Thursday, December 29, 2011


3 months today. 

This morning I went to the chiropractor.  I treat him like a therapist.  He asks me how I'm feeling (referring to my neck or hips) and I tell him that I'm tired, that I don't feel like running, that I lack motivation.  Today he asked me what my new year's resolutions are..."to try to be happy" I said.  He is a kind man.  He listens, sometimes we talk about Jonah, and then cracks my neck in a horrifying way.  I always feel a little better emotionally and physically when I leave.  It is amazing to me how our bodies are tied to our emotions.  Right after Jonah died I found that I was so sad I couldn't eat, and I felt like throwing up all the time.  That feeling returned to me two nights ago.  I felt overwhelmed by grief, by self-pity, by the world, by the subtle reminders that in an instant my life transformed from joyful to devastated.  I felt out of control.  

Grief is full of metaphors.  Some have said its like sinking in quicksand, like bubbles coming to the surface, like a roller coaster, like climbing a mountain.  In this third month it feels to me like learning to walk a tight-rope.  Each step forward is timid, unsure.  There is fear and adrenaline.  I am constantly seeking balance.  But how do I balance remembering my sweet Jonah, while moving forward?  Each step forward seems like a step away from him, from my life with him.

I look at his picture on our fridge and stare at his beautiful blue eyes, and at the same time I feel the need to look away.  His eyes, for me, carry such intense pain and joy.  I long to remember his smile, his laugh, his hair, his dimples, the way his body rested on mine.  But when my mind drifts to these memories, they are followed by a memory of the panic I felt when his body was limp in my arms.  How do I balance remembering and forgetting? 

There are days when I cry a lot, when I search his room for his smell, when I read the journal entries of his short life, when I talk of him joyfully.  Then there are days when I shut down.  I can't talk about anything, especially Jonah.  To me these emotions feel like the rapid sway of a tight-rope under my balancing body.  My fate lies in my ability to regain my balance, to stay centered.  I try to gain control, and I fear over correcting and falling. 

I am trying to find balance in slowing down my pace and in being deliberate in my steps.  I breathe deeply, and try to focus on the things that are within my control.  I have never been to alcoholics anonymous, but the serenity prayer runs through my mind. 

God, grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And wisdom to know the difference.

If only my heart and mind could find the balance of this prayer.   That would be beautiful, peaceful.  Instead I find myself feeling more like Frank Constanza yelling "Serenity Now!"  A little frenetic.

I guess I will have to accept the frantic sway of the tightrope until I learn to balance.  I will make subtle moves, simple steps.  Maybe someday it will become second nature to me.  Until then I will continue to miss Jonah deeply, to be blown off course by the slightest breeze of memory, to freeze momentarily in fear, and to slowly move forward. 

Monday, December 26, 2011

Christmas Gift

Shortly after Jonah died Jordan and I realized that we didn't have a family picture.  In Jonah's short life I took tons of pictures.  I have hundreds of pictures of Jonah by himself, almost as many pictures of Jordan and Jonah together, and quite a few of Jonah with me. But we only have a handful of pictures of the three of us.  The few we have are blurry, or one of us is not facing the camera.  The majority are of us exhausted and unkempt shortly after Jonah was born.  Despite their imperfections these pictures are precious to me.  Even though I have these informal pictures of my family, it broke my heart that we didn't have a beautiful photo to remember our time together.

This Christmas we received the most amazing gift from Jordan's brother Quinn and his family.  They gave us two framed pictures.  The first was a photo of Jordan holding Jonah.  It is so sweet.  The second is an amazing picture of my sweet family taken at Jonah's baby blessing.  When I saw it my heart was overwhelmed with gratitude.  I just wept and stared at the beautiful moment Quinn captured for us over a year ago.  I am so grateful. 

I received so many thoughtful, and beautiful gifts this Christmas.  But this picture, this physical reminder that we were once and will always be a family, is the best Christmas gift I have ever received. 

Friday, December 23, 2011


I really miss holding Jonah each night and singing to him.  I don't have the best voice.  My brother will tell you that I often change key mid song.  When the notes get too high, especially with children's songs, I just stop singing, then resume when it comes back to an acceptable range.  I have a horrible memory for lyrics, and often repeat myself.  Most would not describe my singing as beautiful, but it always felt beautiful when I sang to Jonah. 

I sang to him even before he had his hearing aid.  When he was a newborn and crying I would hold his soft cheek against mine and sing "Baby Beluga," hoping the sound would travel through our connected bodies to his perfect inner ear.  It always soothed him. 

At night he would drink his bottle and play with my hair while I sang to him.  I sang him the same songs over and over: You are My Sunshine, Baby Beluga, I am a Child of God, I Know My Savior Loves Me, and He Sent His Son.  I often thought I should sing him something new, but I could never think of anything else to sing.  In all my years of teaching, not to mention being raised by a preschool teacher, it surprised me that I could not think of any other songs.  So these were our lullabies. 

In the hospital, as I held his body, I sang him these songs again.  My singing was stifled by tears and anguish, but I still sang to him.  It was beautiful.  The lyrics found new meaning to me as I sang... 

You are My Sunshine
You Are My Sunshine
My only sunshine.
You make me happy
When skies are grey.
You'll never know, dear,
How much I love you.
Please don't take my sunshine away

I am a Child of God
I am a child of God,
And he has sent me here,
Has given me an earthly home
With parents kind and dear.
Lead me, guide me, walk beside me,
Help me find the way.
Teach me all that I must do
To live with him someday

I Know My Savior Loves Me
I know He lives!
I will follow faithfully.
My heart I give to Him.
I know that my Savior loves me.

I will never forget the sacred sweetness of singing to my baby Jonah one last time.  Lately I have been thinking about Christmas and one of these beautiful lullabies is floating around my heart and mind, He Sent His Son.  Those four words are so significant to me this Christmas.  John 3:16 reminds us, 

For God so loved the world, that He gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life. 

This is an amazing scripture.  The phrase that He gave His only begotten Son pierces my heart, as I think about losing my only son.  I am grateful for the promises of Christmas.  I am grateful for the hope of everlasting life.  I am grateful He sent His son.

At the end of the song it says...

What does the Father ask of us?
What do the scriptures say?
Have faith, have hope, live like his Son,
Help others on their way.

What does he ask?
Live like his Son.

I am trying this Christmas season to have faith, to have hope, to live like His Son, and to help others on their way.  So far it has been a season filled with simplicity, love, and beauty.  I hope you can find peace in this simple lullaby, and have a meaningful and merry Christmas! 

Wednesday, December 21, 2011

A Better Place

I am hesitant to write this post.  I do not want to offend any of the kind and wonderful people who have tried to console Jordan and I since Jonah died.  It is so difficult to know what to say when someone dies.  I totally get that.  On the other hand I want to be honest about this experience.  I want you to understand, even superficially, how it feels.  So I will write.

Tonight I find the phrase "a better place" bouncing around in my brain.  I have struggled to discern what I feel when this phrase is used, because it is used often. On the one hand I have to believe that Jonah is in "a better place."  The alternatives are unacceptable.  My heart would plunge into despair if I believed for a moment that his existence ceased, or that he could be somewhere worse.  My hope for heaven and reunion is what keeps me moving forward.  It should bring me comfort to know that he is somewhere without pain, without heartache, full of love and beauty.  Sometimes it does. 

But usually when I hear people say that Jonah is in a better place, my immediate unfiltered thought is "what place could be better than here in my arms, in my home, in our family."  I still miss him so much.  My mind cannot fully comprehend "a better place".  There are days when the phrase makes me feel selfish for craving my little one. 

Please understand that I am grateful for the kind words spoken, for the difficult effort, the service given and the shared hope of "a better place."  But sometimes it is easy to rely on common phrases in difficult conversations.  I have relied on those phrases myself.  I am especially grateful for friends and neighbors who come without too much explanation or consolation, but rather listening ears and open hearts.  They allow me to be here, in this difficult place, without hurrying towards eternity.

Tuesday, December 20, 2011


I am going to be totally honest with you.  Sometimes when I read or hear about other people's challenges in life it irritates me.  Most of life's day-to-day problems seem insignificant to me right now. The most selfish part of my soul wants to tell people that they don't understand how hard life can be. I want to say that the challenges they face are child's play and that my pain can easily trump theirs. I realize how unfair that feeling is. 

The view from our backyard.  Worth the wait!

As I've worked through this irritation I have been reminded of my own meltdown moments.  The times when I thought I was facing enormous obstacles, difficult decisions, and uncertain futures.  At the time life felt totally overwhelming.  Most of these memories are full of uncontrollable melodramatic crying. 

In college I remember sobbing in my dad's office when I felt like I should break up with a boy that I thought I really liked (we only dated for three weeks).  A year later I found myself sitting at the bottom of the stairs in my parent's house, with my head on my sister's lap, weeping because I told Jordan it was over (obviously the break-up didn't take).  When we were newlyweds I cried because I thought we would never find a house and we would end up living in my mother-in-law's basement forever (we lived there for just over a year and finally found the perfect house in a great location).  I was devastated when I miscarried my first pregnancy.  And then I cried because it seem to take so long to get pregnant (only 9 months).  When Jonah was born and diagnosed with Treacher-Collins Syndrome I fell apart in the shower because life seemed so unfair.  I was so worried about the challenges my baby would face, and how it would affect our lives (little did we know how much beauty and light he would bring to us).  This little recap makes it seem like I cry a lot...oh well. 

The day Jonah died I learned what it meant to cry. I discovered the true nature of sorrow.  All of life's previous challenges seemed insignificant, like little pebbles compared to the giant boulder I now carry.  Each day I hear myself saying "this is too hard" and "I can't handle this."  But then I remember that I have heard these words come out of my mouth before.  I have doubted my capacity to manage challenges that now seem so simple.  And each trial has been followed by unimaginable blessings of beauty and abundance.  I am still here, I have been strengthened by my trials, and I have had happiness and joy that I never anticipated.

So I want to apologize.  I am sorry for judging your challenges.  I know that life can feel ridiculously hard, no matter what stage you are in.  All of life's small and medium challenges prepare us for the big ones, increase our capacity.  It is all relative.  I will try to remember that you are facing the most difficult trial of your life so far, and there is no need for comparison.  As I reflect I am grateful that my ability to cope has increased, but that knowledge comes with fear of the future.  I wonder what challenges lie ahead, and hope that losing Jonah is not preparation for something harder.  I hope this is as hard as it gets, and at the same time wonder what unknown strength lies within me.   

That which we persist in doing becomes easier - not that the nature of the task has changed, but our ability to do has increased.  Ralph Waldo Emerson

Thursday, December 15, 2011


As Jordan and I walked away from the hospital the day Jonah died I remember being afraid.  I had just experienced my greatest fear and yet I was hesitant to go home.  I didn't know how it would feel to be in my own house, to be with Jordan, to be without Jonah.  I wondered if it would be painful to be surrounded by his things. I imagined a suffocating silence, a constant reminder that he was gone.  It was horrifying to separate our bodies from Jonah's and step into this new uncharted territory.  

As soon as we got home I gathered up Jonah's blankets and his favorite monkey. His smell became like a drug to me.  I crawled into bed, and stayed there for the rest of the afternoon.  Afternoon faded into  night.  All I could do was cry.  No. Wail.  My sobbing left no room for the silence I feared. 

For the next week we were surrounded by friends and family.  We talked, we cried, we listened, we remembered.  As soon as one person would leave, a new person arrived.  It was truly a blessing and made those first difficult days go by more quickly.  But eventually everyone returned to their own lives.  Back to work, to school, and to families.  I soon found myself surrounded by the silence of my own home, the experience that terrified me.  Yet when all my distraction disappeared I discovered the silence was so beautiful.

In the silence my mind wandered to memories and moments I had forgotten.  I pondered my purpose.  My thoughts found clarity.  I read.  My tears flowed.  In the silence I tried to ask God real questions and seek answers. 

Earlier in my life I think I would have filled the silence with music, television, or conversation.  I was one of those college students who would say "I study better with the T.V. on."  Definitely a lie I told myself.  Silence seemed like the poster child of a uninteresting life.  Things are different now.  I want to guard my silent moments and keep them for myself.  To me it is peace. 

Each morning I wander into Jonah's room and open the blinds.  I kneel in his room and ask God for strength.  I ask for opportunities to feel Jonah near me.  I ask for revelation.  I stay in there in the silence until I feel ready for the day.  I don't think I will receive these things, or feel his lightness upon me, if I busy myself in distraction and noise.

Of course I would trade these peaceful moments to hear Jonah's little voice, or his giggle. I would love to hear the repetitive music from his favorite videos.  I wish I was dancing with him in our living room right now instead of typing this.  I long to hear him say "Momma" one more time.  But I know those things will not be part of my life today. 

I know that some silence and stillness are required of me now.  Not all the time.  There is time for laughing and conversation and music and TV.  We are not living like monks, although I'm beginning to understand them.  I want to be ready for inspiration.  I want to make room for silence in my day.  I am not afraid of it anymore.

 Jonah's first word.

Tuesday, December 13, 2011


I think one of the things I miss most about having Jonah with us is seeing him with Jordan.  Watching them together was one of the greatest joys of my life.  It seemed like Jordan always knew what Jonah needed and what would make him happy.  He is such a kind and gentle father.  No more words are needed, these pictures say it all. 

Friday, December 9, 2011


Monday, December 5th I felt angry.  At least I think I felt angry.  I am a middle child, a peacemaker.  Anger and I haven't spent much time together, at least not in public, so it is a hard emotion for me to decipher.  It always comes in combination with frustration, sorrow, guilt and so many other messy emotions that it can be hard to distinguish.  On Monday it came with the feeling of deep irritation and self-pity. 

Why Monday?  Monday was the day Jonah was scheduled to have a major cranial-facial surgery.  His surgeon planned to take a bone graft from his skull to build up his cheek bones to support and realign the orbits of his eyes.  We would have spent the better part of this week in the hospital.  When the surgeon described this procedure to me months ago I felt like throwing up.  It was so hard to think of putting our Jonah, our beautiful healthy child, through such a difficult operation. It was hard to think of a doctor changing Jonah's appearance, because I loved him just as he was.  But we put our trust in the surgeon, had faith that it was the best thing for our child, and put the date on the calendar.

So Monday morning I couldn't figure out how I should feel.  Should I feel grateful that Jonah did not have to go through such a difficult surgery?  Should I resent the fact that I am not in the hospital with him right now?  Should I wish in my heart to feel the fear of sending my child into surgery?  It was just too much for me.  I couldn't bring myself to feel grateful that he wasn't having surgery, and I couldn't wish that he was alive to experience such pain.  So I chose to feel anger. 

When I'm angry I don't really lash out at others, I just shut down.  I stop talking.  I stop writing.  I just stop and feel sorry for myself.  I let myself feel frustrated for a moment by all of the challenges we have faced in the last two years.  I begin to label the things I hate.  I hate that Jonah died.  I hate that our bodies are imperfect.  I hate that I carry a genetic disorder that I could pass onto my children.  I hate that other people in the world are careless and negligent of their children, and yet their children live.  I hate that with all the medical technology in the world, no one could save Jonah from the tiny fruit snack I gave him.  

I am academic enough to acknowledge that anger is a normal part of grief.  But as these moments of anger have come I have found that there is a difference between feeling angry and being angry.  Letting myself feel anger is cathartic.  It is like a good cry, it releases the built up frustration of living in a world that is beyond my control.  But being angry is something different.  It is not a release, but a holding on.  It is choosing to dwell in the difficulty of that which is beyond our control.  As I laid in bed, wallowing in my misfortune I recognized that I do not want to be angry.  

Monday night I was able to tell Jordan how frustrating life is, of course he already knows.  He made dinner for me (egg, cheese and bacon biscuits) and bought me a cherry coke.  He got me out of the house and reminded me through his presence that I have so much to be grateful for.  That gratitude seemed to expose my anger for what it really was: sadness, heartache, disappointment, and longing to be with my beautiful, perfect boy. 

Be not hasty in thy spirit to be angry: for anger resteth in the bosom of fools. Ecclesiastes 7:9

Wednesday, December 7, 2011


This morning I read a passage from my journal.  It is from September 28, 2011 the day before Jonah died.  First I wrote about all the amazing things Jonah did that day.  He climbed the highest stairs to the highest slide at the playground, learned to suck through a straw, and signed "dog" when he spotted a puppy.  Incredible right? As soon as Jonah was born my journal became about him, with only moments of me in between.  That day I happened to write these words about myself:

As for me, when people ask what I've been up to I can't think of anything.  I'm busy all day and do a lot, but not much to talk about.  Jonah is my life now.  Everything I do is for him, and I don't mind. 

When Jonah was born I began losing myself.  Each day he lived I learned to give up a little more of what I thought fulfilled me in exchange for what he needed from me.  I gave up going to lunch with friends at the drop of a hat.  I gave up professional achievement.  I gave up sleeping in.  I gave up shopping for clothes, and I gave up going on adventures to exotic places.  I'm pretty sure I gave up important parts of my brain.  

In exchange I got sleepless nights and days, dirty diapers, poop in the bathtub, dinner thrown on the floor, doctors appointments, worry, and the most intense heartache I have ever experienced.  I also received dimpled smiles every morning, first words, first steps, beautiful giggles, bright eyes, and an intensity of love and emotion I didn't know was possible. 

I do not want to make mothers feel guilty.  I have good friends and good mothers tell me they feel guilty for not enjoying every minute of motherhood when they know it is a precious gift.  I won't say that I cherished every minute of motherhood.  It is hard to wake up every three hours.  It is hard to haul a car seat everywhere you go.  It is hard to pump breast milk for 8 months.  It is hard to make dinner while a toddler demands your attention.  There were days when I longed for Jonah to sleep so that I could veg out and watch Survivor.  Sometimes when I could hear him waking up from a nap I would freeze like a deer in the headlights hoping he would fall asleep again.  Motherhood is hard, often mundane work. 

I just want to say that it is sacrifice that creates pure love.  I felt more love in the short 14 months Jonah lived than I have felt in my entire life.  I believe it is because I gave more of myself and my time to him than I have given to anyone else.  Now my time is my own again.  I can sleep or travel or work or play.  I could pursue a career, or a passion.  I am free to find fulfillment in my own endeavors, and yet I long to lose myself in motherhood again. 

He that findeth his life shall lose it: and he that loseth his life for my sake shall find it.  Matthew 10:39

Sunday, December 4, 2011


Today we were given two beautiful gifts.  I needed them.  This morning as we drove to church Jordan and I both felt lazy and tired.  Although our church is a beautiful place, full of people who love us and have supported us, it is also a place where we are constantly in conversation about ourselves.  Kind, and charitable people want to know how we are doing, and sometimes there is little more to say than "we're okay."  It feels unnatural to have so much attention upon us, especially for Jordan.  So as we drove to church, in our malaise, I prayed that we would have an experience today that would lift us, and we did. 

The first gift came at the end of church.  My beautiful, talented friend Vanessa presented me with an amazing quilt.  The quilt is made of blocks decorated and stitched by the women and children of our congregation.  Each square is unique and made with love.  Some have messages of hope, some have Jonah's sweet name, some are simple outlines of the smallest hands.  It is a gift that left me speechless.  I plan to wrap myself up in it on days when the world seems cold and tiresome.

The second gift came just after we arrived home from church.  The doorbell rang as I was making meatloaf.  Hands filthy, I quickly washed them and rushed to the door, not sure who to expect.  I opened the door to unfamiliar faces, a mother, a father and a son.  The mother said, with tears in her eyes, that they heard about Jonah's passing and had a gift for us.  On the porch was an adorable Thomas the Train Christmas tree from the Festival of Trees.  This was no ordinary tree.  This amazing tree was decorated by a family who lost one of their twin boys shortly after he was born.  The card that came with the tree read:

This tree is a tribute to the love that a little boy has for his precious twin brother.  Joshua and Caleb were born 5 years ago.  Joshua stayed 5 weeks in the NICU and came home to his family just in time for Christmas.  Caleb's stay in the NICU was for 3 short days before he returned to another home.  As Joshua has grown, he has developed an awareness of Caleb and a desire to share the things he loves most with his buddy.  Joshua loves trains and has donated his favorite Thomas to this tree.  Caleb's other brothers and sister have also placed a train on this tree for Caleb. 

Sometimes the emotion I feel seems too much for my body.  I was so moved.  The tree was purchased for us by the Live W/Elle Foundation, a foundation that was started after the tragic death of a beautiful 15 month old baby girl.  It was brought to us by this kind and humble family.

I have truly been blessed with many gifts in the past 2 months.  It is a gift to recognize that sorrow and heartache come to so many lives, that although my loss is unique my sorrow is not.  It is a gift to know that I am not alone.  It is a gift to be the recipient of Christ-like love and service from friends and neighbors, as well as total strangers.  It is a gift to receive service that is given without the expectation of recognition, or reward.  It is a gift to find connection with other mothers and fathers and families who have lost loved ones.  It is a gift to feel true love poured out upon me.  These are gifts given to me by my Heavenly Father, who loves me, and knows me.  They come to me through His children, who know Him and love Him.  I am so grateful.

Saturday, December 3, 2011


It seems as though each day I become aware of a new mother that has lost a sweet child.  Tonight is no different.  What a sacred and sorrowful awareness.  As I sit and ponder loss I remember a poem that my dear friend Mindy sent to me the night Jonah died.  It is beautiful and brought me a moment of comfort in my darkest longest night.  

The Night by Carol Lynn Pearson

Is a narrow thing,
Tight against
My breath --
Begging an answer
To unanswerable

I’m remembering
A sunrise.
I saw the bright
Quick streams of light
Sing gold across
The sky.
And it came to me then
How essential
Is the night:
For only from dark
Do we know dawn
At all.

the memory lets
One small solace in.
If we must endure an end
To know the endless --
Oh, gladly
will I let you go:
that when I see you
Standing at the door
To that more
Permanent place,

How quickly
I’ll recognize
The eternal
In your embrace.

Friday, December 2, 2011


People say that experiencing a tremendous unexpected loss is like living a bad dream. It is in some ways. Reality seems to blur with dreams and memory into a surreal haze. When Jonah was alive I had occasional nightmares about losing him, or forgetting him somewhere. I would wake up in the middle of the night, with the feeling of loss in my heart, only to be reassured by his rhythmic breath in the other room. Some days my life feels like I've awakened from a bad dream, but the harsh reality is too potent for that feeling to persist.

I feel a new disorientation now. I try to hold onto my memory of Jonah. I try to see him, even recreate him perfectly in my mind. I can't remember him as he really was. I can't piece together a perfect chronology of his events and days. The memory of his laugh, his smell, his smile are all slightly blurred by my imperfect recollection. His existence feels more like a beautiful dream to me, the kind of dream that follows you into your day and lingers in your heart.

His dream settles on me when I walk to my car, and it as if I remember a dream where I walked to the car with him holding my hand. When I kneel down to clean the bathtub, I remember a dream where I watched him play in the water and washed his beautiful blond hair. When I walk into his room, I remember a sweet dream of his hands in mine as we rolled and rocked on the exercise ball and he giggled. I have moments where I catch myself wondering if he was ever even really here with me. It breaks my heart.

The evidence of his life is all around me, his blankets, his toys, his clothes, all should be proof to me that he was here. But these things are products of the world, and are not part of him. I cling to the evidence of his body, the vanishing smell of his dirty sweetness on his blanket, the stains from his sweaty head on my down vest, the crusty boogers on his blanket, and the small smeared hand prints on our windows. I cannot get rid of these things, at least not yet. I may become like those crazy women in Grey Gardens.  Maybe people will begin to whisper about my dirty windows, and how I cling to the past.  I will take my chances.  His hand prints connect me to reality.  They remind me that this is not a bad dream, and that he was really mine for a beautiful moment.