Wave of Light

Today is Pregnancy and Infant Loss Awareness Day.

After experiencing the neonatal death of our son, William, we were changed forever. We grieve hard but have faith that we will meet him again. Even so, our sadness is immense. What we've learned is that life goes on, as cruel as that sounds. And it pains us to know that we'll never kiss his sweet fuzzy head again, or dress him in a football outfit on Sunday, or snuggle him when winter comes - we'll never get the chance to photograph him at a pumpkin patch, or hold his little hand, or watch as he digs into his first birthday cake. With all those thoughts, we feel that he was robbed of a beautiful life.

We also have the happy memories and inspiration our little boy has given us - and that is pure love.

Some people think that infant death and stillborn death are to be kept silent. No one wants to go there. But it happens and it happened to us. For all those who have experienced a death of a baby, we wish you well and hope you find peace. And remember, it's OK to cry.

Tonight we joined others in a candle lighting ritual called the Wave Of Light.

Please join us in lighting a candle for William and all babies who left this world too soon.

xoxo
Liz and Tom

...one set of footprints

Do you all know this poem? My sister and bro-in-law have it displayed in their house. I read whenever I visit. It has never had such an inspirational impact on me as it does now and so I'd like to share.

FOOTPRINTS

One night a man had a dream.
He dreamed he was walking along the beach with the LORD.
Scenes from his life flashed across the sky.
He noticed two sets of footprints in the sand,
one belonging to him and the other to the Lord.

When the last scene of his life had flashed before him,
he looked back at the footprints in the sand. 

He noticed that certain times of his life,

the saddest times,
there was only one set of footprints.

This really bothered him and he questioned the Lord about it. 

"Lord, you said that once I decided to follow you,
 you'd walk with me all the way.
 I don't understand why, when I needed you most, you would leave me."

..."My precious child,
I love you and I would never leave you.
      During your times of trial and suffering,
when you see only
                         one set of footprints in the sand...
... it was then that I carried you."

I refuse to believe that William's death had something to do with God's plan. I do believe he has a plan for him now. And I believe he has a plan for me and Tommy and our future. Sometimes I feel like God is placing me back down on the ground to walk on my own, but it's the most comforting thought to know I can lean on Him.

Peace, love, and faith,
Liz

This time last year

We just have to share more ultrasound photos of William. These photos were taken at a time when we discovered that something may be wrong with William. A turning point. Before this time we lived each week happily oblivious that something could ever go so wrong, we grew more and more confident that we were "out of the woods", odds were so low that anything bad could happen after 20 weeks.

Then our whole world turned upside down. We transferred to a high risk hospital and high risk specialists. We told our family.

We were still hopeful that everything may change, ultrasounds weren't 100% after all, maybe the next ultrasound would look better...

We like to think that these ultrasound photos represent how beautiful a growing life can be - how incredible that it unfolds for a little baby growing in the womb. We love looking at his scans and comparing them to his actual photos at birth. Every time we look, we see something new. 

With love,

Liz and Tom

3D scan of William with his hands over his face

He looks like he's sleeping in this one, cute little nose and lips and chin

5 little fingers up near his nose, his mouth is slightly open

Hand up by his head, his strong little heart can be seen in his chest, and his pudgy little belly underneath. A full bladder and cute little leg tucked in nice and cozy

Hope

Hope was a constant theme of our pregnancy with William. We always had hope. Even before we knew anything was wrong, we hoped for a normal pregnancy. Then at the first indication that something may be wrong, we hoped the doctors were mistaken. When we knew the doctors were probably right, we hoped he'd become better after birth.

We hoped our hearts out the day he was born.

Even hours later when William's doctor said, "It's come to that time..." - even when we knew he was dying we held onto it.

Hope did not vanish all at once. It lingered. I remember Tommy handing me our little guy and placing him on my chest. He wiggled and squirmed right into me. A nurse later told me that he looked content, like he was back where he felt most comfortable. Kate told me that he opened his eyes a bit :)

Were we in shock? Maybe. But we were still hoping that by some miracle of unwavering, parental love - a power only we could give him - he'd pull through.

It was in between that special time we had holding him that we loosened our grip on hope and let the grace of God shine down on us. It's hard to explain everything we felt. Loss for words, drained of energy, we sort of felt like everything was over; his struggle, our pregnancy, the waiting, the worry. But not everything was over - we know now that his life wasn't truly over, he lives on.

We poured all our love over him. He gave it right back. We believe this exchange of love is intertwined within every molecule of our body. We've never felt more connected with any other person. We are a trio.

Now, we hold onto a new hope. It's too scary to think we could lose another baby. So instead we will continue hoping for a healthy baby.

We'd like to share a little poem with you today and a photo of his perfect little foot.

Hope is the thing with feathers

That perches in the soul

And sings the tune without the words

And never stops - at all

                                      Emily Dickinson

William's little foot, the most perfect foot we've ever seen

Love to all,

Liz and Tom

A walk with William

It's been 9 months since William was born. It's also been 9 months since I kissed him goodbye. I feel like with all the sadness that comes with losing a baby, sometimes I have to remind myself of how much goodness he's spread and to celebrate that.

Today, while walking through the park, I came upon a street performer playing "Twinkle Twinkle" on accordion. This is not the first time one of William's songs played at the exact moment as I passed by. It's actually happened three times this summer. Once, outside of the subway a violinist played "Colors of the Wind" and I've heard "You are my Sunshine" on guitar in the same spot as today. We listened to these songs all the time when he was in my belly. I think he liked them.

Maybe the angels have brought these songs to me as a source of peace and comfort, another way to connect me with William. And that makes me happy.

As I walked on, I imagined him giggling at all the ducks and swans and squirrels. It made my day :)

xoxo
Liz

peaceful day in the park

angel sculpture in the public garden

9 months in heaven

There is a certain happiness that William gives us. It’s unlike any other happy feeling. We're glad to have this platform to share that happiness with you.

Happy 9 months, little boy! 

xoxo

Mommy and Daddy

Honored to be his parents

Loving him was the easiest thing we've ever done. 

Losing him was the hardest. 

But to have him part of our lives has been the single 

greatest privilege of all. 

We look at all the good that has come from William and his life and all it's done for us and we feel so honored to be his parents :)

Cherubs look after him

Four months after William died, we found ourselves in the Vatican surrounded by world treasures and some of the most exquisite paintings one would ever see. Rare pieces, like the two shared below, took our breath away. They are frescoes painted in 1480 by Melozzo da Forlì. The exhibition struck us because it pictured darling little angels praying over a small child with blonde hair :)

The art was titled simply as "a group of cherubs" - but to us, it meant so much more. They were a beautiful vision of what heaven felt like. Little baby bear, surrounded by light and love, being cared for by angels just like these, all snuggled up in the clouds.

To think that 500 years later, through wars and weather, after being torn from their original fresco wall, transported and restored, these painting would meet with the gaze of two grieving parents and speak to them like no other art ever could...

We hope you enjoy these paintings as much as we do and we look forward to sharing more of our favorites soon.

xoxo,
Liz and Tom

Love at first sight

We wanted to share his second ultrasound photos with you all, taken about this time last year. They bring us back to such happy times. Baby was growing well and there were no signs that anything was wrong. We were still on cloud nine.

It's nice to remember the good times.

xoxo,
Liz and Tom

perfect little arms and tiny little fingers

cute lil nose

you can see his leg and two lips in this shot

one of our favorite scans of William sleeping so peacefully :)

his hand giving a little fist bump

rolled over on his belly, face down, silly baby bear ;-)

Beach star for William

The infant loss online community has been a huge support for us. We've found quite a lot of comfort out there. It's there where we were able to acquire this stunning photo of William's name written in the sand at twilight. The artist, Carly Marie, is a mother of three, her first child, her first born son, died and her daughters live on with her and her husband. She has found healing in helping other parents through grief. After writing his name in the sand and saying a small prayer, she captured a beautiful photo right after the first star appeared in the sky. It makes us feel peaceful.

We love you, William - you make us so happy, our little star :)

The summer after William

This post is inspired by a women who documented every day in the month of July, dictating life as it happened, a genuine account of daily thoughts and actions. She called it “Letters to July”.

I thought I'd try it out, so here is my letter to my month of July, a rambling that I thought I’d share.

Dear July,

I love you, July. I don’t want to say “but” after that statement. But, there is. I hate that there is. I was expecting you to bring me incredible happiness, July. There were good times, don’t get me wrong. But a certain kind of happiness, well... it was simply impossible to experience.

We were going to start you off by watching the parade, stocking up on sunscreen, buying a tent for the beach. It was going to be just like last year - only THIS July, we’d have baby William. It was going to be his coming out month. Those golden curls. Everyone would just eat him up. We were suppose to be on the beach tip toeing in the water with him in our arms, holding on tight so he wouldn’t slip from all those soft baby jelly rolls.

He’d be 7 months old. We are accepting the fact he died, but it’s a hard pill to swallow. Sometimes we may just be kidding ourselves.

We’re finding comfort in your sunshine and warm breezes. But - there it is again - all those characteristics of yours, the sun and the warmth - they remind us of some alternate life, one where he survived, one that is perfectly amazing. One where he’d be riding with us through life in his green stroller sporting his little sunglasses. You were good to us, July. But it would be a totally different July if he was here.

I thank you, July. For all the summer days and memories made. We’ll see you next year. Hopefully we’ll have another, happy little reason to soak in your sun. 

xoxo

Our Sweet William

Sweet William is a cute nickname we call our baby but it is also a type of beautiful wild flower. We just love them. They are a biennial variety and bloom with clusters of white, pink, and purple blooms.

We were happy to offer sweet william seed packets to guests during William's memorial reception. If you could not attend and would like a packet, please comment below or email me and I'll send you one!

Mementos and basket of sweet william seeds on display for the memorial

• Simply sprinkle the seeds in a sunny spot, wildflowers are tough and adapt to different types of soil. 
• Sow shallow, compressing directly into bare soil, do not cover. 
• Water and keep soil moist until sprouts are 6-8" tall. After that, wildflowers prefer minimal care.
• Mow down in the fall with a mulch setting to disperse seeds.
• Be patient, sometimes sweet william wait till the second year to bloom but they are worth it!

colorful row of sweet william

We actually enjoyed these flowers even before William. They just popped up randomly in bunches in our yard every summer. We never knew what they were called until Kate suggested using them to decorate for the memorial service, since they shared the same name as babybear. They are extremely hardy, lasting long after being cut and put into a vase. You can also plant them in containers, see our mini garden featuring sweet william here. 

happy gardening :)

Learning more about William

We've had many meetings with doctors over the last year. With each one we learn a little more about our baby bear. Naturally, these meetings are pretty hard to get through. They are always located in the hospital, which can be a bit overwhelming in itself. But they can also be nice, something we actually look forward to. The sights, the sounds, the smell - they bring us back to the days we still had him.

The hospital is an overwhelming place but also a place that houses such incredible memories and a strong connection to him. We remain hopeful that one day we will be back in the same hospital giving birth to our second child, William’s spirit right there ready to meet his little brother or sister. It makes us so happy to think about that day.

Last month we had a pretty big meeting with his doctors. It's difficult to verbally express to people what happened, so we thought we'd share on the blog.

The meeting went well overall. We learned that William’s anemia was likely due to a form of ineffective erythropoiesis where William was able to make red blood cells but was unable to use them properly. We listened patiently as the doctors explained how all the clues and characteristics of William led them to believe he had a rare red cell disorder - one that doesn’t fit into any category they have seen before. There is probably a genetic cause linking it all together, either recessive and passed down or “de novo” and seen for the first time in William.

One specialist used the whiteboard to draw how William’s red cells appeared under the microscope compared to how normal red cells look. They answered all of our questions and showed us compassion and care. It was clear that everyone involved investigated his case vigorously with much effort. They shared the pain of losing him with us, expressed how sorry they felt, and that takes courage.

At the end of the meeting we were the last to leave the room. We walked out clutching onto each other, emotionally exhausted, and just cried right there in the middle of the hallway until we were ready to walk again.

Although we wish we had a clearer picture as to what happened and more importantly why, we consider ourselves lucky in a way to have known about him on another level, to know how special he was.

He continues to amaze us. 

We also consider ourselves lucky to have so many experts as part of our team. We trust them and most importantly, we realized that they are not giving up. 

One of the doctor’s wrote to us after the meeting saying what a privilege it was to be of help. And one of the doctor’s promised to follow up in the future. We may be able to enter one or more research pipelines where scientists will look again, and again, until they find more patients with similar phenotypes as William’s and then reevaluate his case to learn more.

One doctor who took care of William after he died, told us in 25 years she has never seen any baby as unique as our little guy. We’re not sure what to think about that - we just know how much we love him - how much happiness he’s given to us.

We are now waiting for more specialized testing. Odds aren’t great, but maybe we will find a clear cut origin of his anemia. Maybe not. We will update everyone when we know more, most likely late fall. For now we are enjoying summer as best as we can and wishing fall would get here faster.

Thank you so much for all your support and hugs and prayers!

We are happy to be visiting more with family this summer and moving through grief one day at a time - with all of you right there with us.

xoxo
Liz and Tom

Sweet Baby Angel

We'd like to share a remembrance poem for William that has brought us much comfort. We displayed this poem during William’s memorial reception but did not have time to read it aloud. It is a beautiful message that paints a picture of what heaven is like for our William. It's called Sweet Baby Angel.  We hope it brings you comfort as well.

Sweet Baby Angel

You’re dancing with the angels now our precious little boy...

The heavens are rejoicing and angels’ hearts are filled with joy...

One angel in particular... she has the kindest face

We see now she’s the angel in charge of Heaven’s Crèche

She takes you from the others and she sits you on her lap

And she sings to you a lullaby as you snuggle for a nap

She’s whispering so softly that it’s hard for us to hear

But if we listen carefully the words become quite clear...

She’s telling you we love you from the bottom of our hearts

That we’ve loved the very thought of you right from the very start

That we wish that we could cuddle you and never let you go

And cover you with kisses so that you would always know

How precious were those moments and how blessed we feel to be

The mommy and the daddy that you chose to come and see

She’s telling you how sad we are that you couldn’t stay and play

And that we understand how tired you were...

That you’ll play another day...

Another day you’ll see us... a lifetime we will wait...

Then you’ll be there to greet us just inside of Heaven’s gate

You’re smiling at the angel and you seem to understand 

And then we see you blow a kiss with your tiny little hand

We close our eyes to catch it... feel it land upon our cheek

And we thank you precious darling...

Sweet baby William... time to sleep xx

                                                                                       

© Written by: Sheila Knaggs

Aunt Anne sings for William

This post features a very special video of Somewhere Over The Rainbow, sung by William's Auntie Anne during the memorial service celebration.

William, did you know you have thirteen great-aunts? They all love you so much.

I grab hold of any connection I can to William, and I believe music is one connection. It moves you and pulls you into different emotions. It was hard in the beginning to listen to music, but we are starting again to discover the joy that music offers.

It makes me happy to think that maybe William listens to beautiful music too. Perhaps lullaby's like this one that you could listen over and over again. Thank you, Auntie Anne for your beautiful singing and Grandma Schneider for catching this on video!

Somewhere over the rainbow, bluebirds fly

Birds fly over the rainbow

Why then, oh why can't I?

Somewhere, over the rainbow, skies are blue

And the dreams that you dare to dream really do come true

Someday I'll wish upon a star

And wake up where the clouds are far behind me

Where troubles melt like lemon drops

Away above the chimney tops

That's where you'll find me

Somewhere over the rainbow, bluebirds fly

Birds fly over the rainbow

Why then, oh why can't I?

If happy little bluebirds fly

Beyond the rainbow

Why, oh why, can't I?

Acts of Kindness for William

We feel that being kind is a simple but powerful way to honor our little boy. Acting kind to others and to ourselves is a way for us to stay positive while grieving. We like to call it “grieving in the light”. We invite you also to pledge to be kind, to give a bit of yourself away to someone else. It might be to love more. To tell your family member how much you love them. It could be a donation of some sort. It might be as simple as lending a helping hand to someone in need.

Showing compassion inspires others to do the same and so it creates a ripple effect. It would mean so much for you to keep William in your heart by thinking of him when you spread kindness.

The Random Acts of Kindness Foundation is dedicated to this exact cause. There, I found all kinds of ways to be kind :)

Please feel free to download and print random act of kindness cards by clicking here. You can carry these in your wallet. When opportunity strikes to perform a random act of kindness, you may leave a card behind in memory of William.

Kindness Ideas:

Tom and I are smiling more, going on walks, and eating healthy. We also paid for the person’s coffee behind us in the Dunkin Donuts drive through. And tip extra for hard workers. It feels really good to be kind. And it’s contagious. We’d love to hear your acts of kindness.

Go ahead and pay it forward!

Love is stronger than death

We love Pope Francis and would like to share some of his words below as they are comforting and relevant to us during this time.

"The loss of a son or daughter is like time stopping altogether:  it opens a chasm that swallows both past and future.  For parents, surviving their own children is particularly heartbreaking; it contradicts the fundamental nature of the very relationships that give meaning to the family.  Death touches us and when it is a child's, it touches us profoundly.   

Our loved ones are not lost in the darkness of nothing:  hope assures us that they are in the good and strong hands of God.  Love is stronger than death.  

Thus, the way is to let love grow, make it stronger, and love will guard us until the day that every tear shall be wiped away, when 'death shall be no more, neither shall there be mourning nor crying nor pain any more' (Rev 21:4)...

All our loved ones who are gone, the Lord will give them back to us and we will be together with them forever."

~ Pope Francis (General Audience, St. Peter's Square, June 17, 2015)

Father's Day 2015

I don't know what William is thinking about today but I know he loves you, Tommy. 

His love for you is undeniable. 

He's walking right along side of you, looking up to you - I know it. Because you're his hero. You've held our family together and stayed strong even though your heart is broken. We love you :)

Happy Father's Day

Love, Mommy and William

William in daddy's arms

Lost love is still love... 

It just takes a different form, that's all. 

You can't hold their hand...

You can't tousle their hair...

Or move them around a dance floor. 

But when those senses weaken another heightens. 

Memory. 

Memory becomes your partner. 

You hold it. You dance with it.

Life has to end.. Love doesn't. 

                                                      -Mitch Albom

Happy Father's Day to all fathers who know the pain of losing a child, they are still fathers, the bravest of fathers. 

William Bear

Shortly after William died, desperate for something to help us feel better, we found Molly Bears online. Molly Bears is a company dedicated to providing teddy bears to families whose baby has died. Molly Bears was founded by a family who lost their sweet angel, Molly, at 34 weeks gestation. Molly Bears are special because they weigh exactly the same as your baby.

So we requested a bear and waited. The wait list is very long, like 3,000 bears long.

When we received our William bear last week, it was the first time we felt the weight of our baby since he died. It brought tears to our eyes. We love our William bear! We are very impressed with the quality and comfort our bear has given us already. And we think that William bear will bring happiness to our future children as well.

Every bear is handmade and personalized. For us, it was incredibly moving to know that someone out there wanted to give us support, wanted to fill our empty arms, and wanted us to remember.

Molly Bears staff volunteer their time to the making of the bears. If you are looking for a new way to give back, we urge you to please consider donating to Molly Bears.

We just donated in honor of William, you can too :)

xoxo,
Liz and Tom

This time last year

This time last year we found out we were pregnant. Our first baby! If you have ever been pregnant, you know how it feels. There's a common thread in the thoughts of the newly expecting, surprise most likely tops the list.

When we found out, we laughed and cried and hugged. I remember looking at myself in the mirror, jaw dropped, already noticing a difference. All the food cravings and fatigue I’d been experiencing the weeks before quickly made sense. 

It was the happiest day of our lives. 

Everything was going to change. But it was perfect and we felt on top of the world.

A week later, during the first ultrasound we held our breath. The sonographer warned us, “You may not be able to hear the heartbeat since it’s so early”. But sure enough right as the wand hit belly, we heard what would become our favorite sound. Whoosh whoosh whoosh. His heartbeat was strong and steady.

Here he is, one year ago, such a cute lil peanut with his arm buds already formed.

tiny little baby bear at 6 weeks

Letter to William

(William’s Special Day Part 10)

We ended the memorial service with a letter to our sweet angel.

Dear William,

On December 13, 2014 we met you - and it was the best day of our lives. You’re our everything. You filled us with more love we ever thought was possible. We are forever blessed to have gotten to hold you. We kissed your fuzzy blond head and we amazed by your beauty. We could have cuddled you forever. That is something that we struggle with, not being able to cuddle you. And all of those earthly hopes and dreams we had for us, well, they won’t unfold the way we imagined. But they will still unfold, just in a different,  special way. Your heavenly presence - which we feel all the time - will be with us as we live our lives.

We waited a long time for you, William.  When we found out you were a boy, mommy cried in the hallway of the hospital and we immediately knew what to call you.  We already had a name picked out.

We named you, William Patrick after your Daddy and your uncles. Along our journey together, we gave you nicknames like little peanut, baby bear, and our little star. We read to you and sang to you and our hearts grew larger every day because of you. We traveled with you and swam in the ocean and dreamed of our lives together.

Your kicks were so strong, William.  Your first kick was felt the first week of the football season while watching the patriots on TV.  We were so excited that you were already a fan and couldn't wait to take you to games.  You have more patriots onesies than any other kind.  We wish we could send them to heaven for you.

We saw your strength early on - from the first time we heard your heartbeat at just 6 weeks old. Your heart beat was perfect, our favorite sound. As the weeks went on we noticed that your heart kept beating strong but something was causing it to work harder than it needed - your heart was perfect, little one. But something - something we still don’t understand, something that we couldn’t have prevented, was taking place beyond our control. We know you tried your very best that’s why we call you our little warrior. William, we tried our best too, to solve the mystery. We are still trying. You’ve inspired many people, including your doctors who were amazed by your fight- and will not stop until we find some answers.

William, you have shaped us.  We love you so much.  You are our whole world.  We believe you are with God now and your great grandparents.  We believe you are happy.  But we miss you terribly and look for signs that you are around.  Thank you for all the signs you’ve already sent.

There has not been one single second of time when we wished we could forget what happened. All we want is to go back and relive it. You made us a family and you made us a mommy and a daddy. We are so proud of you little one.

As we count the days, the moments in life that we wish you were here, we also know that we are that much closer to meeting you again, our sweet angel.  We promise to lead our lives with peace and love, protecting each other, and living through your inspiration.  When we do go to heaven, the first thing we'll do is run to you.  For now we’ll hold you in our hearts, and find you in our dreams until we meet again in heaven.  

You are the first thing we think about when waking up.  And this, William, is an incredible gift because that means that every day starts in a wonderful way.  We start our day with you, our little piece of heaven.

Whenever we see sunbeams shining through the clouds we think of you. Whenever we see the stars we think of you. Our little star, we miss you so much. You made us so happy and we are so glad we had months of time to bond with you in my belly and were able to meet you. I wish I could give you a million kisses to tide you over until we meet again. For now, I’ll give Daddy kisses on his forehead for you. I first kissed you on your forehead. It was the best kiss of my life.

We love you, William, our beautiful baby boy.

Why did God let it happen?

(William's Special Day Part 9)

William's service included a reflection written and read by uncle Matt. His reflection is beautiful. It reminds us of how lucky we are to have him in our lives. Matt has made a big difference in our grieving. He was there to talk, to laugh, and to be silent while we cried. William may never have met his uncle Matt face to face, but they are still very much connected and we know that William loves his uncle very, very much. How could he not.

Uncle Matt loves you, William  :)

Why did William die? Why did God let it happen?

A Reflection by William's Uncle, Matt

I think we’ve all been asking this question since William’s death.  As a theologian, I have thought long and deeply about the question of death and human suffering; but for the most part, I thought about the question in the abstract; for me it was a philosophical problem. I was considering an apparent conflict of ideas: how can suffering exist in a world created by an all-good and all-powerful God? But when William died, the question became real. For me, the tragedy, the absurdity, the injustice of baby William’s death gave rise to deeply existential questions that were no longer fueled by a detached wonder but were energized by frustration and anger.

Why did God let it happen? I have come to the realization that the question itself may be problematic.  It is a loaded question that can lead us to think about God as one who, in his limitless power, had the option to prevent William’s death and his family’s suffering but chose to remain a passive spectator—watching the tragic story unfold from the heavens.  This view of a spectator God who deliberately chooses to stand by passively in the face of human suffering and withhold life-saving measures for one of his children seems hardly compatible with the God of boundless love revealed by Jesus in the Gospels.  But if death and suffering are neither directly willed nor even deliberately permitted by divine love, then perhaps the question “why did God let it happen?” is not the best question we can be asking.  Not all questions are good questions.  Imagine a child asking the question: how many miles long is Tuesday? As adults, who understand that Tuesday is a measure of time and not distance, we realize the senseless nature of the question.  It doesn't have an answer because it’s not a real question.  Perhaps we stand, like children, before the vast mysteries of God and continue to ask questions that are equally senseless.  Maybe “why did God let it happen?” is one of those senseless questions; maybe it doesn't have an answer because the question is not a real question in the first place.

Perhaps it is senseless because the Christian God is not passive in the face of human suffering; he doesn't simply choose to let it happen from his distant throne in the skies. If we want to find the God of the Gospels, we look not to the clouds but to the cross, where our Lord hangs with open arms embracing all those who suffer in the world.  In the words of Fr. Michael Himes,

“The Cross does answer the question, ‘How can God will  (or permit) this suffering?’ and the answer is that God does not will or permit it.  God hates human suffering; God will not tolerate the pain of God’s creatures.  Then, given the terrible reality of suffering in the world, where is God to be found? God suffers with us.  God does not permit the cross; God is on the cross.”

14th century church interior, Montepulciano Italy

Still we may ask, where is this God who suffers with us? Where is he to be found?  Where was he in our suffering? Why does this God not answer us? But let us not mistake silence for apathy. Mother Teresa says:

“God cannot be found in noise and restlessness.  God is the friend of silence.  See how nature - trees, flowers, grass - grows in silence; see the stars, the moon and the sun, how they move in silence.... We need silence to be able to touch souls.”

I think that motherhood offers us a beautiful image for understanding the God who Mother Teresa speaks about—the God who is with us and loves us in silence.  We are so accustomed to thinking about God as our divine father that we miss all that motherhood has to teach us about God. Babies in the womb are unaware of the life-giving blood coursing through them or the nutrients that are being fed to them from their mothers.  Babies in the womb are nurtured and nourished, cared-for and carried by their mothers in silence; and when babies suffer, their mothers suffer with them. Elizabeth was a wonderful mother to William in the womb. Though she sang and talked to him (as did Tom), she also loved him in silence.  Not unlike babies in the womb who are unaware of the life-giving care that comes to them silently from their mothers, we are sometimes unaware of the divine love that silently flows through us and sustains our spirits.  As it says in the Scriptures, “In God we live and move and have our being.”  Babies cannot see their mothers while in the womb not because their mothers are too distant, but because they are too near.  In our own suffering, when we cannot seem to find God, perhaps it is not because he is too far, but too close for us to see.  When baby William was born, he was held in the tender embrace of Liz and Tom.  It is our conviction, as Christians, that when we die, we too will meet and be held by the God who silently carried and nurtured us within the womb of this life.

But our God is not only the God of the cross—the God who suffers with us in silence.  Our God is also the God of the Resurrection—the God of eternal newness—the God of surprises, who will somehow transform William’s death and our suffering into a profound source of life and meaning.  We don’t yet know how divine creativity will weave William’s story into the grand tapestry of human history, but we know it will be wonderful and beautiful.  If we become too fixated on the question of why his death happened, we miss how God is responding and what God is bringing about through it.  Let us confidently place our hope not in the God who let it happen, but in the God who suffers with us.  Let us confidently place our trust in the God who has assured us that our human story does not end with the grave—that love and life will triumph over suffering and death.

Update: Jump rope for heart

Last February, William's big cousin, Noah participated in a fundraising activity to raise money for kid's with heart disease. You can check out the original post here.

We are very proud to announce that Noah was highlighted in the newspaper for raising the most money out of all the boys in school. WOW!

Noah would like to thank everyone who donated in honor of baby William and children everywhere who have struggled with heart conditions.

A Grieving Parent's Prayer

(William’s Special Day Part 8)

Looking back, I’m not sure how we kept it together that day. We were definitely still in that period of “is this really happening to us?” Mostly, we were on autopilot.

We promised ourselves that if we couldn't get up and speak, that would be ok.

But we did, somehow.

This prayer was shared by a grieving parent and friend who lost her beautiful baby girl, Stephanie almost twenty years ago. The prayer helped validate our own feelings and allowed us to grieve out loud.

We’d like to share it with you.

A GRIEVING PARENT’S PRAYER 
Written by: Bernadette Zambri
Read by: William’s parents, Liz and Tom

“GOD HAS NOT LEFT US.

we feel it difficult to pray - we need insight in new ways to pray.

we feel abandoned - we need your warmth.

we feel isolated - we need courage to take steps closer to you.

we feel hurt - we need your healing. 

we feel so sad - we need your closeness and humor.

we feel anger, resentment and bitterness - we need your peace. 

we feel afraid - we need your strength. 

we feel anxious - we need your patience. 

we feel we have lost trust in you - we need to feel your love.

GOD IS HERE WITH US”

Hallelujah Christmas for William

(William’s Special Day Part 7)

William was born during a joyous and magical time and it’s nice to think that the Christmas spirit was out there somewhere. Even though we felt immobilized in time, the world kept turning and it was mid-december. It was a devastating time, yes. But it was still the best time because it was a time that he was with us.

This song, A Hallelujah Christmas by Cloverton, brings us back to that time. William knows it well - his big cousin Madeleine sang it all season long. And she sang it beautifully during the ceremony with her father, William’s uncle Matt on piano. The lyrics are amazing. Enjoy.

A HALLELUJAH CHRISTMAS

I've heard about this baby boy

Who's come to earth to bring us joy

And I just want to sing this song to you

It goes like this, the fourth, the fifth

The minor fall, the major lift

With every breath I'm singing Hallelujah

Hallelujah

A couple came to Bethlehem

Expecting child, they searched the inn

To find a place for You were coming soon

There was no room for them to stay

So in a manger filled with hay

The son of God was born, oh Hallelujah

Hallelujah

The shepherds left their flocks by night

To see this baby wrapped in light

A host of angels led them all to You

It was just as the angels said

You'll find Him in a manger bed

Emanuel and Savior, Hallelujah

Hallelujah

The Brown Star Story

(William's Special Day Part 6)

William's ceremony was positively beautiful. It was an uplifting and incredibly moving experience - everything we wished it would be. A day to honor him in a way that was fit for a little baby with a big heart. Poems and stories were shared that provided a way to connect spiritually with our little guy. One of those stories is below, it's called The Brown Star Story by Kim Steffgen.

This beautiful story could only be told by the most special of people - those who would have read him stories and taught him how to read one day if he was alive: William's big cousin, Noah and his grandmother, Terry. We think our William loved hearing it from heaven :)

THE BROWN STAR STORY 

Not long ago, astronauts found in the heavens gaseous celestial bodies – clouds of cosmic dust – which they think have finally answered the mystery of what exists between the small things in the universe, like planets, and the bigger things, like the sun. They call the cosmic dust “brown dwarfs” or “prestars,” because although brown stars have all the same elements to become a star, for some reason they never did.

All stars go on to live full lives, from their hot, bright white dwarf stage to their aged, cooler and dimmer, red giant stage. But, “brown stars” only go so far. Instead of being born to live like a normal star’s life, they remain cool and young, hiding in the heavens, sprinkled in clusters among the other stars, one hundred fifty light years from earth.

But like baby William, their roles in this universe are very important. In fact, scientists believe they serve as a link between the small things and the big things, holding the universe together; a midpoint between the beginning and ending of our universal story.

As we grieve for William who died before reaching the stardom of his earthly life, perhaps we can find comfort in the possibility that he was designated for this very special universal role. Energized by our love, William is a guardian of our memories of what was and our dreams of what someday may be.

As we look to the heavens, seeking answers, 

let us send messages of love to our “brown star” baby.