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October 15th is Pregnancy and Infant Loss Awareness Day.

Today we remember the babies who were born asleep,

the babies whom we carried but never met,

the babies we have held but could not take home,

and the babies who made it home, but didn’t stay.

I will have a whole new family to join up in heaven!–Dekar and six (known) miscarried babies.

A candle will be lit at 7 pm in honor of them and all babies gone too soon.

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Some people who stumble across this site may wonder “why”?  Why have a site dedicated to a lost baby?  Well, for me, I started it as an easy way to share Dekar’s Now I Lay Me Down To Sleep video.  It also was an easy way to share his story without having to send it out individually.  I didn’t have the energy for that.  Then I just kept adding posts here and there.  Some I have removed, but most I have kept posted.

When I look back and read some of the stuff I posted, honestly…..I cringe.  I don’t really like what I wrote, or the tone I wrote it, or the way I conveyed my feelings.  But I keep them there because it is all real. I could go back and edit things, but I wrote what I wrote and I stand by the words I wrote, even if they aren’t pretty or eloquent. If I changed anything now, I would take away the reality of what I felt at the time.  Grief is a weird thing. Some days I could feel fine and felt “over” the loss of Dekar, and then the next day I could feel so sad that it felt like a truck hit me.  So my up/down, nice/not-so-nice posts are all real

Here we are, three years and five months later.  And here is more of my reality:

  • We still have a Dekar Day every month.  We break out the ice cream or some other too-sweet treat and remember Dekar’s short, but full life.  My one son never made the connection that we did this on the 27th because Dekar was born on the 27th….but now he knows. 🙂 Today is that day!–We will likely go to a store and pick out whatever flavor strikes our fancy.  Sprinkles have become a frequent occurrence of the memory celebration.
  • I have a box of Dekar’s photos that are still not in albums.  I requested that they all be printed in order–from birth to the last moments–so that the albums would show the flow of his life.  But I can’t do it.  I haven’t even opened the box to look at the photos.  Why not? I don’t know.  I just can’t do it.  For my birthday I requested some photo albums specifically for this purpose–thinking that would help me make the next move.  Well, my birthday was in October, and the albums and box of photos still sit.  Someday.
  • Dekar’s ashes are still in the box that the funeral director gave me.  I thought that once I got the perfect urn that it would not be a hard thing to have the ashes placed in the urn.  Wrong.  The urn sits in my memory cabinet, and the ashes sit in the cardboard box in my closet.  It’s another thing that will happen Someday.

I keep this site up now not so much to share Dekar’ story or video, but because many people search for baby obituaries.  I know how helpful that is for them–it was in the reality of what I was going through that I saw the need to have a reference site of baby obituaries. 

I also keep this site up because it was, and still is, my reality.  I also know there are others going through their own reality that may be similar to mine:  I was pregnant, Dekar was given a diagnosis of “incompatible with life”, I hit the grieving stage from the moment of diagnosis,  I carried to term, I wondered if Dekar would open his eyes and meet his family, I said hello, I saw him smile,  I said good-bye, I wrote an obituary, I gained too much weight while pregnant, I encountered kindness, sincerity, coldness and indifference.  Put a million other realities in there, and that is my story.

In all of this I did the best I could.  Just like with this blog–it has simply been my reality.  I am not a “professional” blogger and don’t have any desire to be.  But I do want people who have had to deal with the loss of a baby, directly or indirectly, have a place where they can safely say, “I can relate to that” or “that helps me understand why my sister is acting a bit off, even a year after losing her baby”  or “these obituaries are really helpful–I have no idea how to write a baby obituary….” 

Maybe you can’t put your photos in albums, or your baby’s ashes in the urn.  Or maybe you are just the opposite and look at the photos every day and light a candle by the urn every morning.  Our realities are the same–just dealt with in a different way. There is no right or wrong.  All I know is that I would gladly share an ice cream with you, listen to your story, and love having the opportunity to share mine.

I was so tired.  After hearing Dekar’s diagnosis of Trisomy 18 and hypoplastic left heart syndrome my life became filled with so much uncertainty and the grieving began.  There were no promises I would ever see him with his eyes open.  So after the c-section and meeting my little guy I didn’t want to sleep at all. I wanted to take in every single moment.  After only a couple of hours I was exhausted, but happy:

I am soaking in every moment that Dekar is alive. I watched the kids hold him and kiss him and relished every moment. This picture reminds me of how hard it was to keep my eyes open and the feeling of pure exhaustion.

And I know my husband felt the same:

Here is my husband “resting while awake”. Isaiah kept him on his toes.

Very soon after those pictures were taken–the ones showing how tired we were–another picture was taken.  I was holding Dekar and this happened:

Dekar smiled!

 

I remember that moment. He looked me straight in the eyes and smiled–and it was such a real smile!   It literally took my by surprise and pierced my soul with joy!
 
It wasn’t long after the smile that it became obvious he was leaving us.  His eyes started glossing over and his heart rate continuously decreased.  We all held him one more time and said good-bye. 
 

Later on I realized even more what a gift his smile was–and how much he said to me in that fleeting moment!  “I love you, Mom, and I’m so glad I got to see your face and feel your kisses.  I love Daddy and all my brothers and sisters, too.  It was so fun being held and loved by everybody.  But I’m tired and I can’t do this much longer. I have to go soon. I know you will be sad, but I’ll see you again…. Mom–Thank you for giving me life. It has been a good one. I know I am loved and always will be.  So are you.” 
 
He said it all in that one smile. And what a blessing it was that Hali was right there and captured the moment.
 
 

It’s hard to know what to say to somebody when their precious baby dies.  While we received many lovely, heartfelt sympathy cards, this one has always stood out to me.  The lady hesitated to give it to me because she was worried it was “too late”.  (It is never too late to recognize somebody’s loss, whether it be in word or deed.)  I was so blessed when I read this even though it was given to us a couple months after Dekar’s departure. 

9-09-08

Dear Friends,

Though it has been a while now, there is still nothing I can say to ease your loss of little brother and son, Dekar.  Our prayer is that time will make the wound less raw and the pain less intense.  The time you spent with Dekar was beautifully spent in such a meaningful way that it touched our hearts.  The sharing of your story and of that time gave even more meaning to Dekar’s life as others use it to reinforce their strength to face similar conditions.  Our prayer, too, is that Dekar’s absence will not be sorely felt and that one bright star will shine over each of you to remind you that one day the wound will be made whole again when your continued faith in God, our Loving Father, will bring us all together again with our missing loved ones.  Then, without pain or sorrow, we can love, and be with one another for eternity. 

With friendship and love for your family,

JSW

I emailed this when we had our final diagnosis about Dekar.  There was much uncertainty for about a month–not knowing what was going on with our baby when all had seemed to be going fine.  I can vividly remember the raw emotions that flowed when the doctor called with the final diagnosis.

“Our baby boy has been diagnosed with a chromosomal abnormality called Trisomy 18. It is caused by the presence of three — instead of two — copies of chromosome 18 in a fetus or infant’s cells.
What this means is that the prognosis for the baby’s survival is not good. Along with (and/or because of) Trisomy 18 he has a heart that is not formed correctly (most likely only two chambers, possibly three) along with a brain and kidneys that have not formed correctly. The dr. says there is a small possibility the baby could be born live but if he does, he would not likely live long. There is also a very good chance that he will die before birth. Thankfully, he is not in any pain now.
We have named him Dekar (pronounced Decker)–a name we picked out a while back. It means “pierce”. He certainly has pierced our lives–with unexpected pain, but mostly with an overflow of love for him. His tentative middle name is Ezri, which means “helped of God”—and God is truly his only hope now.
Please pray for peace for all of us. There is still much uncertainty in the coming days and it is all in God’s hands.
Marge and the rest of the Schmidts”

Side note:  We have never found out the gender of any of our other babies before birth. Dekar was the only one we requested to know the gender since we felt it was important to have a definite name for him beforehand.  We did use the name Ezri–it was very fitting, and still is.  We know God was with us through the whole thing, and even prepared the way before we even knew anything was wrong.  God gave the OB/GYN  “eyes to see” and the wisdom to check into something that seemed like a small thing—the baby seemed to be growing slower than my other babies…That actually is a whole ‘nother story in itself. 

After hearing the news of the final diagnosis we met with doctors several more times to find out exactly what was going on with Dekar and started formulating a birth/death plan–otherwise known as “Praying for a miracle, planning for a funeral”!

 

I didn’t get out of my pajamas for several days after getting Dekar’s diagnosis–I am thankful that God doesn’t care how I look or smell when I cry out to Him.

I am thankful that God understands the depth of the heart cry “Oh God, help me.”  That was all I could pray for a while.

I am thankful that God planned everything so perfectly the day that Dekar was born.  When I find myself worrying about something I can rest in the fact that God is in control and that God cares.  I have the very real experience of Dekar’s eight hours on earth.  God took care of details that I did not think of and certainly couldn’t have planned.  If God did that for me then, He does it for me now.  It helps calm me in times of stress.

I am thankful that I spoke to Dekar.  When I looked in his face and saw his poor color I was silent–he had the face of death.  All I could think was “This isn’t right!  This isn’t how it is supposed to be!  Dekar is supposed to be alive to meet his brothers and sisters!………..”  and while I was fretting, I remembering hearing a gentle voice say, “Speak to him.  Dekar knows your voice.”  And so I did.  I said, “Hey, Dekar.”  I didn’t know what to say–but as I kept talking he moved his head and attempted to open his eyes, looking for the voice that he heard for months while growing inside of me. Then he attempted to cry.  The nurse told me afterwards that was a miracle–usually babies in Dekar’s situation continue to deteriorate more and need medical intervention to respond.  But my voice, and my husband’s voice, was what Dekar needed.  I am thankful I didnt’ give into my grief, listened to the beckoning, and spoke to him. 

This morning I ran across a highlighted verse in my bible — I had  Dekar’s name scribbled beside it:

 Isaiah 57:1-2

 The righteous perish,
   and no one ponders it in his heart;
devout men are taken away,
   and no one understands
that the righteous are taken away
   to be spared from evil. 
Those who walk uprightly
   enter into peace; 
   they find rest as they lie in death.

I am thankful that although I don’t remember highlighting that verse, that God used it as a reminder for me today that He cares about Dekar and that he has been spared from evil and finds rest as he lies in death.  

I am thankful that although Dekar is not here with me, he is in total peace and at rest in Heaven. 

I am thankful for the experience.  I am thankful there were people to support me and help guide me with decision-making.  I am thankful that I can now extend that same kindness to others.

 I am thankful I have a new perspective and a new hope. 

Happy Thanksgiving, Dekar.  Tomorrow I’ll have some ice cream, remember the beauty of your short life, and be thankful for God’s continued faithfulness.

 

It took almost two years, but I finally found the perfect urn for Dekar.  This was purchased through Perfect Memorials

Front with engraved writing.

Top, where a large candle can be placed

Inside where the cremains (or other momentos) can go. Top can be sealed permanently, if desired.

back

When given the diagnosis of Trisomy 18, we were told Dekar only had a 50/50 chance of making it to a live birth, and few babies who survive make it to their first year.  

‘Miracle baby’ celebrates first year of beating odds

—A happy birthday for Joey—Bruce and Lisa Pagac with their “miracle baby,” daughter Joey. (Staff photo/MATT AIKEN)
By Matt Aiken
Published:
Wednesday, June 23, 2010 10:40 AM EDT (used with permission)
Joey Pagac’s first birthday is much more than a milestone.

To her parents, Bruce and Lisa, it’s a miracle.

“I brought her home from the hospital expecting that I’d only have maybe a few more days with her,” says Lisa. “And here we are.”

Where they are is the maternity ward of Chestatee Regional Hospital, where little Joey is wearing a tiny birthday hat as she’s passed back and forth between adoring nurses and cooing doctors.

It was a little more than a year ago that Joey beat the odds by emerging into the world despite her diagnosis of Trisomy 18.

“Trisomy 18 children generally have a whole host of issues,” said Lisa. These issues can range from holes in the heart to non-functional kidneys. The disease is so severe that approximately 95 percent of babies that are diagnosed with it don’t make it through delivery. Others rarely live more than a few hours after birth.

Naturally, when the young Murrayville mother found out her child had the vicious disease, she was crushed.

After trying for eight years to conceive, Lisa and Bruce had turned to in vitro fertilization and watched Joey develop from an egg. So when the results of an early test came back, Lisa felt as though she already had a daughter.

“I had seen her look like an egg, then I saw her look like a frog, and then I saw her look like a porpoise,” says Lisa. “I mean, I watched her stages of development, and I was already attached. I couldn’t bear the thought of losing her. And I wasn’t going to make the decision to end her life. I would leave it up to God. And I’m glad that I did.”

Chestatee nurse Ellen Wren says the gutsy move of Lisa and Bruce is to be admired.

“I think what was so amazing was she was given a choice,” said Wren.

Joey’s pediatrician Dr. Stephanie Corn agrees.

“Their plan was ‘I want to hold this baby for 30 seconds, for 60 seconds, maybe a day, maybe two days,’” she says. “They lived in the moment.”

Joey arrived two weeks late. And the delivery process was brutal, says Lisa. She credits Dr. Robert Brown for getting her child through it.

“We almost lost her twice,” she says. “… But she came out crying. She didn’t require anything special.”

Normally Trisomy 18 babies need breathing and feeding tubes to live. Joey requires nothing like this. Instead she has spent the past year growing and developing with very few complications.

And, in turn, Lisa, Bruce and Joey have grown into a family.

“I’m just happy,” says Bruce.

Joey is too, adds Lisa.

“She’s really a very happy baby,” she says. “I’m so lucky. She’s so good natured.”

After returning home from the hospital, Lisa says she learned that she wasn’t alone in her plight when she met up with other parents of Trisomy 18 children on Facebook.

“After connecting with a bunch of people I found out, ‘Gosh, I’m not the only one.’ There’s so many other people out there,” she says.

In turn, Lisa says she hopes she can provide comfort to any parents-to-be who find themselves in a similar situation.

“It’s an individual decision, and I would never criticize somebody over choosing the opposite of what I chose,” she says. “But I would hate for someone to choose that path, thinking there was no hope.”

As she says this, proof of this hope is still wearing a small pink birthday hat and making the rounds among a beaming hospital staff.

“She’s a year old,” says a smiling Lisa. “A year and a day. And tomorrow will be a year and two days.”

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Charlize lived for 58 beautiful days!

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Faces of Trisomy  are portraits by Jude Wolpert taken at SOFT conference in Roanoke, Virginia July 2009. The purpose of awareness is to encourage others to see our children as just what they are, kids and young adults, and not as their diagnosis. Receiving a diagnosis of Trisomy is hard enough for any parent. Today with medical advances, early intervention, therapies and inclusion in education we can make others aware of the possibilities for our children given the chance.

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Dekar gave us a lifetime of love–he lived for just over eight hours

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Darcy Anne lived for 15 days!

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You can find other Trisomy 18 babies on YouTube.

Do you have a Trisomy 18 story of hope to share?  Please send me your story through the contact link at the top of the page.

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?

DSC00078

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.”

DSC00211DSC00276DSC00137 

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

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