Wednesday, May 23, 2012

Thank you...

My heart is heavy tonight but I wanted to write and say thank you to the many that are holding us up right now and that have held us up over the last two months and more.  There are really not enough words to express how grateful we are for the way you have touched our hearts and supported us.  The hardest part of the journey has begun and as I sit here in tears, not wanting to do the work of grieving, I know that God will hold us up, that He will reach out to show us His love even now.  Selfishly, I want that love to be tangible, to be able to feel it and experience it.  (Really, if I am honest, I just want Piper here to hold on to.  My mind and my heart are yet again in two different places.  I know it will be ok, and that I will get used to this new normal without Piper near but my heart doesn't want to adjust to this new normal.)  His love is tangible, if I can get my head out of the sand to see it.  I will remind myself even now of this love shown through the hands of so many, and I want to thank all that have walked this road with us.  
I am thankful for the wonderful nurses who cared for Piper with more than just their hands, but with their hearts too.  Every nurse we had went above and beyond, and we were reminded yet again of the amazing role a nurse plays - we are thankful for the care that each one provided for Piper, but also for our family.
I am thankful for the doctors who made every decision almost as if they were deciding what to do for their own daughter.  They were so professional, and yet so personal, so caring.  Each one left an imprint on our hearts as they held our hands through such a difficult experience.  
I am thankful for the people who made it possible for Piper to get the best care possible, there must have been so many people pulling strings behind the scenes.  To all these people, thank you.  It was such a gift to be able to sit and love my little girl without having to worry about anything else over the last 8 weeks.
I am thankful for the people who have brought us food, each morsel representing so much more than food.
I am thankful for my parents and my parents-in-law who showed so much love to Piper both in the giving of their time to her and in their support of our family.  I love you all, thank you for loving Piper!
I am thankful for my family, both sides!  Piper's aunties and uncles are amazing and we are indebted to each one of you.  Laura, your artwork is incredible.  James and Nic, the slideshow was a rare gift.
I am thankful for my brave son Peyton who makes me laugh even now, who reminds me of what really matters, who is so courageous and strong, who can cut to the chase and call things as they are, sensing my feelings even if I have tried to disguise them, and who is tender-hearted even while strong.
I am so thankful for my husband.  There are just not enough words to say what I am thankful for about this man, but there is no one else I could walk through this with.  I am glad you are sharing this road with me and helping me along it.
I am thankful for the amazing acts of kindness done by so many, it truly is a privilege to see this side of people's hearts.  I have to list just a few, but please know that if I haven't listed one, it isn't because it meant any less!!!  KidsPhoto at Market Mall - you provided the most amazing pictures of Piper at the perfect moments, and have continued to surprise us with your generosity and heart.  The crew at Riley's printing - your generosity overwhelmed us!  The crew at the funeral home - they tied pink ribbons everywhere they could, going above and beyond.  Bearspaw Christian School - I am so thankful for your prayer support, your support of Peyton, your support of our family, and at the incredible show of love when you all wore Pink for Piper!  The nurses on Unit 3 - we love you all still! - so  many of you visited, and when I heard the Unit was wearing pink on Friday for Piper's memorial I was moved to tears.  You all have left such an imprint on my life.  
I am thankful for the many that have emailed or connected through this blog or through Facebook to let us know they are supporting us!  Thank you!!!  You cannot begin to imagine the value each connection has.
I am thankful for the many that read this and don't know what to say, but that pray.  There really are no words - I would not know what to say to myself either.
I am thankful that I was able to be part of the most beautiful day last Friday.  Thank you to each person that attended Piper's celebration.  I would have liked to be able to thank each of you in person, but please know we were so grateful for each and every one of you that attended.  The day was magical.  It was as close to a wedding celebration as we will get for Piper and that is how it felt many times during the day, as though it was a day to celebrate, to rejoice, to marvel.  There must have been many praying throughout this day for our entire family to feel the presence of God so strongly and to have enjoyed so much peace and joy throughout the day.  Thank you!
I am thankful for the families that made a long distance trip to celebrate Piper with us Friday.  I am thankful for the people who made it possible for these families to come too!!!
I am thankful for all the people who helped make this event one to remember; Bud's thoughtful opening prayer, Kelly's heartfelt words, Marcel and Philip's sweet rendition of The Lord of the Dance, Nicola and James' amazing slide show, Laura's creative programs and magnets, the ladies who brought food and made the day move so smoothly -- each person contributed with their hearts and we appreciated it all.
I am thankful to have been touched by the love of a little girl that will leave me forever changed.  I love you forever Piper.
There are certainly so many more that I would like to thank but please know that even if I have not included you in this list in some way, we are still grateful that you are part of this journey.

Tuesday, May 15, 2012

Piper's celebration service

~ A celebration of Piper's life... (aka funeral) ~

Everyone is welcome to join us on Friday morning, May 18, 2012, at 10:30 a.m. to celebrate Piper's life.  Her service will be held at McInnis & Holloway's Park Memorial Chapel (5008 Elbow Drive SW - please note, due to construction there is no access to 50th Avenue off of Elbow Drive).

For any who may desire to send flowers perhaps you would consider donating "in memory of Piper Clark" to the Alberta Children's Hospital Foundation.  Thank you!

Monday, May 14, 2012

Learning to breath again

If you ask me if I think it is going to be easier the second time through the grief process my answer will be, "Yes," and, "No."  Is it easier to recover from breaking a bone the second time around?  You know from experience that there will be an end to the intense pain.  You know there are things you can do to help with the pain.  You know the pain will not always be intense pain, but may change to a dull ache that is there occasionally or that may worsen at certain times.  You know healing will occur as long as you take care of the injury.  But you may also be afraid of the pain, anticipating it.  You may hurt more because your tolerance for injury in that bone is lower in some ways.  Because you know the pain will continue for a while, you may grow weary, aware enough about the injury to know that you cannot do anything to speed it up or make the pain stop.  The knowledge may help in many ways, but may also make it harder in other ways.  It's a bit like childbirth too... I thought my knowledge of the process would make it easier the second and third time around and it did in many ways, but it certainly didn't take the intensity of the pain away!

This is what I am finding this time around so far.  I have learned a lot about how to manage our grief, but I have also learned ways to stuff it.  I like to call it self-protection or dosing, but sometimes it more closely resembles "stuffing it."  Before Piper was born, I got to a point in my grief with Drew where I could talk about him and think about him easily when I did so at a "mind level."  It would be a different story if I went to the "heart level."  I got to a point where there weren't so many undiscovered land mines or triggers that couldn't be anticipated and where I could choose when I wanted to experience Drew at the "heart level."  I could almost choose when I wanted to cry, when I wanted to let my heart feel the pain again.  I don't say "pain" as if it's a bad word though, because the tears I would cry were often cathartic and reminded me more keenly of my love for him.  I just learned that I couldn't afford to function at that level all the time.  It would take a physical and emotional toll on my body.  I think learning this was a good thing - I had worked through the grief enough to feel good about where I was at, but I had also learned how to manage the pain.  If I am honest about the situation though, I would have to say that there were times when I probably should have opened Pandora's box and decided not to.  Now we are back at a place where you cannot close the box.  Where you have to function at a "heart level" in order to keep breathing.  It hurts.  The knowledge of the process is not helpful right now because it's still too raw.  I know it will as I delve into the work of grieving but right now I just want to feel how I feel and not try to manage it.  Ug.  I sound like a 2-year-old.  "It's my party and I'll cry if I want to!" 

It has been easier in a way because I know there will be an end to the intensity of the pain.  It has been far harder in another way though and I couldn't have predicted this.  When we said goodbye to Drew's body and walked out without him we didn't feel the permanence of that because we were in shock and didn't know what we do this time.  This time, when we had to watch the funeral home staff drive away with Piper's body it was all I could do to let it go, even though it was just her body.  With Drew, I didn't want to kiss his body after he was gone... it didn't feel like him.  With Piper, I knew it was all I had left of the physical aspect I had known and enjoyed so much.  I wanted her in 3D!  I felt so conflicted... I wanted to be in the room with her, holding her body or being near enough to see her, but I could feel that she wasn't there and I didn't want to be there.  What was worse?  I knew that once they took her away that would be the last time I would get to see her little body, no matter what it looked and felt like.  That was the pain that foreknowledge brought Saturday morning.  I did not have such a hard time with Drew - I was able to imagine him in Heaven and happy and be happy for him.  This time, with Piper, I tried to let that be enough, but the injured part of me agonized over the fact that as soon as I let her go I would, from that moment on, be one step further from the reality of my physical relationship with her with every day that passed.  Ug.  That hurt the most.  Thankfully, my father-in-law reminded me that I was also one day closer to reuniting with her spirit but that didn't take the edge off the pain Saturday.  

I recognize so many parts of the grief process and have names for them this time, but that doesn't make experiencing them any easier.  It just makes me a bit frustrated that I have to do this work again.  I will. And God will help.  But right now, I am frustrated and sad.  And I need to allow myself this.  It seems like this must be how a psychologist would feel if they had to go through something like this, or if a doctor had to have an illness they knew too well.  I am sure the experience will be different this time and I know it will enrich my life in some ways, but today I would just rather hold Piper.

On a brighter note, for those who think I must go through the day in tears, that's not really the case thankfully.  I may burst into them unexpectedly, but they are fairly well contained to those trigger moments and moments where I am sitting in Piper's room or holding her blanket close (or a few other moments...).  I am able to enjoy the sun shining on me and Peyton's vibrancy.  Peyton makes me laugh and Jordan anchors me.  I think I feel everything more keenly right now, both the up's and the down's.  I said after Drew that he made me go from seeing everything in black and white to seeing everything in full colour, and that feeling is even stronger now.  I feel the whole spectrum more intensely.  Yesterday, I could hear Peyton puttering around before I climbed out of bed and wondered what he was up to.  I heard him in Piper's room and thought, "Uh oh.  It sounds like he might be trying to put stuff away!"  (We have put all the things we had for her at the hospice in and around her room but not away.  I wanted time to go through it all.)  I felt awful for him having to do that by himself with all the emotion that would be attached to it.  Then I heard him leave that room and go putter somewhere else.  A few moments later he came by and closed our bedroom door, thinking I was asleep and wanting not to wake me.  I laid there trying to restrain myself from investigating because it was Mother's Day, and I didn't want to ruin the possible surprise that seemed to be in the making.  I finally nudged Jordan out of bed and coerced him to go check it out, to determine if it was ok if I came out.  When they let me out, Peyton was just brimming with pride.  He grabbed my hand and showed me what he had been up to.  I had visions of a kitchen splattered with breakfast makings or a Lego work of art and all it's trappings nearby but it was better than that.  It was beyond my expectations.  It took me to the brightest end of the spectrum and the opposite all at the same time.  First he took me into his bedroom and showed me that he had cleaned it all up - it was beautiful!  Then he took me into Piper's room.  He had cleaned it up too.  He put away all the clutter and moved a few bags of clothes behind the rocking chair, and rearranged a few of the other bags alongside the wall on the other side of the room so they were out of the line of vision.  But the true work of art was the crib.  He laid the blanket he used to use but had given to Piper to use a few months ago in the crib, then he emptied the bag of stuffed animals she had with her at the House and gathered some others that were around the house and lined them up all around the outside edges of the crib.  The work he did in his room was beautiful but in hers it was a work of art, created with love and absolutely perfect.  Gut-wrenchingly exquisite.  How do I keep the tears in, when he is wanting to see excitement and pride in my reaction?  With great fortitude and a fair amount of acting.  I was so proud of him and so excited, I just knew I wouldn't be able to explain why I responded with tears when he had worked so hard to make me happy.  All over the spectrum, in a moment.  

Favourite moment of the day today... laughing our hearts out while playing baseball in Jordan's parents' back yard tonight.  The bat alternated between being a roll of garden fabric or a broom depending on the size of the batter and the ball was a lightweight plastic one.  The gloves were plastic whiffle ball catchers.  Between Uncle James leaping around like a ballerina, Jordan sliding into home plate and swinging that 6 foot bat around, Peyton giggling like crazy and me trying to play outfield with a tree in my way we ended up laughing until our sides hurt.  From crying to laughing.  Learning to breath again.

Saturday, May 12, 2012


Piper, you are without a doubt the most beautiful spirit I have known.  You have caused me to grow in so many ways and made me aspire to be far greater than I could have without you.  I looked forward to seeing you every morning and cuddling you in the middle of the night as many times as you would call; there was never a time I tired of holding you and spending time with you.  I revelled in opportunities to stop and watch you during the day - Drew taught me how valuable that was but you taught me how much it could delight me!  I love the way you would grab my hand with your gentle hands to pull it over to do something you needed help with, the way your hands lingered on my cheeks, the way they explored every mouth that would open for them, the way you used them to make art out of food, the way they refused to be kept from exploring and moving, and the way they communicated so much -- my heart bears Drew's handprints still but your tender touch transformed my heart and reshaped so many parts of it; your handprints join Drew's in making something more out of my heart than it was before.  Your eyes looked into my soul from the moment they opened -- there were very few things you missed, if any!  It seems you tried to squeeze every drop out of life, compressing the beauty, love and opportunities of a long lifetime into a few heartbeats of time.  When you leaned over to tenderly kiss me of your own accord 8 weeks ago, and then leaned back and looked at me only to lean in again and kiss me again, every fiber in my being understood the depth of love a mother could feel.  I have been forever changed by your love!

Now you are dancing... running with dainty steps across the soft floors of Heaven, enchanted by love so perfect, captivated by beauty, surrounded by comfort, wrapped in peace and yet missed so desperately.  I felt you were leaving last night, that you were nearly ready to go, but it seemed you wanted to live to the fullest for every single minute you would fill this physical body.  The nurses wondered at how you were so determined to be so strong last night, unusually so in comparison to many they have seen.  I cannot describe the feeling it created when I held you for hours before bed last night, trying to meld your body with mine, kissing your head as many times as I could.  We cuddled long and sweet, and you shared your time with both Daddy and me so willingly, thank you.  When we went to bed it was only with reluctance.  I felt it was nearing time to let you go and didn't want to miss a breath!  Even as I lay next to you trying to warm your little feet, sleep would not come.  I had tried to prepare my heart for this moment, but how could I when I have loved being with you so much and this would mean being apart from you for far too long?  I lay there a long time, covering you in prayer and trying to will you to know how much love I felt for you.  If love could have created a cocoon, you would have been in the thickest, softest one imaginable.  I will always treasure the wee hours of the morning today, as you and I lay close enough to feel each other breathing, body to body.  Close enough for you to know my presence even with your eyes closed.  Close enough for me to sleep with my lips near enough to kiss your soft head.  With your little feet were tucked into my legs to keep them warm.  I must have drifted off in contentment sometime after I was sure I had done everything I could to surround you with my love and with comfort.  The nurses came in at 3 a.m. this morning to check on you and we were asleep together, almost as one.  I had asked them last night to help me rotate you sometime in the night and as this seemed like the best time to do so they gently turned you on your other side, checking to make sure you were comfortable before they left.  You were now face to face with me and I tried to bring you into my embrace again.  As I was moving your feet around to tuck them into the blanket and whispering to you, kissing your head, I heard your breathing change.  Strange - you weren't challenging life with each breath any more, you seemed to be breathing life out.  I woke Daddy and just as he leaned over to kiss you, you traded in your tenderly manicured toenail polish for dancing shoes.  In a sigh you were gone.  How do I kiss you now?  Piper, my love, I have loved you more deeply than I thought possible and my heart feels broken in this moment.  I know time will heal and God will reshape the wounds to make something beautiful out of them, but I don't want to think about that yet.  I am just sad I cannot hold you again, sad I cannot feel your gentle touch, sad I cannot watch your vibrant blue eyes light up.  I know you are ok, but selfishly today, I just want you here.  How can I expect that I would not feel a gaping hole when I have held you so close for hours every day over the last 6 weeks -- my body is in withdrawal of the most severe kind.  I can feel your weight burning a spot in my being, creating a Piper-shaped space that will never be filled.  I feel Drew's still, and I know that whatever life brings, these spaces will always be there, almost tangible in nature.  Thank you for leaving your mark on me Piper.  You will forever be one of the best parts of my life!!!

I would be remiss to close this post without saying thank you to everyone who has contributed to allowing me to enjoy Piper to the fullest at every stage.  I hope you all know who you are!  I will try to say thank you better in a later post, but right now, please just know that our hearts are full, overflowing with gratitude at all those that made the time with Piper during her illness one full of treasured moments.

To those wondering what to pray about, thank you for your prayers and please continue to pray.  Pray for Peyton especially as we work to help him make sense of things.  I have tried to write about his experience a few times now but am unable to get through a post yet.  There are so many pictures of them together and memories of their relationship that I couldn't settle on the best ones to share.  I pray God will soothe his heart even more than my own.  Thank you.

We will post more information here about a celebration of Piper's life in the days to come.  Thank you for following our story!

(One note -- for any who may desire to send flowers perhaps you would consider donating "In Memory Of Piper Clark" to the Alberta Children's Hospital Foundation.  Thank you!)

Midnight musings

This situation has brought me to my knees in so many ways.  I recognize now more than ever that I am fragile, that I am incapable of playing God, that I can do so little when I want to do so much, and that I cannot have all the answers I want!  What do the wanderings of my heart look like in the dark hours of the night and the quiet hours of cuddles during the day?  I find it helpful to write them out because when I verbally process (writing counts!) it seems to help me make sense of the circles my mind runs in, then somehow I can rest.

Some of my musings:
What takes more faith - praying selfishly for Piper's physical healing or praying that my heart will be open to whatever the outcome is and not just ok, but full?  

If Piper isn't healed physically, was my faith too weak?  It becomes my fault if I say that her physical healing is dependent on the strength of my faith.  Then I am putting my faith in the power of my prayer instead of in the power of God.  Is it a cop-out to allow myself to pray both for her healing and to allow for the possibility that she may not be?  I looked for an answer on this and remembered that Jesus prayed,  "Abba!  Father!  All things are possible for You; remove this cup from Me; yet not what I will, but what You will."  (Mark 14:36)  

Would Piper rather I pray that she can stay here with me or that she can be in a place with no tears, with no pain, with no suffering and with more safety and security, more beauty, more wonder, and more love than I can provide, let alone fathom?

Are all the incredible things we have experienced just coincidence?  Is it God working?  If I choose to believe it is, where does that put me?  If I choose to believe they are just coincidence, what does that do for me?  What is the better place to be?  Is there a downside to believing it could be God working?  There certainly are benefits to believing it is.  I find that believing God is beyond explanation and my small understanding provides more comfort than less.  

Friday, May 11, 2012

Emotions unraveled

I am so confused at this moment.  My emotions are in a jumble.  We have experienced so much peace from day one of this journey with Piper, but today my mind feels like someone took it and stirred things up.  I still feel peace and God's presence, but I am in an uncertain place emotionally.  I go from wanting everyone around to wanting silence to just sit with Piper all by myself, from wanting to laugh to wanting to cry, from being certain we have done everything we can to wondering if we have.  It's a good thing Jordan can't see the circles I am going in!  He is so good at helping me verbally process things but talking in these circles would not be good for either of us!

Where is the jumble of emotions coming from?  I think it is a combination of things.  I think it must have a lot to do with the normal grief process and the stages we are in, and it must have a lot to do with how Piper is doing right now too.  With Drew, we were really unable to process our grief and the decisions that we had to make at so many points until after he was gone because we were in a constant state of crisis.  With Piper, there have thankfully been very few crises.  I am not saying things have been easy, but if you compare situations, things have been very calm and there have been far fewer complications than we experienced with Drew.  We haven't gone from one event to another, one change to another and one obvious deterioration to another.  It has been a gentle slope down -- quick but gentle.  This gentle slope and absence of crisis has allowed us to be in a different emotional state.  It feels as if the grief process has begun, even though Piper is still here.  I am not sure if I am grieving the loss that seems inevitable at this point or if I am grieving the loss that has already occurred... the loss of the little girl I knew before she got sick.  I don't think there is even an answer to this, because it's probably both and more.  It puts me into an interesting place though, because as I hold Piper and kiss on her, snuggle with her and try to get as close as possible, I feel I can only get so close.  I scold myself, reminding myself to live in the moment but it is hard to feel that this Piper I am trying to treasure is the Piper I have loved.  I do enjoy each opportunity to sit with her and hold her more than words can say, but I think I miss her, even while I am holding her.  How can that be??!!!?  I am making an effort to love her in the moment and enjoy each one not thinking about the future, but that is a decision made with the mind.  My heart is more difficult to manage.

Piper is still doing alright all things considered.  I have been calling her my little Energizer Bunny - she keeps going and surprising many around her.  I am one of the many surprised by her, but I can understand those that are.  She has always done things her own way and I learned early on that I should not try to predict her next move.  I love that even now she is doing things her own way.  God is allowing us one more day to cuddle, one more day to tell her all the things we want to tell her, one more day for Peyton to read to her and to act like a true big brother with her, making her hands move in ways that make mommy nervous or holding her like she won't break!  These days are valuable to my heart!  My heart is grateful even now.  To everyone praying for our family, thank you!  Your prayers are working.  God's miracle might not be healing, but it certainly is evident in how we are able to feel in the middle of this.  We won't say healing is impossible at any point, but it seems He is working in other ways.  I am just grateful to be supported by Someone who works everything out for the good of those that love Him.  How that will look I cannot say, but I am confident in Him.  He is doing so much for us!

Sunday, May 6, 2012

Memorable moments

From the day of Piper's birth, we decided to capitalize on life as a family.  Drew taught us so much about living in the moment and making the most of every opportunity.  Looking back over his life, once in a while I wished we had been more intentional and that we had created more occasions to make memories.  It's amazing how you can go through a day, moving from one task to another and get to the end of that day and ask yourself, "What did I do today?"  I found the same applied to life with my children.  I could go through a week, moving from one activity to another, doing all the things a mother must do to run a household and even think I was stopping to spend time playing with the kids; however, when I looked back over the week, I couldn't think of anything remarkable about that week.  What would I remember from that week one month from now?  I wanted this aspect of life to be different after Piper's birth.  I wanted markers for our time with Piper (and Peyton!), events that I could remember from year to year, healthy or not.  I wanted to take an abundance of pictures to help me remember the details of moments but I wanted to create opportunities that allowed for the creation of a memory that I would be able to recall with vivid colour and emotion.  This would require time and intentionality but I didn't want to look back and wonder where time had gone.  I am so thankful we did this, even though I find I want even more now!  The pictures below are reflective of just a few of the moments I will treasure with Piper from the last year - I feel like I need to capture them here as just another step to try to crystallize them in my memory.

I should apologize to my boys, that I felt hindered enough by the expectations I had of what motherhood meant that I didn't allow them some of the experiences Piper had.  We tried to think outside of the box this time and allowed Piper chances live beyond the borders.

Experiences among the ordinary:

Daddy has loved Piper outside the box too and reminded me regularly that even if she was low in tone due to her condition, she was still physically capable enough to love physical play and "wrestling" with Daddy.  I loved watching them roll around together, usually tangled up with Peyton too.  

I wanted her to be able to really experience life and tried to bring things into her grasp that she might not otherwise be able to experience.  Her fascination with life gave me a new perspective on it and I felt the vibrancy of life through her!

Some of my favourite memories where those moments where we stopped long enough to make music together.  She loves to make music with any instrument and the sounds of her melodies will ring in my heart forever!

We made sure to capture time with extended family as much as possible and I am grateful to my extended family on both sides for participating with us in celebrating Piper and making memories.  Here's my sister Nicole with Piper in Montana - Piper was trying on Nicole's long, dark hair to see how she looked!

I remember wishing I had stopped more often to nap with Drew and decided the housework could wait this time around.  Irreplaceable moments!  Daddy caught us here.

If Piper heard the mixer go on, she insisted on being part of the project, whatever it was.  She usually had to have a measuring spoon or measuring cup in her hand and loved to smell everything that was going in, especially the spices and vanilla.  It was so neat the first time I realized she was actually trying to smell one of the spices I put near her nose.  Then she began to expect it!  Here we were making chocolate chip cookies and I was having a hard time getting enough food into her this particular day so I let her have a chocolate chip to see what she would do with it and she liked it.  (Another food I am sure I didn't give Peyton until he was a few years old!)

She found Peyton's juice box and chocolate chips and helped herself. 

I often wore her in the Bjorn with me while I was cooking, but it got a little interesting when her arms got long enough to start reaching everything I was working on!  There were a few messes along the way!

 Food Experiences:

We tried to live outside the box with Piper's food experiences too.  She preferred salty foods from the beginning and would not (WOULD NOT!) have anything to do with baby food at all so we had to get creative.  She wanted her hands on everything we gave her and often juiced it if there was juice to be squished out of anything.  Here, she was juicing a peach and loving it.  I'm not sure she ever differentiated between food and play!

Here we let her have a drumstick.  Meat was her favourite and she loved to gnaw on anything safe enough to give her.

I think I would like to tell my first time mom self that it would be ok to let my kids experience far more foods than just baby cereal and purees... She was constantly reaching for apples and I finally gave her one.  She LOVED it!  This was hilarious!

Experiences specifically for the memories:

When we went to Montana in the fall we took her to a farm near Mom and Dad's house.  We wanted to take Peyton through the corn maze there but we really wanted Piper to be able to see the animals.  She was mesmerized!  With both the corn stalks and the animals!

We took Piper Christmas tree hunting with us in Montana.  She loved being outside and it was such a beautiful day that I was able to let her touch and smell everything in our path.  She smelled pine sap, touched pine trees, played with snow until her hand was too cold to stand it, carried around a small branch, occasionally whacking me in the face with it, and tried to eat weeds (let her get a handful and she wanted to sample the flavour!  Quick intervention required!)

I don't think I had Peyton on a sled until he was at least two!  She loved this too!

Swimming was something I wish we had done more of!

 I didn't think Peyton would know what to do with markers so that was another thing that I waited on until he was older - little did I know.  She knew exactly what to do with them!  I now have some of the neatest drawings!  I had to take a few more precautions to protect her clothes or just plan to dump her in the tub when she was done, but there was no clothing item or mess that more important than the experience these art dates created!

Experiences untethered:

Even after we got to the Rotary Flames Hospice we wanted to give Piper as many chances to experience life as possible.  Music, art, sensory experiences, etc.  With Drew I felt so emotionally tethered, limited by the IV poles, the seizures, the uncertainty - it paralyzed me and I only realized in the last week or two that these experiences would still provide value to his life.  We have been able to provide these for Piper as long as possible.

(You might think she is asleep here, but she was touching her toes to the guitar, on - off - on - off, even with her eyes closed.)

Some humorous experiences:

We let Piper drive without a license... ok, the car was turned off, but she really liked the idea!

We dance and laugh like crazy every chance we get!

Capturing these moments will enrich our lives forever!  It has been fun to view life from the perspective of where the next memorable moment will come from rather than letting life happen to us and getting lost in it! 

Saturday, May 5, 2012


I cannot believe it will be five weeks since we last heard Piper's giggle and saw her scoot.  Time has flown and crawled at the same time, and it stops when we think about losing her.  It crawls when she seems uncomfortable.  It flies when we snuggle with her and wish for more.  The doctors suggested that her time might be short a few times over the last few weeks and she continues to surpass their expectations.  Jordan and I have prepared ourselves (as much as one can) to let her go and then she turns around again.  It is a bit of a yo-yo game emotionally.  We never stop praying for a miracle, but we also pray that if that cannot be that God will carry us, that He will be gentle to Piper and that He will provide peace.  I cannot describe where we are at emotionally except to say that we spend much of each day at peace.  We laugh.  We love.  We celebrate.  We cry.  We groan.  There are so many emotions in a day!

My favourite moments today:  Watching Piper enjoy her bath and then snuggling with her afterwards - there is nothing like kissing a baby's head with that soft, just-clean hair.  Watching Jordan nuzzle her cheeks and adjust her position until she was as close to him as he could get her so she could hear his heartbeat and feel him breath.  Listening to Peyton giggle uncontrollably as my mom tried to walk around the room with him attached to her leg like a leech.  Sitting here now writing next to Piper, watching her sleep so peacefully.

Piper is comfortable and spends most of her time sleeping still.  Her awake times are very short, about 5 minutes and to the untrained eye, it would appear she is still asleep.  She might move her hand, she might make a sound or two, but she most often just moves her eyebrows or moves her mouth a bit.  She seems very content most of the time, but does not like to be awake much.  She whines when she is too awake but thankfully can usually be settled by an adjustment of her position or a snuggle and a song.  I don't know why she whines when she's awake but it doesn't seem to be pain bothering her because it doesn't bother her at all while she sleeps.  It has been difficult for me to imagine what her experience of this must be.  I hope she doesn't struggle with it, that it doesn't upset her emotionally.  The doctors are quick to remind me not to attribute adult emotions to her but I find myself wondering how she must feel in terms of how I imagine I would feel.  I hope she is content and feels our love for her.  I try so hard to provide comfort for her, I hope it makes a difference in her little mind.  I pondered this last thought recently and realized that as much as I am hoping she will feel my comfort and accept it, God must be thinking the same of me many times over.  As Piper removed my hand (intended for comfort) from her stomach today I thought, "Do I ever remove God's hand of comfort?"  My goal was her comfort.  What is His?  Will she accept it?  Do I?  Piper my love, you are teaching me so much!  I love you!!!

Tuesday, May 1, 2012

Piper's Story - the moment of change

Piper's Story - Part 2:

I left off Part 1 by describing our response to Piper's diagnosis, but didn't delve into the course her disease took so I will try to put that into words here.  Not for the sake of detailing her medical history, but to try to share both what our journey has looked like and how God has blessed us through her personality and tenacity!  I may repeat some elements of the story that I have already posted about but if I do, please overlook the duplicity for the sake of continuity!

From day one Jordan and I prayed Piper would be strong and healthy.  We also prayed that if she would follow another course, she would be strong and healthy for as long as possible; if she was to be sick, we prayed that her disease course would be swift and that God would be gentle and merciful.  We shouldn't be surprised that He is answering so completely.  Piper missed some of her physical milestones by about 6 months, but she was meeting all other milestones and exceeding many of the social ones.  She seemed far more socially capable than her age would have suggested she should be and her favourite pastimes were ones that also seemed more appropriate for a child older than she.  She would sit in her car seat from 5 months and read books to herself.  I didn't go anywhere without a bag of books.  She would turn the pages by herself and preferred books to just about anything.  I remember driving Peyton to school one morning and Piper was starting to squirm.  I asked her if she wanted a book and she reached her hand out to the side of her car seat, hand open and waiting!  I smile now just remembering how proud I was in that moment.  Silly mom, but those moments where you realize how capable your child is and that they understand you on many levels just continually left me in awe.  She exceeded our expectations in so many ways!

When we received Piper's diagnosis on September 13, 2011, the first week was surreal.  It felt like a fulcrum point, where we sat on this fine tip and had to decide which way to go.  Do we fall apart?  Do we yell and scream?  Do we cry?  Or do we rejoice over the privilege that we have known this little girl and that she has been well for so long?  Do we dance more, laugh more and live more?  The decisions we had to make were so simple and yet so difficult.  A parent should never have to hear that they will not be able to dream about their child's future.  That they will not be able to see them grow up.  We worked through a lot of emotions that week and the groundwork we laid has helped ease the difficulty of the journey.  With Drew, we were constantly grieving a new loss.  The onset of each new symptom and the uncertainty of his diagnosis left us in a state that varied dramatically between confusion and hope and tossed us back and forth frequently.  With Piper, we had a diagnosis and though the course couldn't be certain, we knew it was terminal according to the medical world.  In that first week with Piper, we could grieve everything that we grieved over months with Drew.  Ug.  I don't want to have a  week like that ever again.  It was hard to keep moving and not to be hyper-vigilant with Piper.  It's like finding out you have a disease but not knowing when your symptoms will start, and trying to live like you don't so you don't just stop living then!

We tried not to look for symptoms and attempted to treat Piper as normal as possible.  For the most part it was not too difficult, but her diagnosis hung over our heads, if not in our conscious states, in our subconscious states.  I found myself unable to plan for her future.  I could not go buy clothes for her in any size but the one she was in.  Where others would be planning for the next season and buying clothes on sale for next season, I was thinking, "What outfit do I want to make sure she gets to wear?"  I longed to dream about braiding her hair and putting it into ponytails, but wouldn't allow myself that luxury.  Instead I made bows like crazy for little wisps and there were very few days she didn't have some sort of bow to hold her little sweeps of hair.  We knew that sleep and nutrition were important for her so we tried to keep on top of these but not become too protective because we knew it would only feed anxiety.  So many times I had to remind myself that if she was going to get sick that it would only be a matter of time anyway, regardless of what I did, in order to allow myself the freedom to live and move in a day without fearing that I might do something to cause her symptoms to start.  It really came down to living in the moment, not allowing room for any anxiety.  I told myself daily, "All I have to do is love Piper.  If I just focus on loving her, I will be able to handle any moment.  I will be able to make the right decision in that moment because I love her."  That was the best way not to fear her future, or any crises that might occur.  I would be able to cope with them as they came in that moment, because my love would provide what was best for her in that situation.  I hope I can take this practice forward as it served to richen my life and my experience of her so much!

There were some early signs of the disease such as inability to gain weight, low muscle tone (which led to those crazy splits!), and some missed physical milestones, such as sitting, crawling, etc but none of these required treatment.  There were other things that occasionally made us nervous but we had to determine if they were just normal baby things.  There was nothing to do but wait until something showed up that we could treat.  Jordan and I had determined from the beginning that Piper's course would be different.  Our goal was her comfort instead of treatment with a hope to cure.  Here we deviated drastically from the course we followed with Drew.  There would be no investigation, no trial treatments, as few drug switches as possible and as few interventions as possible.  We knew there was still no cure, and not even a remote possibility for treatment on the horizon.  We had not given up hope for a miracle but we knew medically there would be little that could be done.

Piper surpassed our expectations physically as she passed month after month, 5 months beyond the time when Drew began to show symptoms.  By 12 months, she was learning how to scoot.  She had the cutest commando-crawl!  She could get just about anywhere but would go slowly and intentionally.  You could tell it took a lot of work, but her determination exceeded her physical capability and off she went!  At 13 months, she decided it was time to sit on her own and those adorable splits became part of our day.  Every time she wanted to sit, she would spread her legs wide and push up to sitting, and vice-versa when she wanted to go somewhere.  She tired more quickly than most children her age and I would find her laying her head on the ground to rest after moving a few meters.  I don't think there was a single time she would travel to some destination around the house where I didn't find myself rooting for her, wanting to both cheer for her and to do it for her.  I knew I couldn't do it for her and that letting her exercise like that would possibly extend the lifespan of the good mitochondria she had, but it was so hard to watch her work so hard!  The first time I went in after her nap and found her sitting up I nearly bounded out of my skin to the crib and jumped with excitement and pride, clapping the whole way!  She must have wondered what she had done to deserve such a response... what's up with this lady???  I cannot begin to describe what it was like to parent her, but it was constantly a source of joy and parental pride. Talk about celebrating accomplishments!  Oh, I can feel the joy just thinking about it and my heart swells.  What a treasure she has been!  And lest I allow any to think Peyton was left by the wayside, I have to say that I enjoyed him more this last year too!

We hadn't told Peyton about Piper yet, thinking we would tell him when it seemed she was getting closer to exhibiting a visible symptom.  We tried to prepare him in other ways by having conversations about Heaven, about God's amazing love and providence, and about how our lives may take different paths than we want them to sometimes.  I don't know if there was really any way to prepare him.  When we made it to March without any problematic symptoms we found ourselves in two places of thought at the same time.  We were aware our world could change in a moment and found ourselves wondering when it might begin.  Would it be in the middle of the night?  In the pause of a day?  In the bustle of activity?  But as time continued to pass event free, we began to wonder if it might be possible that we could have years with her.  Whatever the case, she was good now and we wanted to seize every moment.  We decided at the last minute to take a trip to Vancouver Island, BC, for Peyton's spring break.  It wasn't far away, only a one hour flight, and it was close to good health care if we needed it for any reason.  She was doing so well it seemed reasonable.  We thought it would be a great way to relax as a family and our real motive was to try to create a memorable family experience as it could possibly be the last one we could share.  We also planned to tell Peyton then, in a place where we could surround him with love and support without any other distractions.  Ah.  Hindsight.  But no regrets.

We arrived in BC on Sunday, March 25, before lunch.  Piper had been a great little traveller.  There was nothing unusual that would have given us cause for concern.  Peyton was so excited to get there.  We got to the condo and unpacked while the kids played on the floor together.  Piper took a nap and we decided to go for a walk when she woke up.  The condo we were staying at is right on a cove, and near a little recreational airstrip/marina.  We loaded the kids up and went out to enjoy a beautiful sunny afternoon, one of the most remarkable days we have ever enjoyed in BC.  Piper was in her element.  She didn't let one detail of the walk escape her notice.  Every little plane that took off or arrived, every dog that walked by and every bike that rolled by us gained her attention.  We stopped by a little park to play and she seemed to revel in the experience, while Peyton ran in circles trying everything at least 3 times. I took Piper a little further to see the cove from a different view and in search of spring flowers.  We found the most beautiful yellow flowers blooming in some brambles off the path.  Beauty in unlikely spots.  She refused to sit back and relax in the stroller, she had to sit forward, on the edge of her seat the whole time.  I can't describe how she could be both eager and yet peaceful at the same time, but her mood that day was contagious.  What an incredible memory.  Peyton and Jordan spent almost an hour walking the beach while Piper and I explored life!  Amazing.

When we got back to the condo, we made a quick trip to the grocery store and then back to the dinnertime routine of trying to feed Piper something she wouldn't want to eat or wouldn't eat enough of.  After her normal hour in the high chair and at least 10 different foods, I figured she had eaten enough so I let her out to play for a few moments while I cleaned up.  We got the kids ready for bed and I went to put Piper to bed.  I dressed her in her jammies and after cuddles and prayers put her to bed.  Not unexpectedly, she protested.  New location, long day, new smells, lots of new experiences in her day, strange sounds -- who wouldn't have a hard time settling?  I didn't find it hard to cuddle her to sleep at all.  After she fell asleep I put her in the playpen.  There was nothing unusual.  My love tank was full from a great cuddle.  After an hour, she was awake again, crying for mommy.  She had been teething so I figured it must have been her teeth bothering her that woke her and went in to cuddle her again.  It was not unusual for her to wake up once or twice before our bedtime, but part of me thought it was strange that she seemed like she was sobbing when I went in because she hadn't been crying hard or for longer than a minute before I went in.  Looking back, she might have been having some seizure movement.  The thought crossed my mind that the movement I felt could be something of the kind, so I held her longer and put my senses to work.  Was there anything unusual?  Any strange movements?  Anything new?  Just the lightest of sobs.  And only for moments.  Easily explainable.  The mom in me wanted to attribute it to normal baby reactions.  The Drew-shaped parent in me was not so easily settled.  What if?  I didn't want to overreact so I held her for longer than usual trying to settle my uneasiness and make sure it wasn't anything to be alarmed about.  It stopped after moments so it could have been sobbing.  She fell asleep and I held her for at least 1/2 hour until she was deeply asleep and then I reluctantly put her back to bed.  I went out to read a bit longer and only a short time passed when Jordan and I heard a strange ticking sound.  What was that?  Where is it coming from?  We were only a room away, but we had the monitor on to make sure we could hear her.  Jordan and I realized at the same time that it was coming from the monitor.  Was there something ticking in the other room or was it the monitor making that sound?  Seconds of thought.  Then a flash of fear.  Oh no.  If it was Piper, that was not a normal sound.  I ran in the other room.  Sound - unusual.  Where?  It was her.  I was feeling in the dark.  What am I feeling?  No!  She felt strange.  Realization!  Seconds passed.  Before I had even confirmed my fear, before the lights were on, but after life had paused, I heard myself yelling, "Jordan!"  Seconds.  He knew.  He called 911 while I held onto Piper as if I could stop time, stop reality.  I couldn't put her down.  I needed her close. Needed her to know I was here.  That I was trying to do everything in my power to help her.

The ambulance was there within minutes.  Piper and I were off.  Starting on a journey I had hoped would never become reality.  There was never a moment where I was scared somehow - Someone greater had already begun to work.  He had been preparing us for a long time and it quickly became apparent to Jordan and I that He was putting so many things in place to make the best of the situation.

Life changed that night.  Again.  What would the path look like?  We would be climbing a mountain blindfolded, waiting for guidance for most every step.  Some of the path would be smooth, but some would be steep and bumpy, and most certainly every step would require the assistance of a Guide who could see more than we were able to.  We are still climbing this mountain today and while there are challenging parts of the climb, there are also many amazing views from this vantage point.  We have our sad moments, but we also have moments of comfort, of joy, of peace and even of happiness.  It is a rainbow of emotions - there is no black and white here.

I will try to pick the story up from here later, but I want to go cuddle with Piper some more.  Piper continues to amaze us and sends our emotions into a spin regularly.  We shared a wonderful night with her last night.  It seemed as if she was going to put her dancing shoes on Sunday morning but she rallied again and had a very calm day all day yesterday.  She enjoyed cuddles of love from many of us and last night Peyton asked if he could snuggle with her while he was going to sleep.  Why would we say no to that request?  We decided it was worth it to arrange her limp body next to his for some much needed snuggles.  He fell asleep as close to her as he could get it.  We thought we might move her to her own bed after he fell asleep but they were both so peaceful that we didn't dare separate them.  I snuggled in around her and fell asleep breathing her in.  Jordan stayed up for a while, checking in occasionally to make sure all was well, exerting his protective love.  After a while, he joined us too.  (Thank goodness for king size beds!)  We all slept deeply, even if some of us slept in a state that was listening for the slightest change in Piper's comfort.  I woke at 6:30 and spent an hour watching my family sleep, constantly rearranging themselves within each others' space.  What a treasure!  I will value this memory for a long time.  

Piper is very weak now and can only move her hand with quite a lot of effort.  She does not open her eyes any more, but she is still somehow aware of us it seems.  I try to listen for changes in her breathing that might indicate how comfortable she is, but this is a language I am not proficient in!  She is very comfortable as far as we can tell and we are doing everything in our power to make sure we are meeting her needs both for emotional and physical comfort.  Please pray that we will know the right things to do for her at the right moment.  I pray her little soul is full from our love and full of comfort from knowing God's nearness.  Thank you all for your prayers!