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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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A version of this poem was shared in a Now I Lay Me Down To Sleep parent newsletter.

Although this is not my writing, I am posting this and dedicating it to the mothers who have lost a child and have no living child at home to hug and hold on this Mother’s Day.

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CAN YOU BE A MOTHER WHEN YOUR CHILD IS NOT WITH YOU?

  I thought of you and closed my eyes

And prayed to God today

 I asked “What makes a mother?”

 And I know I heard him say

A mother has a baby

That we know is true

 But God can you be a mother when your baby is not with you?

Yes, you can. He replied, with confidence in his voice

 I give many women babies. When they leave is not their choice

Some I send for a lifetime

And others for the day

And some I send to feel your womb

 But there’s no need to stay

I just don’t understand this God

I want my baby to be here

He took a deep breath and cleared his throat

And then I saw the tear

I wish I could show you What your child is doing today

 If you could see your child’s smile

With all the other children and say

We go to earth to learn our lessons

Of love and life and fear

My mummy loved me oh so much

I got to come straight here

I feel so lucky to have mum

Who had so much love for me

 I learned my lessons very quickly

My mummy set me free

I miss my mummy oh so much

But I visit her everyday

When she goes to sleep

On her pillow’s where I lay

I stroke her hair and kiss her cheek

 And whisper in her ear

“Mummy don’t be sad today I’m your baby and I’m here”

So you see my dear sweet ones

Your children are okay

Your babies are born here, in my home

And this is where they’ll stay

They’ll wait for you with Me

Until your lessons through

And on the day you come home

They’ll be at the gates for you

So now you see what makes a mother

It’s the feeling in your heart

It’s the love you had so much of

Right from the very start

~author unknown~

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.
 
 
After getting Dekar’s diagnosis my husband’s co-worker/friend gave a pot of beautiful roses to us.  I started calling them Dekar’s Roses. 
 
At one time last summer there were nine beautiful blooms on one of the plants–one for each of my children!
 
Since I do not have a green thumb I transplanted the roses in three different areas, hoping at least one plant would survive.  This year only one plant is doing well. (I really do not have a green thumb!)
 
  These pictures were taken last year. 
 
 
Dekar’s Roses

 

 

The month of Dekar’s birthday has been funky for me the last two years.  If you have lost somebody special in your life you may understand.  For me this means I may be more somber and melancholy.  Other times I’ll want to keep busy and do something productive to pass the time. Some days I’ll notice I’m simply out of sorts–in a funk! 

As time has gone on I’ve recognized this as my way of working through the grief and acceptance of losing Dekar.  These things don’t catch me off guard or make me question myself as they used to.  I just take them as they come. Grief is a weird thing and definitely different for everybody.

Since this is Dekar’s birthday month I am going to post a new picture or memory of Dekar when I feel the need to help me work through the “funk”.

Day One–Dekar’s Roses

Day Two–Dekar’s Smile

All of a sudden, in the midst of a busy morning,  I got very sad. 

Our family will be leaving on a vacation and I feel like we are leaving Dekar “behind”.  

I didn’t see this coming.  

I am not sure what to do with the feelings, besides cry a little bit.   😦

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.

I was going through pictures today and thought these two were sweet–my husband and I (and one of our little guys) walking down the hallway the day after Dekar passed on.  My oldest daughter took them.

Sometimes I wonder, Dekar….Does anybody else think of you every single day, the way I think of you every single day?    

Sometimes I remember you with a smile, sometimes with a tear. Sometimes I just look at your picture and I wonder….   

What is it like to be in heaven?  Do you see me?  Do you see your brothers and sisters and your dad?  Do you have ice cream with us on “Dekar Day”?  I like to think so, but I don’t know. It’s a thing we do on Earth…  So, I just sit and wonder…I like to think that you bring out ice cream and share it with all the other babies who left their moms and dads too soon.  I say “too soon” because of me–not because of you.    I feel the void, the absence of your presence–the awareness of the life that was so short, yet impacted me so greatly.     

I really don’t expect anybody else to remember the way I do.  I am your mother, and from the moment I got the news of your diagnosis I grieved the loss of you, my son.  Is it possible to have a life selfishly centered around another person?  Because if it is, I’m guilty–my moments, seconds, minutes, hours, days and weeks became “all about you”.   I wanted every moment to count.    

I was the one planning for your arrival–knowing full well it was to say “good-bye”.   You were with me–you were the REASON for every moment of my planning, my grieving, and my tears.  You were the reason for the ice-cream that was eaten all too often….When I saw an outfit hanging at Target, I knew it was meant for you.  Even if you would only wear it once, I knew it was still meant for you.    

I had the privilege of the all-encompassing “connection”….feeling you kick and move. Even when your brothers and sisters felt you move from the outside, it still wasn’t the deep, full movements that I felt–the squirm that radiated through my whole being.   When I would feel the jabs I would wonder,  “Is this the last time I’ll feel him move?”….. I’m thankful the movements continued.  Did you know, Dekar, that I’m not a big ice-cream freak, but when I discovered that YOU seemed to enjoy it, I ate it as often as I could?   Did you know that you helped make me into a quite “full-figured” woman?  😉  It’s okay with me–every extra ounce of weight I gained because of eating too much ice-cream was worth it.  

I’m thankful that you shared a day with us.  But on days like today I wish I could see you, feel you, and kiss you.  I wish you were here to eat ice cream WITH us, instead of us having ice-cream in memory of you…   

I know God’s timing is perfect and I know you are in Heaven–in perfect peace and surrounded by only love.   I wouldn’t want to take that from you…but I do wonder what it is like and I wish I could see you there.  I think I might just have a Brownie Earthquake and think about it–Brownie Earthquakes made you kick and that made me smile….and tonight I need to remember that feeling.  So after having ice cream with the family, I will go off alone and indulge and wonder.  It’s what I need to do today.   

*******************************************************************************   

Our new pup Jazzie enjoyed her first Dekar Day ice-cream cone.

Brownie Earthquake--worth every calorie.

Later….  

I don’t usually take pictures of ice-cream, but it was worthy of being remembered–as silly as that may sound, and even I think it is  silly to take a picture of ice-cream.  I want to remember the ice-cream mostly because I remembered you so deeply that day.   Dekar, I had watched your videos and looked at your pictures as much as time allowed on what would have been your 22nd month on earth…but it wasn’t your 22nd month on earth.  It was your 22nd month in heaven.  As much as I love the fact that you are in heaven and that I will see you someday, I equally hated that you are in heaven instead of with me—I wanted to be with you NOW. The ever shifting emotions connected with grief continue to bewilder me. How can I go from smiling at your picture to breaking down in tears that don’t stop….how can I appreciate the time I spent with you and then be sad that I didn’t do “more” with the time that I did have?  How can I hate that I went through this yet would never give up the experience for anything in the world? 

My relationships have changed, my views have changed. Carrying you and losing you has forever transformed me to my very core. I am waiting for the time when I can be at total peace with this “new me”. Some days I think I am there, but then I learn of a new loss that I didn’t realize I suffered…a changed or lost relationship, a lost dream.  This was one of those days that I evaluated and reevaluated.  I looked at your face and little body and wondered what else will my eyes be opened to and my heart be transformed by? It’s like a constant waxing and waning.  Some, I think, have the notion that the death of a baby is something that will be forgotten and only remembered on occasion. They have no way of understanding that it is something that is right there all the time. 

When I ate the Brownie Earthquake that evening, I ended the day with a smile.  I remembered your life.  I thought of your little sounds and the smile you gave us right before  you passed on.  You only knew love and you only gave love.  And your life keeps on giving–I will never be the same.

The other day I spilled coffee on my laptop.   From what I can tell, the laptop is dead.  With that laptop I had journalled my pregnancy/experience with Dekar and that is where I kept all of my photos.  I never backed up these things.  I never saved the pictures of when I was pregnant with him.  Stupid.  Stupid.  Stupid.  Thank God I had my dh save the videos of Dekar’s birth and passing and my NILMDTS photographer gave me a copy of all of his photos.   If those were lost………..I don’t even want to go there. 

Please do not make my mistake.  If you stumbled upon this site because you recently lost a baby you are likely in a state of grief and not thinking as clearly as you usually do–if you are reading this, please stop now and save anything that you have on your computer that you don’t want to lose.   Photos, videos, journals, emails–anything that you don’t have backed up on an external source.  If you don’t know how to do it or it isn’t in your area of comfort, find somebody who can do it for you. 

You may be the parent, sibling, spouse, or friend of someone who has lost a baby or will lose a baby……If you are in the position to offer assistance to a person who could use some extra support in this area, please do it.   It is a big deal–believe me.   For some people this computer stuff comes as second nature.  Not for me.  I kept *thinking* of backing everything up and never did it.  Add to procrastination the lingering fog of grief and it’s a bad combination.  So many memories of all my children are possibly gone forever…..and I should have known better. 

One stupid spilled cup of coffee later and here I am……Yeah, I’m beating myself up and mad at myself—-I’m also extremely sad.  I can’t go back and change anything, but others can learn from my mistake.

😦

I’ll be contacting a professional to check my hard drive–I’m praying it can all be retrieved.

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.

 ———————————————————————————————————————————-

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.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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~~

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

“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~~

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

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.

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

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.

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

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.

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

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?

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.

DSC00274

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.

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