Blog Contents

September 17, 2009 in Carrying to term, grief, hypoplastic left heart syndrome, infant death, Making Every Moment Count, memorial item, NILMDTS, Photos, sympathy card for infant, thankful, Trisomy 18/T18, urn | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 2 comments

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 earth—what 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 Sleep—the slideshow made for us by NILMDTS.  Danielle Felton took the pictures and Christine Barrack made the slideshow. 

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

Praying for a Miracle; Planning for a funeral—how 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 NILMDTS—I 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 Arms—what others don’t see when they look at me….

A Full Life—Dekar had one!

Dekar’s Memorial Ornament, 2008 and 2009

Hope—Link 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 infant—as my other children grow, Dekar remains forever an infant

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

My Mom, A Pair of Shoes, and other poems—I 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 kindness—the title just about covers it

Bittersweet milestone

First Mother’s Day without Dekar

The babies that were meant just for me

Happy Birthday, Dekar—Dekar’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” diagnosis—the hardest part was not knowing if I could handle holding my deceased infant son. 

Smiling for Sharon—Sharon’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 Booth—not sure what to say or do for somebody who is mourning?  Watch this. 

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

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

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

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

“What’s so hard about putting photos in an album?”

April 7, 2016 in Trisomy 18/T18 | Leave a comment

I remember somebody asking that question when I told him that I still don’t have Dekar’s photos in an album.

As I was cleaning out my closet the other day I found Dekar’s medical records, some tiles that have his footprint, and a memory album that I never filled out.  I was looking specifically for his printed/inked footprints and I was getting quite frantic when I looked everywhere for them and couldn’t find them.  I looked one more time in “his” suitcase.  It is the suitcase I took to the hospital and never totally unpacked.  I already had gone through the suitcase twice and I wasn’t convinced I would find the prints, but I couldn’t think of any other place they would be. My mind kept taking me back to looking in the suitcase.  So I pulled it out and took out each item one at a time. A folder with his medical records, notes from when I got his diagnosis, lots of educational medical and grief material, a quilt, and at the bottom, his baby blanket.  The blanket that a hospital had donated and he took his final breaths in.  I had wrapped up another baby album (also not filled in) in his precious blanket—I opened the book and they were there.

 

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I remember reading that it really does not honor a person to have their things in a box. It is encouraged to make a shadow box, create a video collage, pick out just a few things that embrace who that person was, frame the pictures. Don’t just leave their stuff in a box, rarely to be opened or looked at.

Those are all great ideas.  But….did you ever have a baby die?

After I found the footprints I settled in and I looked through the folder in the suitcase that had a splattering of my pregnancy journey.  As I looked at the records and my notes I quickly replayed the history in my mind and heart. It was totally unexpected, totally overwhelming, and all consuming. It’s going on 8 years. It is around this time eight years ago that the doctor wanted an ultrasound done because I was measuring a bit small and it was best to have things checked out, just to be safe.  From that, I needed a more extensive ultrasound done because something was not quite right with the heart of my baby.  And from there, another ultrasound showing a wide range of defects and finally a Trisomy 18 and hypo-plastic left heart syndrome.

After he died I healed physically, packed away all his items and stuff from the hospital and went on with my life the best I could.  It has been eight years. Those eight years have been jam packed full of “doing the best I can” life  Four kids graduated from high school, two sons became Marines, one daughter got married and is building her own family.  For the past eight years that has always been at least one teenager going through puberty.  One son was diagnosed with Type 1 diabetes, my mother died, financial challenges, school challenges, and fill in the blanks with all the other things that fill a “doing the best I can” life.

No, I don’t have Dekar’s items nicely displayed. No, I don’t have his photos in an album. Yes I do have his blankets folded up in a suitcase instead of out where they could be hanging and enjoyed.  Yes, it did take me a couple hours to find his inked footprints….because I don’t have them nicely displayed in an album or shadowbox.

But I had a baby die.  And for the past eight years I have been doing the best I can.

“What’s so hard about putting photos in an album?”  I don’t know.  It just is.

 

 

 

 

 

Happy 6th Heavenly Birthday. Thank You for the Life You Gave Me.

June 27, 2014 in Trisomy 18/T18 | Tags: , , , , , | Leave a comment

Dear Dekar,

Today you will be in Heaven for six years. I watched the video that the photographers at Now I Lay Me Down To Sleep provided and I cried.

A couple of days ago it really struck me how I am a different person than before having you in my life. Time and experiences do change people, but being pregnant with you and holding you in my arms while you took your last breath changed me forever. It didn’t really strike me until I contemplated the current goings-on in my life.

About a month and a half ago your big brother, Jadon (who was only six when you were born!), was diagnosed with Type 1 diabetes. That means for whatever reason his pancreas decided to stop working and Dad and I need to give him insulin shots so that he can stay alive. (Ask God about the pancreas and how it works—He made it and can explain it better than I can!) Just like with you, this was nothing we did or didn’t do. Trisomy 18 just happens.  Type 1 Diabetes just happens.  

Jadon felt and looked awful when we took him to the doctor. The thing that still strikes me as odd is when the doctor told me that Jadon had diabetes I had no sense of fear.

When we knew something was wrong with your development there was a lot of waiting and wondering. First we thought you were just small in your development, then we saw something was wrong with your heart. Then at the next appointment the ultrasound tech started listing off problems with your brain, your feet, your hands, your heart, your kidneys….I don’t think she was supposed to do that….Then the doctor came in making it all real. There was some sort of chromosome abnormality and he wanted to do a test to determine what it was. End result–you could die in utero or if born alive, you would have a very short time on earth. Tears came and didn’t stop for days. The doctor was gracious to have one of the quicker tests done so that we didn’t have to wait for the total final results. And then days (which felt like years) later he called saying you have Trisomy 18 and hypo plastic left heart syndrome. The tears kept coming. The pjs didn’t get changed for days.

I remember how it tore me up when your oldest brother, Aaron, was diagnosed with hirschprungs soon after he was born. He had to stay in the hospital, I couldn’t be with him overnight, he was in pain—it was just all around awful. Then he had to have a surgery to have a colostomy. I didn’t even know what a colostomy was and all of a sudden I had to do all the care for him having one! A year later he had a surgery that had a long healing process.

Did it ever enter my mind that he would then be diagnosed with Hepatoblastoma before he turned two years old? No! I breastfed, I fed him healthy foods, I stayed home with him and Hali—he wasn’t supposed to get cancer. But he did. He also survived and is thriving.
Not only did he survive, but we all did.

And here we are now. Here I am now. I am not the same—there is no way I could be.

The common theme that runs in my mind is “death”. Aaron could have died a few times over. You did die. If things had gone wrong with Jadon, he could have died. One thing I learned when Aaron had cancer: We are all terminal. There are no promises how long we get to live. Because I knew your life would be short on earth I purposed it in my heart and mind to make your life worth living—and I didn’t even know if you would be born alive. You were loved, kissed and smothered with all kinds of affection. The hardest part for me to wrap my brain around was holding my dead child—how do I do that? I still don’t know how I managed, but I remember looking at you and thinking how you looked like royalty. Such peace and tranquility on your face.  That memory is so beautiful, when I had feared it would be one of the ugliest.

Now, in the midst of all of this, instead of dwelling on the death I think of the enriched life I can now experience. 

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The above was and still is my mantra. I never knew how strong I was until being strong was the ONLY choice I had.

Philippians 4:13 says “I can do all things through Christ who strengthens me.” And He did strengthen me—the reality is, though, I still had and have to make the choice to be strengthened by Him AND to actually DO the ALL THINGS that He is calling me to do. I didn’t know I had it in me, Dekar. I knew in my heart what I felt I had to do and wanted to do—but I didn’t know how to do it. And I did it. But honestly, it amazed me that things fell in place. God gave me a gift when He gave me you. Not just the gift of YOU, Dekar, but He has allowed me to see strength in myself that I didn’t know I had. Even when things didn’t work out as I had hoped, I had the strength and grace to be able to look beyond the disappointment and pain and have compassion and forgiveness.

And now we come back to Jadon’s diagnosis. “If I can go through a child with cancer and hold Dekar as he takes his last breath, I can do this.” That is why I didn’t experience fear. I have no doubt in my mind that I can grow with Jadon and help him to learn to manage his diabetes. I know that I have the strength for this next race because I have been trained by The Best. I know that is the ONLY choice I have because Jadon’s life depends on it. I know there will be hard times and scary times.  But I can do this.  I already have.

They say to never judge a person because you don’t know what battle they are fighting—God is the only One who has truly known the internal battles I have fought all my life. God has lifted my face to His through some of the worst experiences a mother could ever imagine. God has used these hard experiences in my life for my good and for His glory.

So today, Dekar, although I cry, I also rejoice. I rejoice in the goodness of what the Lord has given me through you. I couldn’t save your life, but in a way, I believe you helped to save mine.

Happy Heavenly Birthday, Dekar. We are having Turtle pie, French silk pie, and pecan pie with whipped cream –with sprinkles–in your memory and honor. Thank you for all you have given me. I love you and I miss you.

And whoever receives and accepts and welcomes one little child like this for My sake and in My name receives and accepts and welcomes Me. Matthew 18:5 (Amplified Bible)

A Special Memory Necklace

September 23, 2013 in infant death, Making Every Moment Count, memorial item, Trisomy 18/T18 | Tags: , , , , , , | 2 comments

For the last several months I have been wearing a very special necklace that I picked out from JewelryKeepsakes.com.

I am not much of a jewelry person, so when I do wear something it is usually pretty special to me.

This particular necklace can also hold a small amount of personal remains of a loved one.

I have seen these before and honestly wasn’t sure how I felt about it.  But now that I have one I am very glad I own it.  It is my preferred piece of jewelry–It is stylish, well made, and nobody can tell what it holds inside.  Basically, it simply looks like a very pretty piece of jewelry.  Nobody knows it holds a small part of my son’s remains unless I tell them…and I don’t offer that information.
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The necklace came with a small funnel and toothpick to help the flow of ashes into the small opening.  I had no real issue with the process of filling the necklace.  If a larger piece of remain did not fit through the funnel I was able to push it out and try a different portion of ashes. The toothpick wasn’t extremely strong, though, and it did break.  That was the only issue I had with filling the necklace with some of Dekar’s remains.

The opening on the top of the necklace is closed with a little screw.  This shut tight since I was careful to not overfill.  Originally I did not use the adhesive product that was sent with the necklace. It seemed to me the screw was secure so I did not think it needed the extra adhesive. However, after wearing the necklace almost daily for a few weeks I found myself checking the necklace regularly, making sure the pendant was still in place!  I decided to buy some strong adhesive and securing the screw permanently. Once I secured the screw with some adhesive I feel more peaceful, knowing the pendant cannot accidentally come loose.

The chain itself is something I need to have fixed.  The clasp is very difficult to attach to the other end as the opening is quite small. I have contacted the company and was assured this can be fixed/replaced.  I just haven’t done it yet due to the craziness of life lately.

I really love this necklace and am so glad to own it. Even if I didn’t have some of Dekar’s remains in the necklace I believe it would be a favorite necklace because of the special picture of a mother cradling her child’s head.
As far as the service itself from JewelryKeepsakes.com, I couldn’t be more pleased.  The shipping was prompt and the communication was excellent.
(ETA after posting:  I just want to say that when I worked on this post it looked perfect as far as spacing, formatting, etc.  But once I published it the “perfect” look disappeared!  I don’t have the time or talent to figure out how to make my son’s memory blog look excellent all the time….but hopefully those who come here look beyond all of that stuff.  I just wanted to vent a bit because I find this VERY frustrating!) 

October 15th is Pregnancy and Infant Loss Remembrance Day

October 15, 2012 in Carrying to term, grief, infant death, Making Every Moment Count, memorial item, Trisomy 18/T18 | Tags: , , , , , , , , , , | Leave a comment

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.

A Poem in Honor of Mother’s Day

May 13, 2012 in grief, infant death, Trisomy 18/T18 | Tags: , , | Leave a comment

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.

+++++++++++++++

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~

My reality…three years and five months later….November 27th, 2011

November 27, 2011 in Carrying to term, grief, infant death, Making Every Moment Count, NILMDTS, thankful, Trisomy 18/T18, urn | 12 comments

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.

6/2/2011-Day Two-Dekar’s Smile (Days of Dekar)

June 3, 2011 in Carrying to term, grief, hypoplastic left heart syndrome, infant death, Making Every Moment Count, Photos, thankful, Trisomy 18/T18 | 5 comments

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.
 
 

6/1/2011–Day One–Dekar’s Roses (Days of Dekar)

June 1, 2011 in grief, infant death, Making Every Moment Count, memorial item, Photos, Trisomy 18/T18 | 2 comments

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

 

 

Days of Dekar

June 1, 2011 in grief, infant death, Making Every Moment Count, memorial item, NILMDTS, Photos, Trisomy 18/T18 | 2 comments

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

Unexpected Sadness

April 1, 2011 in grief, infant death | 2 comments

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.   😦

Dekar’s Valentine, 2011

February 14, 2011 in infant death, Making Every Moment Count, memorial item, Trisomy 18/T18 | 1 comment

A beautiful and unique Valentine created by “Landon’s Gift” on Facebook. 

Recognizing the loss of Dekar with a beautifully written sympathy card

January 15, 2011 in Carrying to term, grief, hypoplastic left heart syndrome, infant death, sympathy card for infant, Trisomy 18/T18 | 2 comments

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

“Final diagnosis–Trisomy 18″…sent 4/28/08

December 10, 2010 in Carrying to term, grief, hypoplastic left heart syndrome, infant death, Making Every Moment Count, Trisomy 18/T18 | Leave a comment

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”!

 

Thankfulness 11-24-2010

November 24, 2010 in Carrying to term, grief, hypoplastic left heart syndrome, infant death, Making Every Moment Count, thankful, Trisomy 18/T18 | 1 comment

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.

 

Dekar’s Urn

June 29, 2010 in Carrying to term, grief, hypoplastic left heart syndrome, infant death, Making Every Moment Count, memorial item, Trisomy 18/T18 | Tags: , , , , | 4 comments

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

Joey, Charlize, Dekar and other Trisomy 18 babies

June 24, 2010 in Carrying to term, grief, hypoplastic left heart syndrome, infant death, Making Every Moment Count, Trisomy 18/T18 | 1 comment

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.”

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

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.

The Day After

June 22, 2010 in grief, hypoplastic left heart syndrome, infant death, Photos, Trisomy 18/T18 | 2 comments

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.

To Dekar–April 27th, 2010–22nd Month in Heaven

May 19, 2010 in grief, hypoplastic left heart syndrome, infant death, Making Every Moment Count, Trisomy 18/T18 | 1 comment

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.

Dekar’s eighteenth month in heaven!

December 27, 2009 in Trisomy 18/T18 | Tags: , , , , , , , , | 3 comments

Today is December 27th–Dekar Day!  Today Dekar would be eighteen months.  

Fortunately ice cream was on sale so I picked up four different Edy’s flavors: Berry Granola Crunch, Root Beer Float, Chocolate Peanut Butter Cup, and Mango.

A special thanks to the following for letting me know they are remembering Dekar with me:  Christine, Autumn and Jenny’s family, Sherri, and Martie.  Dekar Day calories don’t count. 🙂

‘Tis better to have loved and lost….

December 23, 2009 in Trisomy 18/T18 | Tags: , , | 2 comments

When you are sorrowful
look into your heart
and you shall see that
you are weeping
for that which has been
your delight.
~ Kahlil Gibran~
 
 
 
 

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