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I know there are many parents who are scared when they get the “incompatible with life” diagnosis.  They know that diagnosis equates with “death”….and that isn’t what a pregnancy is suppose to look like.  I am sharing the following because I was scared too. I knew I would be holding my deceased child, and I didn’ t know if I would find the strength to do it, but I knew I had to, somehow.

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“You never know how strong you are until BEING strong is the only choice you have.”

I’m not sure where I first read the above statement, but how true it is. 

I was praying for a miracle but  planning for a funeral–I held onto the hope that I could take Dekar home and be able to care for him and enjoy his little life.  I discussed feeding and care options with nurses and doctors.  I knew it probably wouldn’t happen, but if it did I wanted to be prepared.  But there was NOTHING I could do to get myself psyched up and ready to hold my deceased son!  Nothing!

I remember telling my hospice counselor, Pam, that I wasn’t worried about taking home a special needs child–I could educate myself on that; what I wasn’t sure about was whether I would have the strength to hold my dead baby.  The thought of it terrified me–how do you prepare yourself for that?  She assured me that I already had the strength.  Well, she could say that until she was blue in the face, but I wasn’t convinced.  I don’t know if scared is the right word….maybe anxious better describes my feelings at the time.  I didn’t know what to expect–but I knew it wasn’t going to be easy.

All I could do was pray and breathe.  Breathe in; breathe out.  Each day after the diagnosis I wondered when Dekar’s life would end.  I wondered if I’d be blessed to be able to look into his eyes.  I wondered how I would endure the pain of seeing my son, lifeless in my arms.  How would I have it in me to face death so up close and personal and ALSO endure seeing my husband and other children face the loss, too?  

Would my arms be strong enough to carry death?  The death of my baby?  I knew I didn’t have that kind of strength in me.  But I also knew I had no choice–when it came to that time, being strong would be the ONLY choice I would have. 

Although I don’t know the exact moment that Dekar’s eyes met Jesus, I do remember looking at him and realizing that he didn’t just look like a little baby any more–he now looked like royalty.  In just a few moments time he took on the appearance of a little prince, with facial features totally relaxed, yet appearing strong and stately at the same time.  

I never expected that the last couple hours of holding Dekar would give me the most smiles.  Here I was , holding the deceased body of my son–the moment I was previously fearing and dreading–and I was actually smiling.  He looked glorious to me.  Yes, I cried many more tears, but he looked so peaceful and beautiful that  I couldn’t help but smile.  His appearance, although lifeless, was magnificent and noble.

When the time had come for my last good-bye, I remember handing over Dekar to the funeral director and saying, “It’s okay.” 

 “It’s okay?!”   Perhaps it was exhaustion speaking, but more than likely it was that in that moment I realized that I had been given the glorious gift of fleshing out the verse, “….My power is made perfect in weakness.”

I can still vividly remember that initial conversation with Pam, telling her I wasn’t sure I could handle holding my dead son.  And I now look back and think of how amazing it is that I actually did it, and how it was not all what I presumed it would be.  I thought holding my deceased child would be terrifying, but the last moments of holding him actually were precious.  Although his body was lifeless and his passing was heart wrenching, being able to soak in his beauty is something I would never trade for anything.  Dekar’s presence made me smile, even when I could no longer look into his eyes.

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I feel compelled to add that I recognize that I was “fortunate” to have known that Dekar would not live long if he would be born live at all.   (I don’t like the word “fortunate” to be connected with the diagnosis of a terminal pregnancy, but because of the diagnosis we were given the gift of preparation.)  Although the knowledge didn’t make things easier, it did afford us the ability to prepare in many ways, including having the opportunity to wrap our brains around the fact that we would be holding our deceased son.  Many parents are not given that “luxury” and the unexpected death of their child takes them by storm.  It is tragic and heartbreaking.

We are fortunate to live in a time where infant death and the very real grief that goes along with it is being recognized and not shoved into a dark closet and never talked about.  The NEWSWEEK article “A Vast and Sudden Sadness” covers the subject quite eloquently.  Infant death is a hard thing for all involved and the more people are educated on this subject, the better.

There are many organizations and ministries now that reach out to those who have lost a baby.  Many hospitals now hold grief support groups for those who suffered through miscarriage or early infant loss.  Parents like me blog about their children and their experiences–it all helps in the healing process. 

Now I Lay Me Down to Sleep recognizes the importance of creating memories in order to help cope with the grief of a newborn loss.  These memorial photos are taken by volunteer professional photographers and are true heirlooms that will be forever treasured by the parents of the baby that was taken too soon.   NILMDTS is still expanding and trying to get into as many hospitals as possible–please consider donating your time, talent and/or money to this worthwhile organization. 

I did not die young.
I lived my span of life,
Within your body,
And within your love.

There are many
Who have lived long lives,
And who have not been loved as me.

If you would honor me,
Then speak my name,
And number me among your family.

If you would honor me.
Than strive to live in love,
For in that love, I live.

Never ever doubt,
That we will meet again.

Until that happy day,
I will grow with God
And wait for you.
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MY MOM

My Mom is a survivor, or so I’ve heard it said.

But I hear her crying at night when all others are in bed.

I watch her lay awake at night and go to hold her hand.
She doesn’t know I’m with her to help her understand.
But like the sands on the beach that never wash away…
I watch over my surviving mom, who thinks of me each day.

She wears a smile for others…a smile of disguise.
But through Heaven’s door I see tears flowing from her eyes.
My mom tries to cope with death to keep my memory alive.
But anyone who knows her knows it is her way to survive.

As I watch over my surviving mom…through Heaven’s open door.
I try to tell her that angels protect me forever more.
But I know that doesn’t help her or ease the burden she bears.
So if you get a chance, go visit her…And show her that you care.

For no matter what she says…no matter what she feels.
My surviving mom has a broken heart that time won’t ever heal.

~~Author Unknown~~

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“A Pair of Shoes”

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.

Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.

I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.

To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.

I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some women are like me and ache daily as they try to walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.

No woman deserves to wear these shoes.

Yet, because of these shoes I am a stronger woman.

These shoes have given me the strength to face anything.

They have made me who I am.

I will forever walk in the shoes of a woman who has lost a child.

~~Author unknown~~

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Please Don’t Tell Them You Never Got to Know Me

It is I whose kicks you will always remember,

I who gave you heartburn that a dragon would envy.

I who couldn’t seem to tell time and got your days and nights mixed up.

It is I who acknowledged your craving for peach ice cream by knocking the cold bowl off your belly.

I who went shopping and helped you pick out the “perfect” teddy bear for me.

I who liked to be cradled in your belly and rocked off to dreamy slumber by the fire.

It is I who never had a doubt about your love,

It is I who was able to put a lifetime of joy into an instant.

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Cuddled in Heaven
Author: Charlotte Collins

We had so little time to share,
Too soon, I had to leave.
I know how much you love me,
I know how much you grieve.

I know how sharp your pain is,
I feel the aching in your hearts.
My life so quickly ended
Before it barely had a start.

I remember how you held me,
And kissed my face and hands,
You cuddled me so gently;
But, God had other plans.

I was your perfect angel,
From God you knew I came,
Suddenly He called me home again,
And now God holds my hand.

I know you’ll always miss me,
I understand your pain is hard to bear.
Just remember that I’m in heaven
And we’ll see each other there.

So smile when you think of me
and wipe away all of your tears
I’m cuddled now in heaven
By our family members here.

I’m waiting here in heaven,
And on the day we meet again.
I’ll be the first to smile and greet you,
When God calls you home to Him.

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Ask My Mom How She Is

My Mom, she tells a lot of lies,
She never did before
But from now until she dies,
She’ll tell a whole lot more.
Ask my Mom how she is
And because she can’t explain,
She will tell a little lie
because she can’t describe the pain.

Ask my Mom how she is,
She’ll say”I’m alright.”
If that’s the truth, then tell me,
why does she cry each night ?
Ask my Mom how she is
She seems to cope so well,
She didn’t have a choice you see,
Nor the strength to yell.

Ask my Mom how she is,
“I’m fine, I’m well, I’m coping.”
For God’s sake Mom, just tell the truth,
Just say your heart is broken
She’ll love me all her life
I loved her all of mine.
But if you ask her how she is,
She’ll lie and say she’s fine.

I am here in Heaven
I cannot hug from here.
If she lies to you don’t listen
Hug her and hold her near.

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I Hear Each Tear Fall On Her Face

My mom doesn’t know
I’m watching her
But I’m watching her just the same
and I hear each tear fall on her face
at the very mention of my name.

She says it sounds like
music to her ears
and can be heard over a crowd
Oh, I hear each tear fall on her face
when my name is said aloud.

I watch her stumble through each day
as she wishes the day would end
and I hear each tear fall on her face
as she talks of me with her friends.

But there are few
who truly understand
oh this I’ve heard her proclaim
and I hear each tear fall on her face
Will my mom ever be the same?

I know her smiles light up the sky
but I don’t see that smile today
oh but I hear each tear
fall on her face
Her blue skies have turned to gray.

Oh I send to her my warmest hug
with the rays of morning sun
then, I won’t hear a tear on her face
for I shall erase them one by one.

Yes, my mom doesn’t know I’m watching her
but I’m watching just the same
and if I hear a tear fall on her face
I’ll softly whisper her name.

Auther: Kaye Des’Ormeaux

This does not include all the pages and links posted–And it’s also not necessarily in order. (If you come across any dead links I would really appreciate knowing about them.  Please use “contact” form.  Thanks!)

Dekar’s Obituary and other SAMPLE INFANT OBITUARIES 

Dekar gave us a lifetime of Love during his short time on earthwhat I sent out to inform people of Dekar’s birth and passing–it’s his story, in a nutshell.

Babies with Trisomy 13 or 18 (Dekar is included)YouTube video made by NILMDTS with images of T13/T18 babies

Slideshow of our time with Dekar, courtesy of Now I Lay Me Down to Sleepthe slideshow made for us by NILMDTS.  Danielle Felton took the pictures and Christine Barrack made the slideshow. 

“Dekar Day”–the 27th of every monthhow we remember Dekar on a monthly basis

Praying for a Miracle; Planning for a funeralhow I continued on after Dekar’s diagnosis and the plans I made for his arrival and passing.  This is not what a pregnancy is suppose to “look” like.   I also talk about regrets I have, the grace I gave myself,  and what I wish I could do differently.

My Experience with NILMDTSI had never heard of Now I Lay Me Down To Sleep before-so I wrote about my experience with them so others would understand them a bit more from a parent’s perspective.

The Heavy Burden of Empty Armswhat others don’t see when they look at me….

A Full LifeDekar had one!

Dekar’s Memorial Ornament, 2008 and 2009

HopeLink to Steven Curtis Chapman’s song WITH HOPE, along with lyrics.  It’s a beautiful song that I discovered soon after finding Dekar’s first memorial ornament.

A nurse’s thoughts and perspective on the birth of Dekar–my main nurse graciously shared her thoughts and gave me permission to share them.

Forever an infantas my other children grow, Dekar remains forever an infant

Dekar’s Name in the Sandone lady’s mission to help remember other babies who died too soon.

My Mom, A Pair of Shoes, and other poemsI just like these poems–I am adding as I find them.  Updated 11/06/11

I guess…some people have never said anything about the passing of my son…..

Dekar Day, another loss, faithful friends, and a random act of kindnessthe title just about covers it

Bittersweet milestone

First Mother’s Day without Dekar

The babies that were meant just for me

Happy Birthday, DekarDekar’s first birthday a small pictorial tribute to his short life

I Miss Dekar

Dekar’s Foot Impression and 3d Foot and Hand molds and another memory item

Strength–Coping with the very end result of the “Incompatible With Life” diagnosisthe hardest part was not knowing if I could handle holding my deceased infant son. 

Smiling for SharonSharon’s daughter, Charlize, was diagnosed the same as Dekar–hypoplastic heart and Trisomy 18.  Charlize blessed her family with 58 days!  She is a beautiful little girl and I’m so glad Sharon shared her life with me.

The Mourning Boothnot sure what to say or do for somebody who is mourning?  Watch this. 

A Pleasant Reminderone small effort is forever ingrained in my memory as one of the kindest actions I have ever experienced in my life.

Still Making Memoriesa memorial snowglobe created by a talented photographer/friend.

Dekar’s 22nd month in heaven–a letter to Dekar

Final Diagnosis–Trisomy 18the email I sent to family and friends to relate the news of our baby’s Trisomy 18/hypoplastic left heart diagnosis 

Congratulations to Sharon and family on the birth of Charlize Rose!

Sharon gave birth to a beautiful little baby girl with Trisomy 18 and hypoplastic left heart on July 29th.  Today she  is enjoying her 27th day with her!!!  It simply makes me smile.  I am so happy that Charlize is being surrounded by the love of her family and giving love in return–I pray she has 27 more, and 27  more, and 27 more, and ……………….

Sharon shared some of the most wonderful, touching pictures with me–I posted just a few.  Isn’t Charlize gorgeous?

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From an earlier email Sharon said, “She is in the most wonderful wrapping Marge, just like your Dekar.”  I love that.   What a perfect way to describe our babies–in a “wonderful wrapping.”

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Enjoy your time together, Sharon, and thank you for sharing your message of hope.

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IMG_4822The hospital provided a little memory foot impression box.  It’s very pretty.  The impression was made in a foam-like material and Dekar’s information was filled in on the other side.  The box ties shut with a ribbon.

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I remember sitting in the hospital the day after Dekar was born.  I stared out the window while eating my breakfast. 

I wondered why Dekar had to die when so many babies were not wanted.  Why Dekar, when so many were not loved and cared for by their mothers.  As soon as the question entered my mind, a gentle voice said, “That is why YOU were chosen to be Dekar’s mother.  Because despite his diagnosis, I knew you would still give him a chance at life.”  Then I thought of what could have happened with Dekar, specifically,  if he had been one of those other women’s child—-and it stabbed me in the heart but then I was flooded with peace.  Even though I felt the loss deeply, that gentle voice answered the question of “Why my baby?”  Because Dekar was meant specifically for me.

Dekar was not just any baby–he was MY baby.  God gave him to me, knowing I would be the best mother I could for him.  No matter the outcome he would still be my son.  Would I have really wanted him to be somebody else’s–knowing that they would abuse, abort, or not care for  him?  No. 

I would never make light of the questions people ask:  “Why me, why my baby….why, when I wanted a baby so bad?”  If it were up to me NO babies would die or be hurt in any way.  But I’m not in control of any of that.   My recent miscarriage made no sense to me, and still doesn’t.  The first thing I did was throw up my questions to God: What was He thinking?  How could He allow this to happen?  Why?   I lost Dekar, why did you allow me to lose another one?

Even though I am not carrying that baby any longer and will never hold that baby in my arms, it doesn’t change that fact that I am still that baby’s mother.  I still held a life inside of me that was precious.   I still mothered that baby the best I knew how, just as I did with Dekar.  

I can be sad about the outcome, but I can also thank God He gave me a baby to love–a baby meant for me, and nobody else.

From April 27th, 2009

Today Dekar would have been 10 months old.  On my FaceBook account I simply typed out “Ice Cream”.  I knew what it meant, and it didn’t matter if anybody else did.

This time “Dekar Day” is hitting me a bit harder because I am also dealing with the loss of another baby. 

On April 8 I went into my first prenatal appt., very excited about the first ultrasound that I would be having with my new pregnancy. The due date would have been in mid-November.  As soon as Dr. Jeakle started the ultrasound, I knew something was not right.  He was humming—when my husband hums, I know that something is up—and the volume on the machine was not turned up so that I could hear the heartbeat.  I knew it was taking too long for him to find what he was looking for.  Long story short, my doctor saw the little baby just fine, but the heartbeat was not detected.   I was numb.  It was not what I expected at all.  Add to the frustration is the fact that the little baby measured perfectly—according to my date I would have been just over eight weeks along, and that’s how big the baby measured.  The baby’s heart may have stopped beating seconds before the ultrasound.

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I left that appt. not understanding anything any more.  I just looked up at God and threw Him some question marks. 

I had hoped to let the miscarriage happen naturally, but found the waiting to be harder than I anticipated.  It reminded me of the time I was waiting on Dekar to be born.  Even though I knew Dekar may not be born live, I had that tinge of hope to hang onto.  With this—-there was nothing.  I was just waiting for the inevitable.  Two weeks later, after no signs of miscarrying,  I requested another u/s and went home with the confirmed bad news–but still desiring to miscarry naturally.

I couldn’t take it.  Once I got home everything hit me hard again.  I called the doctor’s office and left the message that I am emotionally spent and didn’t know what I wanted.  The doctor called me back and was again very compassionate–he didn’t push me into anything and he let me make my own decisions through the whole process.  We scheduled a d&c, which was performed on Friday, April 24th.  I was not happy about it, but I felt it was better for me and my family to get it done.

Today I received a call from the hospital to see how I was feeling after the surgery on Friday.  My pain is keeping me up at night, so I did a follow-up directly with Amy, Dr. Jeakle’s nurse.   Pain meds would be ordered, and after talking “business” I asked if she had a Girl Scout, since I wanted to buy some cookies and didn’t know any who were taking orders.  Found out that ordering was over, but Dr. Jeakle’s wife orders extra.  Good.  At least I can get some Thin Mints and Samoas.

While in town to pick up the pain meds and ice cream treats for Dekar Day, I got a call on my cell–it was Amy, telling me the cookies were in.  That was quick, and such perfect timing!  I asked how much they would be, and she said, “Nothing.  I think you could use some G.S. cookies so we threw a bag together for you.” 

Indeed, she and some others at the office (I am not sure who) put together a bag for me—four boxes of Girl Scout cookies, other candy treats, and a candle.  It was a random act of kindness that meant more to me than they will ever understand.   They went beyond their “work” mode and treated me with a measure of warmth and friendship that I won’t forget.  It was just. so. nice. 

After I got home I plopped in front of the computer with a box of cookies…..(and those who know me know I am not sappy)—-I got a lump in my throat when I saw a bunch of my friends let me know that they had eaten ice cream, or planned on it,  in memory of Dekar.  Through facebook and email, I was told they remembered…..

Tonight as I eat my ice-cream with my husband, I expect it to have a whole different feel to it.  I will not only be mourning the loss of Dekar but also mourning the loss of a baby I never met, but desperately wanted to.   Maybe they are eating ice-cream together in heaven?…..

Before I go to bed I’ll look at my children and thank God for the gifts that He has given me.    And I will be sending up a special thank you to Him for putting people in my life who will show a random act of kindness and for all of the others that remind me they care—especially at a time when I needed it the most.

that some people have too hard a time facing the fact that babies die.  I guess they don’t want to look into the eyes of a mother who lost a baby too soon, because then they may have to actually face that reality.  I guess it’s much easier to not say anything, look away, or to say a quick hello and move on. 

I guess it’s easier to believe that these types of things happen to people we don’t know–and they would never have to deal with this painful reality face to face.  It’s much more pleasant to think that it could never happen with thier own pregnancy or their own baby.  Or their daughter, or sister.  It only happens to the other people.  It happens to the other people they don’t know and people who don’t live by them…..

Then once the “other person” IS somebody they know, or somebody who lives by them I guess they don’t know how to handle it. 

It’s really understandable.  I’ve never been in this position before either. 

Before last spring, I’d never even thought I would  hear such devastating news—that the child I was carrying would not live long, if he was born live at all.  I handled it the only way I knew how:  I cried.  and cried.  and cried. 

Before that day I’ve never had to find the strength to just make it through each day of my pregnancy, not knowing if that kick I just felt would be the last one I’d ever feel from my son. 

I’ve never had to pray for a miracle and plan for a funeral.  I never had to wonder if my baby would be born live or still.  I never had to talk to a funeral director or call a photographer to get “final” and only pictures of my child. 

I used to be the one who always felt blessed, knew that all would go well and that I’d have many sleepless nights ahead of me because of the diapers and crying……but now I would have sleepless nights coming to grips with the fact that Dekar was not with me and never would be again on this earth.  My sleepless nights were only filled with silence or the sounds of my own crying.

There was no way to practice for the position I was all of a sudden placed in.   There was no rule book to follow and no way to know how I would make it through each day.  I didn’t know what I was suppose to do or how I was to act.  So, I wrapped myself fully into the roll of being Dekar’s mother. 

After all, that part didn’t change.  I was still Dekar’s mother.

I was celebrating each movement, yet already grieving the loss that was already in the depth of my heart.

While the other pregnant ladies anticipated their baby showers and decorated their nursery, I was deciding between cremation or burial and picking out what would be Dekar’s first and final outfit.  

Instead of arranging our house for another little person, I was praying that I’d be able to bring home Dekar, even for only one day.

I’ve never had a baby die in my arms before Dekar.  I’ve never had to watch my children and husband cry for the little life that was lost before our eyes. 

And I’ve never had to face people who say nothing about the loss of my son.  

And this is one thing that I don’t know what to do with. 

I have no idea. 

All I know that I can do is bless God that these people have never had to do the things that I did last year.  I hope they never will.

Click on the picture to see Dekar's memorial.
Click on the picture to see Dekar’s memorial.

to-write-their-names-in-the-sand-bu

 

 

 

When I was pregnant I was active on a pregnancy board with other ladies due the same time as me.  I visit the board occassionally and keep up with some of them who have blogs.  

I see the pictures of their babies and how cute they are.   It doesn’t bother me to see the pictures, because I am truly happy that they have healthy little babies to hold and love.  I’m happy they got to take their babies home.  But at times it hits me that the pictures of Dekar that I have are the ONLY ones I will EVER have.  He will forever be that little infant…..it’s like part of my life is fragmented off because as my other children grow older, Dekar will always remain an infant.  It’s just weird.

Dekar would eight months, and I love that age.  They really start taking on more of their own attitude and personality.  They smile a lot.  They are a bit easier to care for because they can sit well on their own and entertain themselves.

A few days ago I was sitting on the couch with my son, Mel (4 yo).  I told him that we’d get to have ice cream soon for Dekar Day, and that Dekar would have been eight months old. 

“If Dekar were alive he would be driving you a little crazy, Mel,  because he’d be getting into all of  your toys.” 

“Yeah,”  said Mel, “But he could play with them!” 

“Yes, he could.  And I bet he’d try to chew on you— and drool, too!”  Mel’s eyes brightened up and he giggled after he thought about that for a while. 

“But he could play with my toys, and that would be nice!” 

Yes, it would.  But, Dekar isn’t here to play with toys, chew on his brother, or drool on his clothes.  I do notice that Mel’s eyes brighten up when we talk about Dekar.  Although I am not sure any of my kids understand the importance of Dekar Day, I do hope that it becomes so ingrained in them that even when they are off to college, get married, and have kids of their own, they will pause on the 27th of each month and eat some ice-cream in honor of their brother who is forever an infant.

Rachel holding Dekar with Mel looking on.

Rachel holding Dekar with Mel looking on.

I never heard this song before today. It fits in so perfectly with the memorial ornament I purchased.
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WITH HOPE–STEVEN CURTIS CHAPMAN

This is not at all how
We thought it was supposed to be
We had so many plans for you
We had so many dreams
And now you’ve gone away
And left us with the memories of your smile
And nothing we can say
And nothing we can do
Can take away the pain
The pain of losing you, but …

We can cry with hope
We can say goodbye with hope
‘Cause we know our goodbye is not the end, oh no
And we can grieve with hope
‘Cause we believe with hope
(There’s a place by God’s grace)
There’s a place where we’ll see your face again
We’ll see your face again

And never have I known
Anything so hard to understand
And never have I questioned more
The wisdom of God’s plan
But through the cloud of tears
I see the Father’s smile and say “Well done”
And I imagine you
Where you wanted most to be
Seeing all your dreams come true
‘Cause now you’re home
And now you’re free, and …

We can cry with hope
We can say goodbye with hope
‘Cause we know our goodbye is not the end, oh no
And we can grieve with hope
‘Cause we believe with hope
(There’s a place by God’s grace)
There’s a place where we’ll see your face again
We’ll see your face again

We have this hope as an anchor
‘Cause we believe that everything
God promised us is true, so …

So we can cry with hope
And say goodbye with hope

We wait with hope
And we ache with hope
We hold on with hope
We let go with hope

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