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I was so tired.  After hearing Dekar’s diagnosis of Trisomy 18 and hypoplastic left heart syndrome my life became filled with so much uncertainty and the grieving began.  There were no promises I would ever see him with his eyes open.  So after the c-section and meeting my little guy I didn’t want to sleep at all. I wanted to take in every single moment.  After only a couple of hours I was exhausted, but happy:

I am soaking in every moment that Dekar is alive. I watched the kids hold him and kiss him and relished every moment. This picture reminds me of how hard it was to keep my eyes open and the feeling of pure exhaustion.

And I know my husband felt the same:

Here is my husband “resting while awake”. Isaiah kept him on his toes.

Very soon after those pictures were taken–the ones showing how tired we were–another picture was taken.  I was holding Dekar and this happened:

Dekar smiled!

 

I remember that moment. He looked me straight in the eyes and smiled–and it was such a real smile!   It literally took my by surprise and pierced my soul with joy!
 
It wasn’t long after the smile that it became obvious he was leaving us.  His eyes started glossing over and his heart rate continuously decreased.  We all held him one more time and said good-bye. 
 

Later on I realized even more what a gift his smile was–and how much he said to me in that fleeting moment!  “I love you, Mom, and I’m so glad I got to see your face and feel your kisses.  I love Daddy and all my brothers and sisters, too.  It was so fun being held and loved by everybody.  But I’m tired and I can’t do this much longer. I have to go soon. I know you will be sad, but I’ll see you again…. Mom–Thank you for giving me life. It has been a good one. I know I am loved and always will be.  So are you.” 
 
He said it all in that one smile. And what a blessing it was that Hali was right there and captured the moment.
 
 
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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

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