how much he loves this
little girl of ours I am sure he would go to just about any measure to show it!

To know that there will be so many praying for Piper tomorrow means so much. There are times when these prayers hold my arms up when I feel I cannot continue to do so alone. Thank you!

Saturday, April 14, 2012

Where are we at today?

Piper has had a few stable days now. I haven't posted on her condition because nothing has really changed since the middle of the week. We are thankful to have had a few good days of cuddles and no drama. She has been pretty fussy though when she's awake so I would love your prayers that she won't be so fussy, and that we can figure out what's bothering her.
My favourite moment of the day today was when she smiled at my Dad in her sleep. I have missed that smile so much! The moment was far too fleeting! She hasn't smiled since Monday, and even then, it wasn't the same as the charming one we would always work so diligently to see. I have made a fool of myself so many times to see that little grin! And I would a hundred times over to see it again! Ah, the power of a smile!

Make a difference for Pipsi

I am so overwhelmed at the support we have received since we began this journey with Piper. We have had a constant stream of visitors, phone calls, emails, etc. offering concern, expressing love and promising prayers. We are filled up by these outpourings of love. We feel buoyed by this support. So many people have asked how they can help too, wanting to do something to show they care.

When Drew was sick, people would offer to help and at first we often turned it down, either feeling like we could do it on our own, or out of fear of inconveniencing someone. Somewhere in the middle of Drew's illness I realized that if the roles were reversed I would want to do anything to help, to show I wished there was something I could do, some way to make it better. It seemed that by saying no to help offered I could be taking another's opportunity to contribute away and I could possibly be quenching the Holy Spirit's prodding of another to help. After this thought, there was nothing to do but accept help with a grateful heart.

This time around, our needs have been quite different. Right now, we are at the Rotary Flames Children's Hospice in Calgary. The Flames house is an amazing place. They provide us three meals a day at no cost to our family. The accommodation is very comfortable and relaxed. The support here is phenomenal, from the nursing staff to the music therapy to the comic relief the chef provides. Because our entire family can stay here, we are able to take shifts with Piper, providing comfort to her around the clock. I am able to spend more time with Peyton too. It has made a difference in our family dynamic for certain. It was so difficult last time to spend time together as Peyton needed to be home for bedtime in the early evening and he would often get a little stir-crazy sitting in the hospital for hours on end. Here we have our own space, there are things for Peyton to do and for us to do together, and we can spend free moments during the day/evening together. What a blessing!!! To all those who pulled the strings so quickly to make this possible for us, we cannot say thank you enough!!!

Because we are here, our needs are limited. We do not need meals. When we do get home, we are not often there long enough to take care of the basics like cleaning, etc., but Peyton's hockey team is covering cleaning for us - thank you to everyone contributing to that!!! We have a crew that often brings us coffee so the bare necessities are covered. When asked what else we need I can't think of anything - God is providing for us so generously. So how can those that want to help contribute? We would love to see others take the spirit of kindness they want to show us and show it to someone else on Piper's behalf. It would mean so much to hear how your your love for Piper and our family impacted someone else! To hear how Piper's life has made a difference through your kindness! If you are willing to share, we would love to hear your comments. (Please let me know if you would be ok with us sharing it. You can either share it in the comment section of the blog or send us an email at

God has a purpose for Piper's life and we are certain He will not take her until His purpose has been accomplished. I pray He will use her life to bless others! My beautiful baby girl, I love you! You have blessed me!

Thursday, April 12, 2012

A few of my favourite moments for today

One of our favourite things to do together.

One of my favourite pictures ever!

Set up for the next picture...

Piper's amazing flexibility... this is how she got up to sitting or back down to scooting.

My favourite moments from today so far...
  • When Peyton snuggled up to me in bed this morning as I caught a few moments of sleep after my shift with Piper and before Peyton was off to school. It's a wonder to be loved by a child!
  • When Piper calmed immediately as I leaned in, cheek to cheek, close enough to smell her and for her to smell me.
  • Painting Piper's little toenails pink! I have loved every minute of having a girl!
  • Watching so many of those we love love on our little girl!

Wednesday, April 11, 2012

"I love you"
It's amazing to me how much a hand can communicate! Piper had a stable night Tuesday night and a good day yesterday - I am very thankful (stable meaning she didn't throw us any new curves). She woke yesterday morning with that little right hand moving all over the place. She is so weak she can't move much else and she can't seem to see anymore, even though her eyes are occasionally open a slit, but her little right hand contains every bit of the Piper personality I am used to seeing. It's remarkable. She alternates between playing with her blanket or floating her hand over her body, to getting up to mischief like trying to rub the nasogastric tube off her cheek or trying to take her diaper off by pushing at it with all her might. She was playing with Grammy's zipper and pinching her cheek yesterday morning for a bit too.
We have been wetting her mouth with a little foam brush and letting her suck the water off it and we wondered if she liked it or not. She brought that little hand up and did her best to hold it there, and then reached for it when we took it away to wet it. She tries to move our hands if she isn't happy with us touching her tummy or her arm at a particular moment. She tries to move her blanket to the side of her body if she doesn't want it on. At her worst overnight Monday night, she used every bit of strength she could muster to try to move Daddy's hand off her arm. It's like her hand is talking out loud, communicating her desires. I marvel at the many small ways one can communicate that I never would have looked for before Drew; the things a small facial movement can convey, the needs a hand can communicate, the joy a foot can express, and the contentment a sigh can reveal.
The music therapist came by today and we moved Piper's foot over to touch the therapist's guitar while she played. Piper's breathing slowed down and evened out as though she was intently listening, and her foot gently moved off and back on, off and back on, testing the vibration. She didn't open her eyes or change her expression, she didn't even move her little right hand, but her little foot clearly communicated her participation in the music. A few minutes later, she fussed a bit possibly due to discomfort with her position so I stood up to dance with her. She quieted, sighed and seemed to melt into the music.
I would love it if she could speak but I have not really felt frustration with her inability to speak because she can still communicate so much. Ok, I have to take part of that back now that I think about it... there have been a few times where I have wished I could see inside her little head to see what she is experiencing, but it seems that so far she has been able to communicate her desires fairly well. I am thankful for that.
When she was born I remember thinking, "I want to learn every little thing she likes in case there is ever a moment where she can't tell me what she likes." I watched like a rapt audience, recording every sigh of contentment in response to this or squirm in dissatisfaction to that. She loves to be face to face, head to head. She loves gentle, stroking touches. She calms to consistent soft shushing sounds. She likes to be held sideways and in close. She likes to have her hair played with, and her face stroked, but she doesn't like to have her eyes or the bridge of her nose stroked. She relaxes with music, but will not go to sleep to it. These are only a few of the things she taught me and I am sure there are so many more I could learn. I just hope she knows how much I love her through the measures I take to show her. I would do anything for this precious child. It is amazing to me to how much joy I get out of being able to provide her comfort! Is that how God feels I wonder?

Tuesday, April 10, 2012

In the moment

This moment is a good moment. I am content in this moment. Piper is breathing calmly, snuggled up in her Papa's lap sound asleep. We are meeting her needs in this moment and loving her in this moment. I am unable to live in any moment but this, really feeling deeply the truth, "do not worry about tomorrow, each day has enough trouble of its own." When we were first getting suspicious that Piper may be sick I quickly realized that the only way to get through this would be to remind myself constantly that all I have to do is love Piper, in the moment. If I love her in the moment, anything we have to deal with will be ok because we will be making any decisions based on our love for her, and we will be seeking to do whatever we can in that moment to show her our love. I don't have to worry about what she will be like tomorrow, or later. I don't have to wonder if she will be ok or if it will be too hard to deal with certain experiences. All I have to do is love her right now. Right now. I am amazed how much relief that has brought, being willing to relinquish all moments but this one to one able to handle the rest. And I am grateful.
It has been strange. Living so intentionally in the moment. I guess I didn't realize how much we assume a future until we couldn't assume a future. Our experience with Drew taught us to live one day at a time, almost to the point that we were unable, or unwilling, to make plans for any day but the current one. Any time we would make plans, we would end up having to change them. It created a new paradigm that we took forward even after his journey here was done. We began to create plans again after a while, but only recognizing the frailty of our plans. When Piper was born this perspective was only reinforced. There were so many days where I would rock her to sleep, breathing her in, where I would find myself thinking, "I am so grateful for THIS experience." We have been so intentional, we have created so many moments, and yet I began to wonder, "What is the value of enjoying THIS moment? I can't take it with me, I can't keep it, I might not remember it, so what is the purpose of embracing it like this?" I think I finally get it... it seems that the value is that even if I can't remember every little kiss, every little nuance, every funny giggle and sound, these treasures have created a love that will change me forever! I might have forgotten some of the little things about Drew I hoped I never would, but those experiences filled me up and I am still full. I love him still. I am marked by him forever, shaped by my love for him. I am a better mom for Piper (and Peyton) because of him. I am so thankful for his life. And I am so thankful for Piper's life. Besides, who couldn't love this???

On a more present note - Piper is not doing well. I will try to post a summary of our journey over the last few weeks in a day or two, but for now, I will just let you know where today has taken us. She was doing alright yesterday but not tolerating feeds well, which she has been receiving through an ng tube for the last two weeks. It got worse last night and by early this morning her breathing was quick and shallow, she was mostly unaware and her prognosis was not good. We had to stop her feeds for now because she couldn't keep them in. It was difficult to watch her and yet even then, you could see her little fighter spirit. At her lowest point this morning, she could barely move a muscle but she wanted Daddy to let go of her hand (she has never liked to have her hands held or restrained in any way). He was holding it gently because she began having constant seizing in her arm and it seemed like a tangible way to help, to keep her from hitting her side over and over with the iv tubing attached to it. She summoned what strength she had to reach over, so slowly, and began to pull at his hand. My amazing little girl. Your strength overwhelms me. I could be stronger in that moment because of you.
We thought we were going to see her off this morning, but she had different plans. She has stabilized some over the course of the day and has been very comfortable all day. She has had her eyes open, those little blues that never want to miss a thing and can see right through to your soul. She was even moving her dainty little right hand, floating over her blanket, fingering it, intertwining her fingers in it. My heart relaxed a bit watching her find comfort in these little things today.
We will take it one day at a time, and we are uncertain of her future, but for today here are a few pictures of my favourite moments!

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.

Meet my dear little Piper!