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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.

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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.
 
 

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.

 

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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