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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

Friday, August 22, 2014

A flash of anger (on the grief roller coaster)

Earlier this month, as I changed the decorations on Lilly's tree from July to August, I suddenly felt angry.

I felt angry that Lilly was not alive and with us anymore. I felt angry that there was a gap between Solomon and Hunter where their sister should have been.  I felt angry that she only lived 17 months and that I obviously had made bad decisions because she died. (This thought was quickly followed by guilt because even though there are children with Trisomy 18 that are alive and even in their teens, or older!, I know Lilly lived longer than most. My heart hurts for the families who lost their T-18 children in the womb, or so quickly after their births.)  Then I felt angry about how I found Lilly dead, after her nap.  That I couldn't prevent it.  That her body was so cold.  I felt mad about how it gets confusing at times when people ask me how many children I have, or I am setting the table and trying to figure out how many places to set.  I felt mad that my children have to take treks to their sister's grave instead of getting to play with her.  Etc etc.

Now I wasn't furious and in a rage or anything.  I just felt rather mad.  I wasn't mad at God or anyone in particular.  It was just an "I'm angry in general" sort of feeling.  And then it was gone.  I know that anger is a "normal" part of grief.  So why am I feeling it about 2.5 years after Lilly's death?  Is that part normal?  Obviously it is for me.  I've always been one to suppress my feelings/emotions so sure, this is normal for me.  That something traumatic sort of leaks out later on.  We all mourn differently.

Earlier this week, I took down all of Lilly's dresses that I have hanging up, and washed them.  I put them back on their hangers then arranged them back on the rack on the wall.  I didn't feel any anger.  I felt some sadness, but didn't cry or anything.  I dusted off Lilly's things on my dresser and found a few things that I decided to put away, out of sight.  I have been finding, the past few months, as I have been cleaning, organizing, and painting rooms in the house, that I do not feel the need to have as much of Lilly's stuff out on display anymore.

This sort of worried me at first because I sure didn't want anyone (or me) to think she wasn't important to me anymore, or I was forgetting about her.  I can't get through a day without thinking of her many times.  But, maybe that just means I am healing.  I know she's in my heart and mind forever and if I decide, for example, I don't need ALL the church dresses she ever wore constantly on display, then that's OK.

I have a friend that lost her daughter, at 6 months, to Down Syndrome.   (She had many heart problems.)  My friend mentioned having "a box" for her daughter's things.  I was stunned.  Only ONE box?  My friend noted her daughter had died 12 years ago.  I thought about it.  I have boxes and boxes and boxes of Lilly's things!  I have a bunch of those rubbermaid type totes in the attic full of all the clothes she ever wore. A tote with her blankets.  A tote with her toys. Special things of her's scattered around the house.  Most of her medical stuff in the bathroom closet.  Etc.  I wondered if I would ever be able to narrow things down - or if I would even want to.

But this summer, like I said, I have actually felt fine about putting SOME things away.  Not giving anything away.  Not yet.  But just not needing so much right in front of me.

What will this journey bring next, I have no idea.  It's been a roller coaster.  But I don't regret a day of it.  I am thankful for all 529 of Lilly's days.  No matter how long I hurt missing her, it was so worth every second of having her.

Lilly at 6 months
"And we know that all things work together for good to those who love God, to those who are called according to His purpose." - Romans 8:28


  1. You are such a wonderful mommy and a wonderful testimony! Grief is hard but you always season the sadness with the hope of Jesus! Praying for you to have an extra dose of the Holy Spirt and his peace that surpasses understanding.

  2. Thank you Tesha - I know you understand very well! What would we do without Jesus?!!