Sunday, December 7, 2008

Bree's Tree: Smile Down from Above

This is Bree's tree that we did for the Festival of Trees, a benefit for Primary Children's Medical Center where she spent part of her life.
It is purple and "glammed out" like our little princess Bree-Elle. We miss her so much.
She would most likely have been our drama queen. She had the funniest personality. Of course, now we will never know what she would be like now...
Her tree is named "Smile Down from Above" and we hope that each day she sees us and smiles down and is proud of us.
The tree was purchased by Nu Packaging and we appreciate them buying her tree.
WE LOVE YOU BumbleBree!

Sunday, November 23, 2008

Time with those one loves, is life's greatest gift.

Dear Heaven,
I just stumbled upon a wonderful quote:
"Time with those one loves, is life's greatest gift."
That is why my heart is broken and why life is so tragic and heartbreaking and lonely and wrong. I am missing out on life's greatest gift, the time to be with you. And it is soooo dark and desperate to know that I will never have that gift the rest of my life.
I will never see your face, hold you in my arms, talk with you, and do the nothingness of just being with you.
I am thankful for the little time we had because that was a precious gift of my lifetime. But to know I will never have that gift again is just so powerfully painful and raw and cruel.

Wednesday, November 19, 2008

In Loving Memory Christmas Ornaments


Every year, they do a memorial Christmas tree at the funeral home and at the support group. I always struggle with what to do for the girls' ornaments. This year, I decided to do paper ornaments like the ones above. I put their faces on wings and cut them out. Then I glued with glue dots ribbon on to the back as a hook and adhered another paper with the words "In Loving Memory etc." onto the back. They turned out way cute and different then the usual ornament.

I digital scrapped their faces onto the wings.

Saturday, November 15, 2008

My Angel Son

I have two angels in heaven - my girls Bree-Elle and Chloee who have died. But I also have an angel son that is here with me. He keeps me going and he is the light of my life. He is an angel too. He makes the sun shine down. Everyday he saves my life.
I love this scrapbook page of him.
Credit: Jofia Devoe

Thursday, October 30, 2008

Saying Goodbye Book Review

****
Saying Goodbye
By Jim and Joan Boulden
This is a children’s workbook/coloring book. It is a National Hospice Organization award winner. It talks about the natural cycle of life and death, common feelings for children after someone dies, what children can do that might help them grieve, and that love and memories are forever. Children can draw their loved one, what death is, what life is, and their memories. There is a place to write a goodbye letter at the back of the book. It’s a pretty good book. I personally didn’t choose this one for my son because I didn’t like how it doesn’t tell about what happens to the dead person – it only talks about the dead body. They probably left that part open so you could talk with the child about those questions they might have and specifically say what you believe which is nice because it leaves it open to many different beliefs.

Chicken Soup for the Grieving Soul Book Review

****
Chicken Soup for the Grieving Soul
By Jack Canfield and Mark Victor Hansen
This is one of the Chicken Soup for the Soul books. It is a compilation of stories and also quotes. There will be some that you’ll like and others that just don’t hit home. The problem is you have to read all of them…. There was one story that really angered me when I read it. But of course, there were other stories in the book that I really liked. Some made me cry of course. However, if you’re at that stage of grief where some things just make you so angry that it totally sets you afire (which many of the grieving go through that!), this might not be the best choice.
It is lengthy, but you can pick and choose what to read so it would be ok for the short attention and energy span of the grieving.

Wishes for One More Day Book Review

*****
Wishes for One More Day
By Melanie Joy Pastor
This is a sweet book about all the things you wish you could do with your loved one. It would be a great book to read and then have children create their own book of wishes – things they would do with their loved one if they could. A grandfather's death inspires his grandchildren to create a book of wishes in this sensitive portrayal of dealing with the loss of a loved one. When Anna and her little brother Joey hear the sad news about their Poppy's death, they begin to think about what they would do if they could have one more day with him. They smile thinking about Poppy’s crazy birthday hat, giggle at the silly songs Poppy used to plunk out on the piano, and laugh out loud at the weekly chicken-soup game they played with him at the deli. As the list grows into a pile, the pile becomes a book—a book of wishes for one more day with Poppy—or, as their mother explains, a memory book of the love and fun they shared with him, since all of their wishes have already come true. This treasured memento celebrates Poppy’s life and helps Anna and Joey keep his memory alive for years to come.

Running with Angels Book Review

*****
Running with Angels
By Pamela H. Hansen
The true life story of a mother who loses 100 pounds and runs a marathon following the loss of two children and other challenges. It is an inspiring story.
Please note that it is a religious book (of the LDS faith) and sometimes religion can be a sensitive subject for the grieving!!

Mommy, Please Don't Cry: There Are No Tears in Heaven Book Review

****
Mommy, Please Don't Cry: There Are No Tears in Heaven
By Linda Deymaz
I personally own this book and really like it. It is meant for mothers who lose a young child. It was written by a mother who lost her daughter in 1995. She writes a beautiful dedication letter to all mothers who have lost a child. The book describes what heaven is like and how wonderful it is. The only thing I don’t like is the implication that mothers should not cry. I personally feel that mothers sometimes (depending on the person) need and have to cry to release their grief. But at the same time, this book may bring comfort to you in the thought of your child in such a wonderful place. It also includes a journal at the back of the book for recording thoughts about your child.
Please note that it is a Christian book and has references to the Bible and so forth. Religion is sometimes a touchy subject with the grieving!!!

Understanding Your Grief Book Review

*****
Understanding Your Grief
By Alan Wolfelt, Ph.D.
I often have a hard time with books written by professionals. They often just don’t get it – understanding my grief and how hard it is. But Dr. Wolfelt is so wonderful! I own this book and the accompanying journal and it is highlighted and marked everywhere. He really gets it and his book has been so helpful to me.

We Were Gonna Have a Baby, But We Had an Angel Instead Book Review

*****
We Were Gonna Have a Baby, But We Had an Angel Instead
By Pat Schwiebert
Another one of my favorite grief books! Pat Schweibert is wonderful. This book is about a family (with one son) who was going to have a baby but something bad happened – the baby died. It talks about how hard it is and how different it is. It is appropriate for miscarriage, stillbirth, and infant loss. I personally read it to my 4 year old when our Bree-Elle died and he could totally relate to and understand the book. Love it, love it, love it.

Tear Soup Book Review by Pat Schweibert and Chuck DeKlyen

*****
Tear Soup
By Pat Schweibert and Chuck DeKlyen
One of the BEST grieving books out there! It uses an analogy of cooking soup to working through grief stressing how some people “cook soup” differently than others. Short enough to keep the attention and energy span of the newly bereaved too. Appropriate for any age!

Tuesday, October 28, 2008

Grief and Loss Poem or Quote

"Grief is itself a medicine." - William Cowper

Grief and Loss Quote

"We can see the smoke of a burning home, but who can know of a burning heart?" - Malay Saying

Remembrance Poem or Quote

"Sometimes when one person is missing,the whole world seems depopulated." - Lamartine

Grief and Loss Quote

"You don't heal from the loss because time passes, you heal because of what you do with the time." - Carol Crandall

Grief and Loss Quote

"To know the road ahead, ask those who are coming back." - Chinese Proverb

Grief and Loss Quote

"Whole years of joy glide unperceived away, while sorrow counts the minutes as they pass." - William Havard

Grief and Loss Quote

"Two in distress make sorrow less." - Proverb

Grief and Loss Quote

With grief, "it isn't just being a good person that has made me tired, but being any kind of person at all." Harriet Jones

Grief and Loss Quote

"Tearless grief bleeds inwardly." - C. N. Bovee

Sympathy Grief Poem

"A thousand goodbyes come after death - the first six months of bereavement." Alan Gregg"

Grief and Loss Quote

"A thousand goodbyes come after death - the first six months of bereavement." Alan Gregg

Sympathy verse for loss of Infant

"What is life's heaviest burden?" he asked. And the mother answered sadly, "To have nothing to hold." - Unknown

Friday, October 24, 2008

Just A Dream Lyrics by Carrie Underwood

This song is sooo wonderful. I am so excited to add it to my lyrics for the grieving collection. It is best for the loss of a boyfriend/husband but the chorus really applies to any death of a loved one. There were so many times that I felt like I was in a dream while my girls were battling their terminal illnesses. I remember saying to my husband, "This just has to be a dream."
My favorite line - it's so hard to pick!! - it's the whole chorus "Baby, why'd you leave me, why'd you have to go? I was counting on forever, now I'll never know. I can't even breathe. It's like I'm, looking from a distance, standing in the background. Everybody's saying, he's not coming home now. This can't be happening to me. This is just a dream." Wow!

Just a Dream
written and performed by Carrie Underwood

It was two weeks after the day she turned 18
all dressed in white, going to the church that night
She had his box of letters in the passenger seat,
six pence in her shoe, something borrowed, something blue
and when the church doors opened up wide she put her veil down
trying to hide the tears
oh she just couldn’t believe it
she heard the trumpets from the military band
and the flowers fell out of her hands

Baby, why'd you leave me, why'd you have to go
I was counting on forever, now I'll never know
I cant even breathe
It's like I'm, looking from a distance, standing in the background
Everybody's saying, he's not coming home now,
This can't be happening to me
This is just a dream

The preacher man said let us bow our heads and pray
lord please lift his soul and heal this hurt
then the congregation all stood up and sang the saddest song that she ever heard
then they handed her a folded up flag and she held on to all she had left of him
oh and what could’ve been
and then guns rang one last shot and it felt like a bullet in her heart

Baby, why'd you leave me, why'd you have to go
I was counting on forever, now I'll never know
I cant even breathe
It's like I'm, looking from a distance, standing in the background
Everybody's saying, he's not coming home now,
This can't be happening to me
This is just a dream

Baby, why'd you leave me, why'd you have to go
I was counting on forever, now I'll never know
Ohh i'll never know
It's like I'm, looking from a distance, standing in the background
Everybody's saying, he's not coming home now,
This can't be happening to me
This is just a dream

Monday, October 20, 2008

A Family Collage for when a loved one has died


Here it is.... My 2008 Family Collage
It is that dreaded time again in our lives when I'm asked for a family photo. This time it was my son's school who asked every child to bring in a family photo. That is such a hard thing for families that have had a loved one die. What should you do? Send in a photo without, in my case, my daughters? That doesn't feel right. How can you send a photo that is supposed to be a family photo that doesn't have the whole family in it. Send in an old photo? Well, that's not an option because Bree and Chloee were never alive together. We never had our whole family on this earth together.

It's a huge dilemma of the reality of death for families that are grieving. I've tried lots of things such as putting orbs in photos for them, having an angel bear in their place, wearing a necklace that had something from each girl on it, making a collage with different photos... Nothing seems right because nothing can replace an actual photo with everyone in it.

This year, I decided to do a collage. I asked my son to draw pictures of his family members. (He's in preschool and their drawings are sooo precious! Don't you LOVE my hair!) Then, I used some digital scrap clip art from Shabby Princess and put them into a collage. It is definitely not want I really want - I want a real family photo with all of my children in it, but it's going to have to do. It's better for me than sending in a photo without my girls and acting/pretending/letting others believe like they don't exist.

But that's just me, every grieving parent has to make their own decision about what to do with the hard reality of family photos.

(I took my son's name off for internet safety issues.)
Credits to Shabby Princess for digiscrap clip art.

Monday, October 13, 2008

A Thank You Scrapbook Page

Sometimes I feel so sad that I have no new photos to scrap of my girls. Slowly, I've realized that once in a while I get the opportunity to scrap new things related to my daughters that have died. This layout is a great example of how you can continue to scrap and make memories that involve your child even if you have no new photos of your child.
One of my daughters' nurses (and my good friend) sent me flowers last Mother's Day. That was such a kind and caring thing to do and it meant sooo much to me. It was the first Mother's Day since Bree died (5 months after) and the third since Chloee died. I was having a horrible time of it and grief was overpowering me. Then these flowers came and it was like I just knew that Lisa was acting in behalf of my girls. I felt like they were able to tell me they loved me because of Lisa's thoughtfulness. I will never forget that Mother's Day and I will never forget my good friend and what a difference her flowers made.
Credits: Gina Miller and Amanda Rockwell

Thursday, October 9, 2008

Think of Me Lyrics

This is a song from Phantom of the Opera. David Archuleta sang it on American Idol last year and I fell in love with it. It wasn't written to be a grieving song but it is a wonderful grieving song and can be from the perspective of the person who is grieving or of the person who died. I adore the whole song by my favorite line is "There will never be a day, when I won't think of you. Think of me, please say you’ll think of me."

Think of Me Lyrics
Written by Hart, C; Stilgoe, R; Lloyd-Webber, A.

Think of me, think of me fondly, when we've said goodbye.
Remember me once in a while - please promise me you'll try.
When you find that, that once again, you long to take your heart back and be free,
If you ever find a moment, spare a thought for me.
We never said our love was evergreen, or as unchanging as the sea.
But if you can still remember, stop and think of me.
Think of all the things we've shared and seen.
Don't think about the things which might have been.
Think of me, think of me waking, silent and resigned.
Imagine me, trying too hard to put you from my mind.
Recall those days, look back on all those times,
think of the things we'll never do.
There will never be a day, when I won't think of you.
Think of me, please say you’ll think of me.
Whatever else you choose to do,
There will never be another day,
When I won’t think of you.
Never be another day, when I will never think of you.

Written by Hart, C; Stilgoe, R; Lloyd-Webber, A.
Performed by various artists. I personally love the David Archuleta version.

I Will Always Be With You Lyrics

This song is from the movie All Dogs Go to Heaven 2. It caught me by surprise in the movie theater and I was bawling during the show. It is a beautiful song. Unfortunately, I can't find anywhere to buy it. If you know where to buy it, please let me know. My favorite line - "I will always be with you, makes no difference where your road takes you to. Even if we’re apart, now we’re joined at the heart."

I Will Always Be With You
Music: Barry Mann, Nelly Ward
Lyrics: Cynthia Weil, Mark Young

I will always be with you,
Makes no difference where your road takes you to.
Even if we’re apart,
Now we’re joined at the heart.
Though our moment may be gone,
You and I will still live on.
I will always be with you,
I’ll be by your side whatever you do.
Other memories may fade,
But the ones that we made,
Are eternal as a star.
Now I’m part of who you are,
And I’ll be there with you in the sound of your laughter.
I’ll be in the tears you cry.
'Cause the way you and I have touched one another,
Doesn’t end with goodbye.
I will always be with you,
Like a guardian angel constant and true.
When you’re lost in the night,
And you can’t see the light,
My love will see you through.
I will always be there.
You’ll have me there.
I will always be with you.

Music: Barry Mann, Nelly Ward
Lyrics: Cynthia Weil, Mark Young

Dream of Me Lyrics

This is also not technically a grieving song, but it's perfect for those of us who wish to dream of our loved ones that have died! My favorite line - "So let me close my eyes and sleep, a chance to dream. So I can see the face I long to touch, to kiss. But only dreams can bring me this."

Dream of Me
Performed by Kirsten Dunst

Let me sleep
For when I sleep I dream that you are here
You’re mine
And all my fears are left behind
I float on air
The nightingale sings gentle lullabys
So let me close my eyes
And sleep
A chance to dream
So I can see the face I long to touch, to kiss
But only dreams can bring me this
So let the moon shine softly on the boy I long to see
And maybe when he dreams
He’ll dream of me
I’ll hide beneath the clouds
And whisper to the evening stars
They tell me love is just a dream away
Dream away
I’ll dream away
So let the moon shine softly on the boy I long to see
And maybe when he dreams
He’ll dream of me
Dream of me

Performed by Kirsten Dunst

Angels Lyrics

A beautiful song for the grieving. It seems to apply best to the loss of a spouse but really to anyone who has lost a loved one. I lost two daughters and I LOVE this song. My favorite line - "When I come to call she won't forsake me, I'm loving angels instead."

Angels
Written by Robbie Williams

I sit and wait.
Does an angel contemplate my fate?
And do they know the places where we go,
When we're grey and old?
'Cause I have been told that salvation lets their wings unfold.
So when I'm lying in my bed, thoughts running through my head,
And I feel that love is dead. I'm loving angels instead.
And through it all she offers me protection,
A lot of love and affection whether I'm right or wrong.
And down the waterfall wherever it may take me,
I know that life won't break me.
When I come to call she won't forsake me, I'm loving angels instead.
When I'm feeling weak, and my pain walks down a one way street.
I look above and I know I'll always be blessed with love.
And as the feeling grows, she breathes flesh to my bones.
And I feel that love is dead, I'm loving angels instead.
And through it all, she offers me protection.
A lot of love and affection, whether I'm right or wrong.
And down the waterfall, wherever it may take me,
I know that life won't break me.
When I come to call, she won't forsake me. I'm loving angels instead.
And through it all she offers me protection.
A lot of love and affection, whether I'm right or wrong.
And down the waterfall, wherever it may take me,
I know that life won't break me.
When I come to call, she won't forsake me. I'm loving angels instead.

Written by Robbie Williams
Performed by various artists such as Jessica Simpson and David Archuleta

Heaven Needs Angels Lyrics

My very favorite lyrics for the loss of a baby. This song won a songwriting competition. My favorite line - "Where do you go to hide all of the pain? Hold me tonight. I just want to be by your side." and "A road down from heaven is the path which she came. Returned back to home when God called her name."

Heaven Needs Angels
By Brandon Silveira

Heaven needs Angels and hearts that are kind.
Sent for my baby, said “Angel, it’s time.
You come meet me.” But she completes me.
Children are a blessing from God to us all.
Sent down from heaven to keep faith in our hearts.
Sometimes we’re tested. It must be destined.
What do you do when God calls for you?
Where do you go to hide all of the pain.
Hold me tonight. I just want to be by your side.
Sometimes we think we could have done this and that.
Keep living our lives as we did in the past.
But it’s inevitable. This pain’s unbearable.
A short time on earth is all that you’ll miss,
For an eternity with God in complete happiness.
Please know you are missed. I hope you hear this.
What do you do when God calls for you?
Where do you go to hide all of the pain?
Hold me tonight. I just want to be by your side.
Heaven needs Angels and hearts that are kind.
Sent for my baby, said, “Angel, it’s time.”
A road down from heaven is the path which she came.
Returned back to home when God called her name.

By Brandon Silveira

I Can Only Imagine Lyrics

This is technically not a grieving song (It is a Christian song) BUT it says so many things about what we can only imagine is to come. My favorite line - "I can only imagine what it will be like, when I walk by your side." I can only imagine...

I Can Only Imagine
By Bart Millard
Performed by various artists such as Mercy Me, Jeff Carson, Chris Tomlin

I can only imagine.
What it will be like,
When I walk by Your side.
I can only imagine,
What my eyes will see,
When Your Face is before me.
I can only imagine.
Yeah.
Surrounded by Your Glory,
What will my heart feel?
Will I dance for you, Jesus?
Or in awe of You, be still?
Will I stand in Your presence?
Or to my knees will I fall?
Will I sing Hallelujah?
Will I be able to speak at all?
I can only imagine.
I can only imagine.
I can only imagine,
When that day comes,
And I find myself standing in the Sun.
I can only imagine,
When all I will do is forever, forever worship You.
I can only imagine.
Yeah, I can only imagine.
Surrounded by Your Glory,
What will my heart feel?
Will I dance for you, Jesus?
Or in awe of You, be still?
Will I stand in Your presence?
Or to my knees will I fall?
Will I sing Hallelujah?
Will I be able to speak at all?
I can only imagine.
Yeah, I can only imagine.
Surrounded by Your Glory,
What will my heart feel?
Will I dance for you, Jesus?
Or in awe of You, be still?
Will I stand in Your presence?
Or to my knees will I fall?
Will I sing Hallelujah?
Will I be able to speak at all?
I can only imagine.
Yeah, I can only imagine.
I can only imagine.
Yeah, I can only imagine.
I can only imagine.
I can only imagine.
I can only imagine.
When all I will do is forever, forever worship You.
I can only imagine.

By Bart Millard
Performed by various artists such as Mercy Me, Jeff Carson, Chris Tomlin

I Believe Lyrics

One of my very favorite grieving songs. It is just beautiful. My favorite line - "There are more than angels watching over me."

I Believe
By Skip Ewing and Donny Kees
Performed by Diamond Rio

Every now and then, soft as breath upon my skin.
I feel you come back again.
And it’s like you haven’t been gone a moment from my side,
Like the tears were never cried,
Like the hands of time were pulling you and me.
And with all my heart I’m sure, we’re closer than we ever were.
I don’t have to hear or see, I’ve got all the proof I need.
There are more than angels watching over me.
I believe. Oh, I believe.
Now when you die, your life goes on.
It doesn’t end here when you’re gone.
Every soul is filled with light. It never ends, if I’m right.
Our love can even reach across eternity.
I believe. Oh I believe.
Forever you’re a part of me, forever in the heart of me.
I would hold you even longer if I can.
Oh the people, who don’t see the most, see that I believe in ghosts.
If that makes me crazy, then I am.
Cause, I believe. Oh, I believe.
There are more than angels watching over me.
I believe. Oh, I believe.
Every now and then, soft as breath upon my skin,
I feel you come back again.
And I believe.

By Skip Ewing and Donny Kees
Performed by Diamond Rio

I Can Only Imagine Scrapbook Layout



I can only imagine so many things... This scrapbook layout is all about the things I can only imagine about the girls. It was inspired by the I Can Only Imagine song written by Bart Millard and performed by various artists. I like the one by Mercy Me but there is a version by Jeff Carson and Chris Tomlin. I added and changed the lyrics to fit my life situation.
I love this page because it is what I can only imagine the girls are doing. Chloee is swinging and loving it. Bree-Elle is touching a butterfly while flying through the air. I can only imagine...
Credits: Vera Lim

Wednesday, October 8, 2008

A Scrapbook Angel Page for Chloee


How do you scrapbook pages for a child who is now an angel? It is so hard sometimes to depict what you think they are like now. That's why I love this page. It's like Chloee is flying through the air -an angel - with the wind blowing her face and she is just free and happy. I imagine her that way. Her life was soooo hard. My greatest hope for her now that she is gone is that she is free from her pain and perfectly happy. I imagine she watches down on us like this scrapbook page and I hope she is proud of us.
Credits: Jofia Devoe

Tuesday, October 7, 2008

Everybody wants to go to heaven?

There is a song by Kenny Chesney that is #1 right now. The lyrics go like this:
Everybody wants to go to heaven
Get their wings and fly around
Everybody wants to go to heaven
But nobody wants to go now
Someday I want to see those streets of gold in my halo
But I wouldn`t mind waitin` at least a hundred years or so
Everybody wants to go to heaven
It beats the other place there ain`t no doubt
Everybody wants go to heaven
But nobody wants go now

I could not disagree with a song more. Everybody loves this song and I just hate it. How I would LOVE to go to heaven right now and see my girls - in a second I would if I could - especially if I could take my husband and living son. Who is this "everybody" - certainly not the grieving community. Not anyone who has lost a child or a loved one....
What a sad song for people that are grieving.

Sunday, July 20, 2008

Thank you to Mary-Ann Bowman

On Friday, we went to Primary Children's hospital to say goodbye to our good friend Mary-Ann Bowman. Mary-Ann was the bereavement coordinator for the hospital and she helped us when Chloee died and was part of the palliative care team that helped Bree have the best life possible. She spoke at Bree's funeral when she died and she made hand and foot molds when Chloee died.
Some people say concerning grief that nothing can help, that nothing will bring their child back. And while that is true, my daughters are not coming back,it is, in my opinion, a common grief myth that nothing can help. Mary-Ann Bowman, as well as many others, significantly helped us through our journey and we are so thankful for that. Mary-Ann listened to us, talked with us, empathized with us, helped us formulate a plan for Bree, and was our friend. She genuinely cared and listened - the two most important things you can do for someone that is grieving.
And so today I want to thank her and wish her good luck in her teaching position at the University of Montana. Thank you Mary-Ann for everything!
Below is a talk given by Mary-Ann at Bree-Elle's funeral. It will be helpful to all those that have lost a child and to those trying to support parents that have lost a child.

All copyrights to Mary-Ann Bowman
Mary-Ann is in the process of writing a book about how to support parents that have lost a child.

Talk Given at Bree-Elle Sube’s Services
Mary-Ann Bowman, Ph.D., LCSW
Primary Children’s Medical Center
msontag@qwest.net
There are no words that can ever make sense out of the death of a child – I won’t even try. Oh, it is so tempting to want to fill that vast empty void of unknown with some kind of meaning, but the words that make meaning out of a child’s death typically only comfort the one saying the words. And aren’t we here to comfort those who mourn?
And so, let us consider for a few minutes this journey that Jake and Denise and their children have taken together so that we might better know how to comfort, how to support and how to remember two beautiful little girls in ways that might best serve their family.
I first met Jake and Denise on the night that Chloee, their older daughter, died at Primary Children’s Medical Center. I was called in to provide support and to make molds of Chloee’s hands. She was a beautiful little person, and Denise and Jake were surrounded by staff who loved them and who loved Chloee. It was a tender time, one that I feel privileged to have experienced.
Bringing a child into this world is such an act of faith. There are no guarantees that things will go well, and yet so many of us take on parenthood with a naïve optimism that our children will be perfect in every way.
Jake and Denise lost that innocence, that blissful illusion that all children grow up healthy. With the death of Chloee, so too died the ability to believe that all children live happily ever after.
But what is remarkable to me is what they did not lose – their faith. There are no words to describe the aching devastation that is grief following the death of a child – it is truly an emotional Ground Zero.
And yet these two people, connected by their love for each other and with full knowledge that they might find themselves walking the same path of heartache, welcomed Bree-Elle into their family. What an act of faith, optimism and sheer courage that was.
And what a tribute to Chloee and to Tyson – that Jake and Denise believed that the joy of children outweighed the risk of heartache.
I remember the sick feeling I had when I learned that Bree-Elle had the same disorder as Chloee. Life can be SO unfair and the deserving indeed can be cheated in such cruel ways. There is no way to put a positive spin on the hand this family has been dealt, and we should not even try.
This news was, of course, devastating in ways that none of us can truly comprehend. And yet, Jake and Denise squared up and faced it. Not only that, they took it on and made the experience their own.
With Chloee and her experiences as an ever-present guide, Jake and Denise thoughtfully, lovingly considered what they wanted for their baby girl. Who among us can imagine sitting and talking about how we want our child’s death to be – and yet that is exactly what Jake and Denise did. With our palliative care team, they detailed what they wanted and did not want for Bree-Elle at the time of her death.
By doing this, they created a plan for her life as well. This plan was based on the goals of reducing suffering, enhancing Bree-Elle’s quality of life and having as much time with their daughter as possible.
Jake and Denise did an amazing job balancing a multiplicity of demands, emotions, and experiences. It is so hard to know how far to go to keep a child with a life limiting illness with us, and it is normal for parents to want that time to be as long as possible.
Jake and Denise never expected Bree-Elle to bear the burden of suffering in order to meet their own desires to have her here. Always it was about Bree-Elle and what was best for her.
And so they looked back on what Chloee’s experiences had been and then looked forward and shaped Bree-Elle’s experiences – with courage, with faith and with a love that allowed them to do things that no parent thinks he or she can do.
Bree-Elle lived and died at home because that was what her parents thought was best for her. I remember them talking about their goals for her death – that it would be with them, at home in their big bed. But they were scared – how could they manage her without the support of the nurses that so loved them? Would their house be filled with sad memories if Bree-Elle died there? What about Tyson – how would this impact him?
But their fears were not enough to stop them from doing what they believed was best for their child and for their family, and so with the help of many, Bree-Elle’s life was spent at home, with her family and with as much normalcy as could be managed in such a situation.
What a gift Denise and Jake gave Bree-Elle and Tyson. And what a gift Chloee gave to her family – because it was her experiences that taught Jake and Denise what needed to be done for her little sister.
A child’s death forever changes a family and those who love them.
The experience of grief is lifelong – it does not go away after a certain amount of time. Yes, it softens but always there is a place in your heart and your soul that yearns for that child.
There are no stages to grief – it is not that organized of a process. Rather, grief is like entering chaos, with emotions and experiences swirling about you in such a way that normal life feels impossible at times. The job of grief is to re-order the chaos – and that takes time – a long time.
We are familiar with the sorrow of grief, but it is so much more than that. Grief is emotional – overwhelming sorrow, a raging anger, guilt at what was undone or unsaid. Grief also impacts our minds. It is normal to be confused, and have trouble remembering things. Grief is physical – people who are grieving tend to be very tired and yet sleep is often hard. It is normal to have physical symptoms of grief.
Grief impacts our abilities and desire to interact with others. It all seems so meaningless – and somehow wrong that normal life is going on when something so terrible has happened. A bereaved parent’s world has stopped – and yet everyone else goes forward. It is an isolating experience to lose a child.
And grief raises all kinds of spiritual issues for many people. How could God let this happen? Why us? What did we do? Why do other parents who do not care for their children escape this heartache and devastation? What kind of a God causes such suffering to a baby?
Resist the temptation to answer these questions for these are expressions of pain, and therefore have no answers that anyone else can provide. Each parent – in his or her own way – finds the answers that are needed.
The spiritual crisis that so often accompanies grief is personal and is between that parent and God, and other people just seem to get in the way.
I am often asked how to best support bereaved parents, and so I share some ideas because I know you are here because you love Denise and Jake and Tyson want to help.
First, remember that this is not a problem to be fixed. Unless you have resurrection powers, you cannot make this all better. I have found accepting that helplessness is critical to supporting bereaved parents because the more we try to make this better, the worse we seem to make things.
Second and related to the first, skip platitudes. Platitudes are those things we say that are intended to make this all better – like, “she is in a better place” or “It was God’s will”. One family was told to think of all the money they would be saving since their teenage son who died would no longer be needing to go to college!
Let me tell you what the experts say. Denise is on an email grief support group and had kept the group updated on Bree-Elle’s condition. Earlier this week she posted two words: “she died”. The responses from the other parents were immediate and reflect their expertise: none told Denise what she should or should not do, or should or should not feel. or tried to make meaning out of Bree-Elle’s death. Instead, the messages simply said how sorry they were, and they sent hugs and love and support.
Parents will find their own meaning and their own answers – what they need from us is love, concern and expressions of shared sorrow.
Third, bereaved parents need understanding and acceptance. This deep pain and grief will not go away anytime soon and so they need us to be compassionate and patient as they work their way through the chaos of grief.
We are loving and supportive when we place no time limits on grief, and when we recognize that grief prevents people from being able to function in normal ways and at normal capacity for some time.
Bereaved parents are like a saturated sponge – there is no room for one more bad thing to happen. And when it does, the reaction can be a flood – and they need us to be understanding and recognize that the big reaction is not really from losing the keys -- but from losing the child.
We support bereaved parents when we do not take anything personally, and when recognize that although unseen, their wounds are deeper than we can ever imagine, and sometimes pain makes people lash out.
Finally, we can support the bereaved by not forgetting. Yesterday I was talking to a bereaved father and he shared how hard it was when people did not talk about his twin sons who died. Bree-Elle and Chloee lived and are loved – remember them.
And remember that this family will be hurting long after you return to normal life – let them know that you have not forgotten. Cards and letters and flowers and meals will be appreciated even more in the weeks and months ahead.
Bree-Elle lived her lifetime and it was too short, but it was hers. Her parents embraced and loved her even as they knew she would be the cause of great sorrow. Their experiences can teach us much about love, about courage and about the human spirit – and so that is Bree-Elle gift to all of us.
Love triumphs over grief. Maybe not today or tomorrow, but eventually it does and it will. We are heartbroken that Bree-Elle has died, but rejoice that she lived, that she was loved, and that she will forever be part of this family.
I speak for all of us from Primary Children’s Medical Center when I say that are honored to have known Bree-Elle and been part of her life, and Denise and Jake -- we are inspired by your courage, your faith and your love for your children and for each other. Thank you for letting us be part of such a tender time in the life of your family. I think I speak for all of us here when I say that we love you and extend our deepest sympathies.