Remnant of a Stolen Year

My hero

Every day I wake up, drag myself out of bed to feed a hungry baby, unclog my head with enough caffeine to remember what meds to give Michaela that morning, stop her feeds that have been on all night to see if she will get hungry for breakfast, and the day continues through each task without any room for a mama to take a moment to consider her other options.  I could stay in bed and let the baby cry, the feeding tube beep, Michaela get sick, Madeline grow too old for her age, and meanwhile just bury my head under my pillow and refuse to do anything about it.  But that's not what mamas do.  On the good days our husbands bring us our coffee first thing and we plow through the day in a series of check marks.  I'm always surprised that somehow just getting out of bed and doing what anyone else would do is considered heroic or amazing.  When the truth of it is that I don't have another choice.  It's just what mamas do.


And now it looks as though day after day after day after day has eventually turned into a full year.  Michaela's one-year anniversary has arrived and we are still in the thick of the battle with more wounds than we care to count.  SHE has more wounds than we care to count.  As the hardest, most exhausting, most terrifying year of my life comes to a close I am being haunted by what has been stolen from us this year: normalcy.   We've lost a year in the blur of sleep deprivation, survival skills, and (yes I admit it) a good deal of fear.  And yet, although the robber has been here and the house is stripped bare, we still possess the most precious jewel in the world ... our daughter's life.  That is the remnant of our stolen year.  And I truly don't care what I have to do each day as long as I get to keep it.

The Stars are Brightly Shining

Merry Christmas!  Despite maneuvering Michaela's low counts and rigorous chemo schedule, we have been enjoying the holidays so much this year.  Each moment together as a family is precious; every smile makes our hearts overflow.  We've always celebrated Christmas with joy, but this year takes the cake because of all that we have faced leading up to it.  Here's a hodgepodge of some of our fun together:

Reindeer and Elves

Singing in the church Christmas concert

(Michaela is at bottom left, 
Madeline second from the right on top)

Carousel fun!

Christmas Tea

The star 

Instead of sending out a Christmas letter with an update of our lives, I've decided to let someone else do it better.  You all know what this year has been like for us; the hardest part is making sense of it all.  Looking back through the months in retrospect I can see the beauty in the ashes.  There IS something magnificent happening in our lives in the midst of childhood cancer.  It is the same Magnificence that said the word and the Light of the World was birthed into humanity in the darkest of places.  And so even now, even in this, the stars are brightly shining.

THE BRAVE LITTLE SOUL by John Alessi  

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."


Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.

In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

"Grant me, O Lord, a sunny mind, Thy windy will to bear!" -- Emily Dickinson

November has been a month of contrasts:  From Birthday celebrations to hospital visits; from family gatherings to secluded snowy days.  Here are the highlights of the past two weeks:

Madeline's birthday play:  For her party, Madeline decided this year she wanted to produce a play in which many of her good friends would participate.  Madeline worked hard to write the script, design the set, create programs, and transform our home into a theater.  We asked her friends (and daddy) to come in costume and everyone participated in making her play a success.

The first snow:  The next day it began to snow.  And it snowed.  And it snowed. And it snowed.  Our first snow in our new house turned out to be amazing fun.  We now live at the top of a big hill, perfect for sledding!

Madeline's birthday:  Royal treatment was the theme of the day, as Madeline received breakfast in bed and a night in a downtown hotel with mom, dad and Michaela.

Thanksgiving:  We filled our home with family as we joyfully celebrated just how much we have to be thankful for this year.

Hospital stay:  The day after our Thanksgiving celebration, Michaela had to go back into the hospital for fever and low counts.  Thankfully, it was a quick 2-night stay as the doctors discovered she had a treatable sinus infection.

Kids Marathon:  The same day, Madeline and her friend Isaac participated in the Seattle kids marathon.  They each logged 25 miles on their own (with parental companionship) in the previous weeks and ran together the last 1.2 miles on the day of the race.

And now on this last day of November contrasts, I am mindful of the light in the dark, and I am reminded of the poem entitled, "November" by Emily Dickinson:  "Grant me, O Lord, a sunny mind, Thy windy will to bear!"

5 Little Women

We had an amazing time together with 5 Little Women in the house when Tori, Matt, June and Jo came to visit for the weekend.  Although it was short, it was the first time we had all spent time together since both the new babies were born and since Michaela's diagnosis.  We laughed, we cried, we held each other tight.  Mostly, we just soaked up the time and wished it to go more slowly.  Here are some highlights:

with Grandma Esther

Tia Tori & Uncle Matt snuggles

Yaya & Bapa introduce the babies

Me & the big 3

Madeline's Vision

First let me apologize for letting so much time pass without updating this blog.  I have to admit that I've been stuck in the most magnificent pity party you can imagine.  This is hard.  No matter how I try to sugar coat it or praise God in the midst of it, the hard is still hard.  My daughter has cancer.  She has no hair.  She has a feeding tube in her nose.  She moans and cries because her body hurts in ways she can't explain.  On the good days it is hard.  On the bad days it is beyond hard.  Over the past two months we have been in-patient in the hospital twice, been through two CT scans to check a strange growth on her lungs, explored countless changes to medication schedules and feeding schedules, endured the heartbreak of friends who are walking harder roads than we are, and the list goes on and on.  So please forgive me for my silence and witness my climb out of self-pity and into the light of hope again.  For there is so very much to be hopeful about. 

As I washed the dinner dishes tonight, girls in bed and asleep early for a change, I reflected on why I have been so focused on the hard.  Exhaustion, complacency, lethargy all contribute.  Mostly I haven't felt God in this with me for a while now.  What a ridiculous thing on which to ascribe this despondency.  My God, the very one who brings light to the world, hope to the hopeless and power to the powerless is not shining it brightly enough for me, apparently.  Then a funny thing happened.  Madeline wandered into the kitchen, bleary eyed and half asleep.  "Mom," she said, "I just saw the most amazing angels."

Before I go on, I need to say a few words about Madeline.  She has been, for lack of a better word, a trouper this year.  She has lost all sense of normalcy, given up countless hours of time with her parents and sister, watched her best friend in the world fight leukemia and all the horrible effects that come with it, and she has handled herself through this year with an incredible understanding far beyond her years.  She is also our highly sensitive child, who since the age of two has seen things spiritually that seriously blow us away.  When Madeline walks into a room and says that she's seen angels I immediately get goosebumps and have to sit down.


Her face is sleepy and glowing with a peace that passes understanding.  I draw her close and ask her what she saw.  "Mom, there were the most beautiful angels in our house.  They started in Michaela's room and they hovered above her bed holding baskets of fruit.  They poured the fruit over her and her hair started to grow back.  Her feeding tube started to disappear.  She had color in her cheeks again!  Then they went through the rest of the house with their fruit, and finally ended up in my room.  They emptied the fruit over me and I tasted it, mom!  It tasted better than anything I've ever tasted ... kind of a weird cross between peaches and red peppers.  It was so good!"  She snuggled into my arms and I looked at Jon.  We both had tears in our eyes.  

I have to say that I don't have a clue what this means for Madeline.  I'm sure she was in need of some encouragement tonight or there was some personal reason God wanted to bless her with this prophetic word.  I do know what it means for me, though.  Only a God who is deeply invested in relationship would choose our dreaming 7-year-old girl to give a vision of hope to this weary mom.  He firmly told me tonight that He is here in the midst of the hard.  The weight lifting from my shoulders is liberating.  As I kissed Madeline goodnight I turned into the light of the kitchen and felt free to believe that it will all be okay.  I've been showered by angels tonight and I've been told that the taste is fabulous.

Top 10 Things I Never Thought I'd Hear my 5-Year Old Say

You've asked for it, so here it is again (as originally posted on Facebook):

Top 10 Things I Never Thought I'd Hear my 5-Year Old Say

10.  "Mama, I need some oxycodone!"

9.  "Let's snuggle.  But don't touch me because it hurts my skin."

8.  Upon returning home after a family dinner out at a restaurant she requested, and eating half her dinner before vomiting it all over the floor, she said with a laugh, “Well, that didn’t work out very well!”

7.   Gloating to her sister, "I don't have to eat broccoli because I already get it through my feeding tube."

6.  (Overheard between M and her 3-year-old cousin): “Michaela, why don’t you have any hair?” “Oh, it’s just a side-effect of my medicine.” “What’s a side-effect?” “Um, I don’t really know, but it makes your hair fall out.”

5.  "Maybe Emily has a diaper rash because she doesn't have any platelets.  We should give her a transfusion."

4.  "Mommy, next summer can I go to cancer camp?"

3.  "We should go to a movie while my counts are up."

2.  "Mommy, spending the day with you at the hospital is not my idea of 'special mommy time'."

1.  "I wish I didn't have leukemia!"  For a girl that's had virtually no self-pity, this was refreshing to hear!

As you can see, we are coping as best we can with all the changes to our lives since January.  Humor, honesty and love are the biggest themes we live by these days.  Michaela's health is still very precarious and we just take each day as it comes.  God continues to bless our family with an incredible support system as well as the following summer updates:

First, we were able to take a fabulous 5-day vacation to the Oregon coast.  A few pictures follow below:

Second, we've moved into a new home that has made life so much easier.  We are now much closer to Childrens' Hospital and we have much more space to spread out.   For the first time since we married, Jon and I have a master bathroom, Madeline has her own room, and we even have a separate "school room".  Pictures to follow on a later post, but for now we are working on getting unpacked and getting our old house ready to put on the market.

We feel so blessed by the amount of help we received with this move.  Thank you to all who made it possible, from helping with packing weeks in advance to showing up on moving day to pack the van.  We could not have accomplished such an event in this season of Michaela's care without an amazing amount of support.  We are so grateful.

The 1,000 hats of Michaela Leslie Werner

Here is a showcase of only a small portion of Michaela's beautiful hat (and wig) collection.  She is so thrilled to have so many options from which to choose every day.  Thank you to everyone who helped to contribute!  As you can tell, she is NOT a fan of having her picture taken, but she has tolerated me well.