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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.
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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:
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:
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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
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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”.
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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. 😦
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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.
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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







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