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.

Prayers for Strength, Love, and Gratitude

(William's Special Day Part 5)

Prayers of the Faithful

~ small prayers for strength, love, and gratitude ~

Read by Grandma, Elaine and Grandpa, Bob

For William’s family especially his Mother and Father, 

that they may feel the gentle caring and love of the Holy Family: 

our Lord Jesus Christ, Mary and Joseph. 
    

☆☆☆
    

For all bereaved parents whose earthly hopes and dreams for their babies have been broken. May the memories of their babies bring them happiness.

☆☆☆
    

For William’s grandparents who mourn the death of their grandchild. 

Comfort them and give them your strength. 

☆☆☆
    

For William’s Aunties and Uncles, 

that they know that baby William is safe and happy with Jesus.

☆☆☆
    

For Madeline and Noah and all of William’s cousins present and future, 

God help them to grow in peace and love 

knowing that William is watching over them.  

☆☆☆
    

For those who cared for William in the hospital, 

that God give them strength as they continue to care for sick children.

☆☆☆
    

For family and friends whose support helps us all during this painful time, 

we pray they continue to use God's power to comfort those in need.

☆☆☆
    

For William and all babies who have died early in life, 

that these little ones are happy in the heavenly arms of Jesus.  

We’d choose him every time

So Mother’s Day was hard. And I find myself getting choked up in the days after. It wasn’t just the anticipation of Mother’s day - the advertisements of happy moms with children right besides them. William is right besides me too, just in a different way. It’s just really raw still, more so than I want to admit. And not knowing what the future holds, and losing that sweet, comfortable, innocent life we used to have. I understand everyone goes through trials in their live. I’m just jealous that most people don’t have to go through our trial.

But then again, we’d choose him every time.

I really wanted to celebrate mother’s day - not just survive it. And overall I think I did. Kate filled out a card from William to me and we ate delicious food and drank and relaxed all day.

We spruced up William’s garden too, see photo below. It’s so cute, just like him :)

William, your little garden is so beautiful. It makes me so happy. Love, Mommy

Mothers day

I am so proud to be William's mother today.

I love you, little guy. I feel your love all around me.

This mothers day my heart goes out to my William.

But my heart also goes out to all the mom's who have faced the unimaginable task of saying goodbye to their babies.

Our easter rainbow

We have been away for the last month on vacation - a chance to unwind and rest. We've reflected on how this blog has helped with healing and really want to share more.

We still think about him all the time. We still cry. But we laugh a lot more now. And we know he's right there with us every step of the way.

His love is so strong. 

People ask if the trip helped. Yes, we believe it did :) There were many special moments to cherish and lots of time to just be together as a family. We called it our "William time".

While we were away, we saw a rainbow. It was the first rainbow we've seen since his death. It was Easter Sunday and we were staying in a small town overlooking the Mediterranean sea. It was totally magical, the colors of the sea and the trees and the buildings were so vibrant even though it was sort of cloudy. Everything seemed so bright from the scattered sunbeams and surfaces shimmered from the rain showers.

I'd been feeling sad that day, it being Easter and all. All I wanted was him, my little bunny. So when I spotted the rainbow I immediately felt happy, smiled, and yelled for Tom to look. The rainbow only lasted a few moments, but that was all we needed. 

It was a reminder of how a little light can shine down and create something spectacular, how a little light can brighten up a rainy day. And a reminder that he was right there with us, that we are on this journey together.

We'd like to share a note we wrote to our little light that day:

William,

You are every beautiful thing we see,

and every good feeling we feel.

Happy Easter, little one.

Keep sending us rainbows.

We love you,

Mommy and Daddy

Easter 2015
Positano, Italy

Taken literally seconds after the rainbow dissapeared,
too short lived to capture on photo but still beautiful

"He Took Them In His Arms And Blessed Them"

(William's Special Day Part 4)

We chose two other readings for the ceremony, 
one read by Uncle Patrick and one read by Grandpa Leo. 

A READING FROM THE GOSPEL OF MATTHEW

Read by William's Uncle Patrick Schneider.

AT THAT TIME THE DISCIPLES CAME TO JESUS, SAYING, 

"WHO IS THE GREATEST IN THE KINGDOM OF HEAVEN?" 

AND CALLING TO HIM A CHILD, 

HE PUT HIM IN THE MIDST OF THEM, 

AND SAID, "TRULY, I SAY TO YOU, 

UNLESS YOU TURN AND BECOME LIKE CHILDREN, 

YOU WILL NEVER ENTER THE KINGDOM OF HEAVEN. WHOEVER HUMBLES HIMSELF LIKE THIS CHILD, HE IS THE GREATEST IN THE KINGDOM OF HEAVEN. WHOEVER RECEIVES ONE SUCH CHILD IN MY NAME RECEIVES ME"

Uncle Pat reading at William's service - Grandpa Schneider, the officiant on the right.

William has two Uncle Patricks, both of our brother's names are Patrick. And both of our Patricks are pretty amazing people. We can envision each of them interacting with William as he grew up, having different relationships with him but both very special. We wonder how baby William would look up to each Patrick as he grew. Would he look up to them the same way we do? We think so.

We'd call Tom's brother, "Uncle Pat" and Liz's brother, "Uncle Patrick" OR "Uncle Paddy" if Patrick was hard to pronounce :)

There was no advanced notice that baby William was going to born, but if we knew what we know now, we know that both Patricks would be there in person. In some way they were there. We remember talking about them both to baby William as we held him in our arms. That he had blond hair like Uncle Pat's and how he'd watch over Uncle Patrick and keep him safe in the skies.

We often wonder what we'd do if we could go back in time to December 13, 2014. First, we'd hold baby William immediately after birth. We'd also have both uncle Patricks there in that hospital room so that they could hold him too.

William loves you guys so much.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

A READING FROM THE GOSPEL OF MARK
Read by William's Grandfather, Leo. 

AND THEY WERE BRINGING CHILDREN TO HIM, 

THAT HE MIGHT TOUCH THEM; 

AND THE DISCIPLES REBUKED THEM. 

BUT WHEN JESUS SAW IT HE WAS INDIGNANT, AND SAID TO THEM, 

"LET THE CHILDREN COME TO ME, DO NOT HINDER THEM; 

FOR TO SUCH BELONGS THE KINGDOM OF GOD. 

TRULY, I SAY TO YOU, 

WHOEVER DOES NOT RECEIVE THE KINGDOM OF GOD LIKE A CHILD SHALL NOT ENTER IT." 

AND HE TOOK THEM IN HIS ARMS AND BLESSED THEM, 

LAYING HIS HANDS UPON THEM.

What a Gift From God You Are

(William's special day part 3)

Madeleine sang a beautiful version of Twinkle Twinkle Little Star. We want to share it with you. Great job, Maddie! We know William loves your singing.

Xoxo,

Liz and Tom

Fearfully, Wonderfully Made

(William's Special Day Part 2)

A READING FROM THE BOOK OF PSALMS
Read By William's Godmother, Kate.

YOU HAVE CREATED EVERY PART OF ME;

YOU PUT ME TOGETHER IN MY MOTHER’S WOMB.

I GIVE YOU THANKS THAT I AM 

FEARFULLY, WONDERFULLY MADE;

ALL YOU DO IS STRANGE AND WONDERFUL.

I KNOW IT WITH ALL MY HEART.

WHEN MY BONES WERE BEING FORMED 

CAREFULLY PUT TOGETHER IN MY MOTHER’S WOMB,

WHEN I WAS GROWING THERE IN SECRET,

YOU KNEW THAT I WAS THERE --

YOU SAW ME BEFORE I WAS BORN.

THE DAYS ALLOTTED TO ME

HAD ALL BEEN RECORDED IN YOUR BOOK,

BEFORE ANY OF THEM EVER BEGAN.

O GOD, HOW DIFFICULT I FIND YOUR THOUGHTS;

HOW MANY OF THEM THERE ARE!

IF I COUNTED THEM, THEY WOULD BE MORE

THAN THE GRAINS OF SAND.

WHEN I AWAKE, I AM STILL WITH YOU.

Auntie loves you, William!

You guys know Kate. It was her idea of writing about William back in December. She was there right besides us through it all. She is a pediatrician who advocated for our little guy. She took photos and videos when he was born. When my voice wouldn't reach across the delivery room, she told William how much I loved him and kissed him for me. She waited a long time to meet our little one.

It's hard to describe just how important Auntie Kate is to baby William. 

All we can say is that she is the "Auntie of all Aunties". William must have been so happy to hear her speak so beautifully. Above is the version that was read during the service. It differs slightly from the one posted earlier in the It's a Wonderful Life.

The Candle Lighting Ceremony

(William's Special Day Part 1)

THE CANDLE LIGHTING CEREMONY

William's candle was placed on a small table in front of the alter. Also displayed on the table was William's teddy bear (a gift from aunt Val), a bouquet of Sweet William flowers, and William's special basket containing his small star urn wrapped up warmly in his cozy baby blankets.

William's candle is not only a symbol of his eternal life in heaven, 

it is also a symbol of his eternal presence in our family. 

The lighting of the candle was incredibly special to us. Not only to remember and honor him, but also to honor all babies who have died. Just about 8 years ago, we lit another special candle in this very same church, to honor our commitment to each other on our wedding day. As we lit William's candle, we were reminded of how this little baby strengthened our family bond. The song This Little Light of Mine was played on harp. He loved that song, we'd sing it over and over again throughout pregnancy. It reminded us of a playful little William, full of life and light. It was perfect.

We call William "our light".

William's Special Day

William's memorial service began with lots of hugs.

Some of the best hugs we've ever received were made that day. 

Big, squeeze-me-tight, bear hugs from family and friends, some who traveled quite far to be with us, to be with William, that day.

We were blown away by all the love. Our little guy must have been as well.

William's special day was filled with beautiful music. All of the songs were hand-picked, many were William's favorites - songs that we would play for him as he wiggled around in the womb.

We thank uncle Matt for playing piano, big cousin Madeleine and auntie Anne for vocals, Katie on harp, and Dot for planning and playing piano.

William's family (mom and dad, auntie and uncles, and grandparents) took part in the service. Big cousin, Noah too. Uncle Patrick and Auntie Nikki were with us in spirit :) Hearing everyone read their part and being there for baby William made the service very special.

As we share the service over the next couple of days months, we share our love for William and express our thanks to all of you.

xoxo,
Liz and Tom

Madeleine singing Twinkle Twinkle Little Star with accompaniment by Katie Lynch Koglin on harp.

Thank you

William’s memorial service was yesterday, and it was an incredible day filled with love. THANK YOU for celebrating him with us. Every hug, every smile, all your kind words meant so much to us. We will never forget him and we will never forget that day when we remembered him in such a special way.

We were so touched by all of you.

More memories and photos to come, for those who could not attend.

xo,

Liz and Tom

William's special basket, his bear, his candle (that was lit in honor of him), and a bouquet of sweet william flowers on display for the service. The candle remained lit for the entire celebration.