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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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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 

This is so good.

It is about understanding the valley we or others are going through–it validates our sorrow and pain. Look at the man in the booth—I know I can relate to that look and can “feel” that pain he is carrying.

This is also educational for those who may not understand how to respond to the pain we are feeling–how some responses are helpful and others are not.

THE MOURNING BOOTH–The Skit Guys

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.

001-smaller

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.

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.

For quite a while I have been looking for a Christmas ornament that really reminded me of Dekar.  Today, I found it.  I’ve been having some rough days and finding an ornament in memory of Dekar helped to lighten my mood and make my soul smile.  It isn’t really an “ornament”, but that’s okay. 

Here it is:

hope1

Although I miss Dekar like crazy I have the promise that I will see him again; I have HOPE because of Christ.  A little boy, joyfully displaying a HOPE balloon caught my attention, and I knew it was meant for me. 

“Hope is symbolized in Christian iconography by an anchor.  And what does an anchor do?  It keeps the ship on course when wind and waves rage against it.  But the anchor of hope is sunk in heaven, not on earth.”

~~Gregory Floyd,  A Grief Unveiled

(The above figurine can be found hereWillow Tree® by Susan Lordi –“Hope”, stock #26163)

I am so blessed that I got to see Dekar alive,  even though it was only for a short while.   I loved being able to hold him, kiss, smell, touch and talk to him.  From Dekar’s first struggling breaths to his last, he gave his all to us.  We were able to lavish him with love, and every moment was cherished.  

I’ve shared a few pictures and the email I sent after his birth and the events that followed.  I had written much of that while in the hospital the day after Dekar died.  The quietness in the hospital room was so loud that is was screaming at me.  It stinks to recover from a c-section, but at least you get to oogle at a beautiful baby.  That day, June 28th,  I woke up alone and ate breakfast with no baby to stare at in a bassinet.  Cortney was home with the other kids, so the silence was deafening. 

I am constantly aware of the fact that my baby isn’t here with me. I came home with empty arms and the burden of those empty arms is a heavy one. 

Nobody can feel the load I carry any more than they can see the wind blow.  But the pain I feel and the emptiness that has been left in my heart is real and I am always aware of it.  I am also aware that I am not the person I once was, even though it may seem so from the outside.

To everybody else, it seems that life goes on.  That is the hardest part for me.  My arms are empty, but my hands are busy.  Very busy.  There are still the regular, daily needs that have to be attended to.  Since my hands are busy it appears that life is continuing on as normal.  But it’s not.

When Dekar took his last breath, he also took part of me with him.  A person simply isn’t the same after they’ve held a lifetime in their arms.  Life may go on, but it will never be the same.

Click on banner to visit the Official Site of Pregnancy and Infant Loss Rememberance Day

It’s hard to know what to write for an obituary when a whole life is encompassed in just over eight hours.  The funeral director didn’t handle many baby/children’s funerals (thank goodness) and he didn’t have a template to work with that was suitable for an infant death.

I did some research on the internet, thinking it would be quite easy to find a guideline for an infant/child obituary.  I was saddened that there was little to no help.  We didn’t plan to have a service, since we felt that we had our own private time right at the hospital.  We decided to have him cremated because we don’t have roots in this town and didn’t want to end up leaving him should we ever move.  But I still wanted to honor Dekar and the life he gave us, even though it was short.  I wrote up an obituary that said everything I felt was appropriate.  The funeral director fixed it a bit, and then it was sent off to the newspaper, both online and print.  I didn’t realize there was a price associated with submitting an obituary to the newspaper.  We decided to just post it in the local paper, who also posted it online.  This made it convenient to share with the many family members and friends who are out of town.

Below is Dekar’s obituary.  For our situation it covered the basics.  Some parents add a special note to their baby or a poem.  Some share a picture.  Some may want to include the reason for death.  (I am not sure why I didn’t include that—if I could do it over, I would add that he had Trisomy 18 and hypoplastic left heart syndrome.)

Dekar Ezri Schmidt passed peacefully in the arms of family on June 27, 2008.  He was born at 10:46 a.m. and met the eyes of Jesus at 7:10 p.m. the same day.

Dekar was the son of Cortney and Marge Schmidt of Atwood (Ellsworth).  He is survived by eight siblings, Hali, Aaron, Solomon, Eli, Rachel, Jadon, Melchizedek, and Isaiah, all at home.

His paternal grandparents are Jerry and Judy Schmidt of Tomahawk, Wisc.; and maternal grandmother, Laura Pehoski of Stevens Point, Wisc.

Dekar gave us a lifetime of love during his short time on earth.

The Now I Lay Me Down To Sleep Foundation provided a volunteer photographer to record his short life with us.  In lieu of flowers we would be pleased to have you support their mission to help other grieving parents through their remembrance photography at: The Now I Lay Me Down to Sleep Foundation, 7800 S Elati St. #111, Littleton, CO 80120, or:  http://nowilaymedowntosleep.org/pageDisplay.php?page=42. Winchester Funeral Home in Charlevoix is handling the arrangements.

If you are in a situation that you are using the above as a guideline, I am very sorry and my heart goes out to you.  I pray that this will serve to take away a little bit of added burden associated with your loss. 

Since there is a need, I am working on a separate page of sample obituaries which other parents have graciously offered to share.  I am updating it as often as a new obituary or memorial is offered. 

 

After the diagnosis of Trisomy 18 and hypoplastic left heart, my head swirled.  I kept praying that God would heal Dekar.  But having experienced a child that went through cancer**, I knew full well that God sometimes has other plans and allows us to go through very difficult situations.  So, as I prayed for Dekar’s complete healing, I also prayed for guidance and direction to plan for the worst case scenario.   I started scribbling notes on what I should look into.  Below are items I researched and discussed, along with things I wish I had done or questions I wish I had asked.  I am also linking to the Now I Lay Me Down To Sleep forum where parents weigh in on this matter in more depth.

These are items that were on my mind at the time (or things I wished I would have done.)  The Birth Plan is the outcome of researching most of the items below. (This page will be updated as time goes on and my memory is refreshed.) Last updated June 18, 2009.

MY CARE:

  • What would be best for me?  Natural delivery or c-section?
  • If I chose c-section, what pain medication would allow me to be as alert as possible after Dekar’s arrival?  (Discuss with ob nurse and doctor.)  What pain medication will allow me to be the most mobile?
  • If I go into labor naturally, do I want pain medication?

DEKAR’S CARE:

  • What will give me the best chance of seeing Dekar alive–natural delivery or c-section?
  • If Dekar is able to eat, will he be able to breastfeed?  If not, what other options are available?  Will a nurse be able to teach me to tube feed him?  What is the hospital equipped for?
  • Can he have surgery to fix his heart? What outcome could I expect?

IF HE IS ABLE TO COME HOME:

  • Contact local hospice and talk to them.  What do I need to know?

IF DEKAR DIES:

  • How long can I hold him after his death? Does the hospital have a policy for deciding this time frame?
  • Does the funeral home have a time frame for picking him up?
  • When do I get his clothes returned from funeral home?  Will they be washed when they are returned? (We chose cremation, so his clothes were returned to us.  I suggest removing the clothes and reclothing at the hospital directly before sending the baby to funeral home.  Dekar’s clothes were returned smelling of the funeral home, and that made me sad.)
  • Cremation or burial?
  • What funeral home?  (Don’t assume the local one in town will be the best to serve your needs.  Meet with the funeral director personally.  Choose your funeral home as carefully as you would pick your doctor.)
  • Will you be able to view your child again if you choose cremation?  In other words, once the funeral home has him, is that the last time you be able to hold his earthly body?  Some funeral homes allow another viewing before the child is taken for the cremation, some don’t. 
  • If I choose cremation, how do we receive the ashes of our child? 

OTHER STUFF:

  • Can we camcorder the delivery in the operating room (c-section)? 
  • Pictures—have a couple cameras to use, along with plenty of batteries.  Buy extra disposables, just in case.
  • Is there a Now I Lay Me Down To Sleep photographer available?
  • Do I need to supply the material for the casting of his feet and hands?  (Kits available at Michael’s.  Buy a few since they don’t always turn out perfectly.  I did one of each hand and feet.)
  • What does hospital provide as far as making memories?
  • Finalize a birth plan.  Make several copies.  Have doctor read it at each visit as it is updated.
  • Make sure staff  knows how to spell and pronounce Dekar’s name.
  • Take a special blanket to hold Dekar in.

Even now, I still feel I covered everything as well as I could–however, I admit I have some regrets.  I don’t dwell on them.  I don’t beat myself up for them.  If they pop into my mind, I think about them, deal with the emotions that are tagged to them, and thank God that I really did do as well as I could at the time, given the circumstance.  If I let these regrets overtake me I would be miserable and bitterness would rule. I have to give myself grace.  Besides the hard diagnosis, I had a c-section and on pain control.  My thought process was not as sharp as it is on a “normal” day.  I was tired and trying to make the most of the whole situation.  Sigh.  All that said, here are my…..

THINGS I WISH I COULD GO BACK AND CHANGE:

  • Have an extra outfit to change Dekar into before he was taken off to funeral home.  When I got Dekar’s clothes back they didn’t smell like him any more–they had taken on the funeral home smell.  That made me sad.
  • I wish I had spent the whole night holding Dekar after his death–allowing the nurse to cool the baby at intervals as needed. 
  • I wish I had changed at least one of his diapers.
  • Clarify what “standard suctioning” is so that I knew we were on the same page with that instead of assuming we were.
  • Not allow the dr. to go do an exam on Dekar.  Looking back, there was simply no need for it. 
  • I wish I had taken off the hat that the nurse put on him and replaced it with the one I brought right away. 
  • I wish I had been prepared to know how Dekar’s ashes would be delivered.  Because we didn’t purchase an urn right away,  we received his remains in a thick plastic bag which was in a cardboard box.  I just wish I had known that beforehand.  I would have been more proactive about getting a permanent “resting place” for Dekar.

**My oldest son is almost sixteen years old and a cancer survivor.  He had hepatoblastoma with metastasis to the lungs.

Shortly after coming home from the hospital I told the family that the 27th of every month will be “Ice Cream for Dekar” day.   This is a way that we can keep Dekar’s memory alive, and it’s a fun thing to do.  I would get hassled by my family that I would go out for ice cream so much while pregnant—but I loved feeling Dekar kick and ice cream seemed to do it for him!  I don’t know if it was the sugar or the coolness, but he reacted. Since we had gotten his diagnosis of Trisomy 18 and hypoplastic left heart, those kicks became even more precious to me.   I looked forward to each outing and the movements that would soon follow.

So, July 27th we all went out for our first “Dekar Day”.  My oldest son said, while licking ice cream, “I’m sure glad that Dekar didn’t like meatloaf.  I mean, what would be the fun of having meatloaf every month.”  🙂

Eating the ice cream brings back fond memories for me.  It also conveys to the kids who may not otherwise remember Dekar that their little brother is worth remembering and celebrating.

_________________

February 27, 2009

Today Dekar would have been eight months old. 

Sigh.

—————————

I have rootbeer and ice-cream ready to go for tomorrow.  (March 26, 2009)

_________________

On Dekar’s first birthday we all had ice cream cones covered with sprinkles.  What was so funny to me was hearing from several  friends that on Dekar’s birthday they ALSO had ice cream with sprinkles!   I’ll never look at ice-cream with sprinkles the same!

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