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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

Tuesday, December 15, 2015

The ocean of grief

"Grief is like the ocean; it comes on waves ebbing and flowing.  Sometimes the water is calm, and sometimes it is overwhelming. All we can do is learn to swim." - Vicki Harrison

I received the above quote in a recent card from the SOFT Bereavement Committee.   I just keep thinking about how true that quote is.

Tabby found this picture of Lilly this morning, reminding me how cute she was!
Today marks 4 years since Lilly passed away.  I'm in tumultuous waves.  I'm sitting here typing and feeling like I can barely breathe.  My whole body aches.  My inside is so tense even my teeth ache.  My mind is working so hard to try and keep away the images of Lilly when I found her dead and focus instead on how good her day was until then.  I wish I could just have a good cry because maybe I would feel better.  But my tears don't work properly. 

But soon - I'll be ok again and breathing normally and remembering Lilly with a smile.  The water will be calm again.

There's just something about "The Angelversary."  It's harder in a different way than the other days, including Lilly's birthday.  I dread it.  The farther we get into December the more I dread and even fear it.  Then it is here.  And, usually reflecting on the day after it passes, it's not as bad as I fear it will be.

Because we didn't go to her grave today, as we had in the past, I decided the boys and I would do a little donation project in Lilly's name.  Since it is Lilly's 4th Angelversary, we put together 4 "health kits" to donate to MAMA Project.  (A group that works with the poor in Honduras.) 

Yesterday we sewed Lilly-colored bags to put the things in.  The boys both helped with the sewing machine - Hunter handled the foot pedal and Solomon the presser foot while I guided the material:

The boys were so fascinated how the drawstring bags turned out that they begged me to sew them some.  Honestly I was a little irritated because I didn't want to cut fabric and sew any more bags.  But they were so very excited - and thankful for their bags - that it was worth it.

My mom sent me some money for my "Lilly Memorial Fund" and I used that today to buy the items needed for the health kits.  When we got home, Hunter divided everything up and then stuffed each bag:

I'll mail those off this week, along with a nice collection of small stuffed animals that each my kids gave up. 

I made a mistake at the store this morning.  I decided it would be fun to combine the boys Christmas shopping for other family members with our shopping for the donation items.  Never again!  The greed of getting and wanting things for Christmas quickly overpowered the sweetness of buying things for others in Lilly's name.

When we got home, I found a flower delivery from my dad and step-mom.  I look forward to all the beautiful lilies opening soon:

Last week I received this sweet framed picture of Lilly - embellished with lilies! - from the mom of a young woman that lived 19 years (!!) with Trisomy 18:

I smile every time I walk by the picture.

A.K., a co-worker of Frank, sent me this cute Lilly-colored angel potholder:

She's always been so thoughtful to consistently remember us and Lilly.

When I opened my inbox this morning, I had a sweet e-mail from my friend H.B. who wanted me to know she was thinking of Lilly and I.

As I reflect on these things - the kindness and generosity of others - it makes me feel better.  It really does.  That coupled with writing this post.  (Writing has always been incredibly therapeutic for me.)  I am even breathing easier now.  Thank you God!

"He has carried our sorrows." - Isaiah 53:4

Solomon added some humor to my day - running around wrapped in a Cars sheet that Tabby made him when he was a baby:

For Lilly's angel ornament this year, I got her the soft pink angel bunny - in the top right of her tree (angel theme, of course, this month):

"The Lord is close to the brokenhearted ..." - Psalm 34:18

My very last picture I took of Lilly - the day before she died:

sweet sisters
Tonight we will have Angel food with Cool Whip and strawberries and blueberries (gotta make the topping red/white/blue!).  I don't want to celebrate Lilly's death.  But I will celebrate her life.

See you again one day, my Lilly!


  1. Replies
    1. None needed. I know you understand and I thank you for being there.

  2. I am so glad you have your T18 friends who understand. Love to you.

    1. Yes - me too! I have an extra special bond with one of the mom's - the one who's t-18 daughter's angelversary is today. Love you and thank you for all YOUR support!

  3. Lisa,
    I couldn't help but cry as I read your post. I remember all too well reading your post about Lilly's death. I cried then too. At that time, I was pregnant with one of our Angel-babies--a girl. We lost her a few weeks later. She's with Lilly now along with all of our others. I look so forward to meeting all of my children in heaven...and Lilly.

    1. You've got a big group of children in heaven waiting to meet you! I like to think Lilly has met them all and they all talked about their mama's. :) So glad we will see them one day. I am still praying for you - for many things!

  4. Oh my heart breaks for you. You are an amazing mommy and truly and inspiration! I pray the Lord would comfort you, hold you and blessed you during this time. Lily is a beautiful and wonderful thank you for sharing her with us. Lots of love and prayers coming your way. Love the pictures!

    1. Thank you Tesha. I know you understand! It's fun to think that perhaps Lilly and Jonathan have met each other up in heaven!