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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Monday, November 2, 2015

30 Days of Thankfulness - Days 1-2

Life is full of rocky paths and thorns.  It can be hard for me to focus on the sunshine.  (Especially with all the rain we've had lately.)   I've never been one of the bubbly, cheerful types and that's OK.  But I tend to be way too serious too much, I think.  If you've ever studied the personality types, I am a melancholy-phlegmatic.  (If you have no idea what I'm talking about, check out this website for a good summary.) 

I had the idea awhile back to do a "30 Days of Thankfulness" blog series for November, like many bloggers do.  And now that it's time to do it, I really don't want to.  But I am going to make myself because I believe it will be good for me.  I want to take a photograph of something each day, that makes me thankful.  I like how taking a photograph makes me zero in on something. 

I need to work on this:

"I will give thanks to the Lord with my whole heart; I will recount all of your wonderful deeds." - Psalm 9:1

Day 1:  My new camera

If you've read this blog for awhile, you've probably heard me express my frustration with my Nikon Coolpix camera.  (Great - starting off with a complaint!)  I am now the very grateful owner of a new camera - a Nikon D40.  (OK - it's an older camera that I bought refurbished.)  I used birthday money and sold some things on Ebay so I could buy it.  It's the fanciest-shmansiest camera I've ever used.  A dear friend that consistently takes great photos has one (co-owner of The Haven Enterprises) and recommended it.  I know it won't automatically make me a great photographer, but well, it's already making me happier than the old camera.

(Yeah ok - not a good picture but you get the idea. I couldn't figure out lighting because it's so dark and dreary out today.)

Day 2:  My Trisomy world friends

Through my blog and a Facebook Trisomy 18 parents group, I have gotten to know many moms of children with Trisomy 18 around the country.  The trisomy gives us an instant bond.  Add to that a child that passed away there is an even deeper bond.  

My refrigerator has several pictures/cards on it from my Trisomy world.  Lilly at the top next to Emily (who is still living!), and below is a card of Hannah Grace with Lilly, and Julia, and Mary-Margaret's funeral handout, and a photo of the New River Gorge Bridge in WV from Jordan's mom.  These pictures remind me to pray for Emily, and for the families of the other angel babies.

Last year, I met Jennifer, Mary-Margaret's mama online.  She had received one of our angel box donations to UNC.  I really enjoyed getting to know this sweet woman and cheering on her baby girl.  Mary-Margaret lived 5 months.  I met Jennifer in person at Mary-Margaret's funeral.  We stayed in contact and encouraged each other.

Last Thursday, I was shocked and saddened to learn that Jennifer had been killed in a car accident.  (Her obituary is here.)  I still find myself tearing up every time I think about it.  In the Trisomy 18 world we expect to cry over our babies.  But this is the first time I've cried over one of the parents dying.  Picturing Jennifer reunited with her beloved Mary-Margaret is so wonderful.  But my heart aches for her two young sons still here.  It makes me think of my own children and what if I died?

We tend to go through life not thinking a lot about death.  Which is good!  But then there are deaths that make us soberly reflect on it deeply for awhile.  We are not invincible and we really haven't any idea when our time will be up.

I will end this with one of my favorite photos of Jennifer and Mary-Margaret.  I remember snuggling my Lilly like that and it was so wonderful.

"He will wipe every tear from their eyes. There will be no more death' or mourning or crying or pain, for the old order of things has passed away." - Revelation 21:4


  1. Little M&M was a beautiful baby and as sad as it is, I am sure Jennifer is happy to be with her again.

    Glad to hear that you got your new camera! And I think the picture is cute! Your hair looks fabulous. I am growing mine out again and I am anxious. LOL

    1. Yes - what a sweet reunion! I'll keep praying for her sons.
      Thank you for the compliment about my hair. I stopped blow drying and straightening it and have been astounded at how much wave and curl I have. I like it so much better! I'm curious to see what you will do next with your hair! ;)

  2. Oh that is heartbreaking, really sad. My heart hurts for her family I ca just imagine the getting she got from her baby girl! SO happy you got a new camera I look forward to lots of lovely pictures.