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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, May 13, 2013

Visits to the hospital and Lilly's grave for Mother's Day

Warning - if you only like to ready happy, jolly Mother's day posts then stop reading here!

Every since Lilly entered my life, Mother's Day has been a jumbled up day.  The one Mother's Day we were blessed to spend together, she was in the hospital with a virus.  She code blued that morning and almost died right before my eyes.  I just re-read the blog post I had written about it, and thought about how numb I was writing it.  It conveys very little of the complete horror and all the emotions I felt, and much description.  But of course I won't forget and I can still see much of the scene played over in my mind very clearly.

Aside from my Lilly though, Mother's Day makes me think of so many other children I know of who are now in heaven.  Not only so very very many other children that had Trisomy 18 like Lilly did, but some children that were healthy otherwise, but died in an accident.  And quite a few miscarried babies.  My heart aches for these other moms.  Mother's Day is just a reminder of all that.  Not that we don't think about our angel children every single day anyway.  But somehow Mother's Day is just more "in your face."  Makes me wonder who made up Mother's Day - was it a greeting card company?

Did you know that the Sunday before Mother's Day is Bereaved Mother's Day?  Now that's not happy sounding at all.  But at least those mom's and children get the official "in your face" recognition.  Only most probably don't because not a lot of people know about it.  Maybe those greeting card companies would help out by publicizing it more.  Aaron is a 3 year old boy who is still living, in spite of having Trisomy 18 and being through many hospitalizations.  His mother wrote a very good blog post on Bereaved Mother's Day which you can read here

I appreciate so much of the work done by SOFT, a support organization for Trisomy 18, 13, and related disorders.  This weekend they put up a moving banner of Trisomy children and their mommies.  It makes me feel good that they find so many ways to honor Trisomy children and their families.  Lilly and I are included in the mommy collages!  (Go to their homepage and scroll down.)  They have the below picture of us cropped and in the first three collages.  (You can click on the little round buttons at the bottom of the collage to get to those pages.)  The reason I choose this picture of Lilly and I from her 1st birthday party was because of the huge milestone it was for her to reach that day.

We started off Mother's Day this year with a trip to the ... emergency room!  My husband must have thought that would make the day extra memorable for us.  (Actually his mama made him go!)  On Saturday he said his finger was bothering him (it looked like he had a blood blister that was growing) and that he felt incredibly tired.  By yesterday morning his finger was huge and gross and a dark oozing purple.  It really hurt him and he could barely keep his eyes open.  My brother-in-law took him to the emergency room.  They are guessing he got a spider bite and cut the wound open and drained it.  Gave him an antibiotic by IV and a pain killer.  They did a quick test on his blood and that came back normal.  Then they sent him home with a prescription for more antibiotic.  Lord willing, he'll be feeling back to normal before long.

In the afternoon, we visited Miss Lilly's grave and took her a new wreath.  Even though I know it's just her body in the ground - that her soul is in heaven and her memories with me wherever I go - it felt good being at her grave.  Another physical reminder that she lived on this earth with us.  Here is Solomon by Lilly's graveside yesterday:

"Set your minds on things above, not on earthly things." - Colossians 3:2


  1. What a heartfelt and authentic post! I so appreciate your perspective and I know that it took great courage to share. There are so many feelings related to Mother's Day. I've been to churches where the moms stand and get applause on Mother's Day and although I'm standing and I love it, I do find myself hurting for others. Those who have lost a child, struggle with infertility, miscarried, had abortions or complicated family issues. It's not all happy, happy, joy, joy. The Lord has specially equipped you for this journey of motherhood and I am very proud of you for sharing. Your buddy, Cindy

  2. Thank you Cindy! A friend suggested we stick to the church calendar, birthdays, Thanksgiving, and Independence Day/Lilly's b'day and that be it. I think I like that!

  3. Oh how that picture of Lily breaks my heart. I love the wreath and Solomon sitting there next to it. Happy Mother's day my friend I am blessed to know you and Lily through our blog.

    1. Thank you Tesha! I enjoyed your Mother's Day post with pictures!