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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

Sunday, December 18, 2016

To my dear Lilly girl

To my dearest Lilly,

Your brothers and I were talking at dinner tonight - wondering whether or not you ever get to peek down on us on earth.  If you do, then you know why I didn't write to you last Thursday.  On your 5th "angelversary."  

I'm not going to mislead you Lilly.  This year has been hard.  REALLY hard.  Hunter says it's been our worst year since you died.  Maybe you know what's going on.  But if not, I don't want to tell you and give you sadness because remember - "NO tears in heaven!"  It will be OK though.  I have the two most important things in life:  Jesus and Hope.

Last Monday I was coming home from an evening appointment and the alternator in the little old car I was driving died.  It was so dark outside but thankfully I finally made it home safely.  When I got home I found that my 5 month old laptop had died.  Your Uncle Patrick looked at it for me but there wasn't a quick fix.  And your sister had 6 appointments last week so I didn't have time to follow up on warranty stuff yet.  And that is why I didn't blog on your Angelversary.  

Here I am now though.  I gave in and bought another laptop - at a fantastic price.  Figure the way my luck runs with computers, it's great to have backup.


It was a bit weird in a way, that December 15 was on a Thursday this year.  Just like 2011 - the year you died.  This was the first time and well, it just was sort of unsettling.  I will always remember starting to pick you up from your nap that evening, and finding you dead.  Something so horrific for me yet such a blessing for you.  How can something be so contradictory?  

Sister hugs - last time I took pictures of you alive
And I am thankful, that most of the time, I only have good memories of you.  Of your smile, of how you loved to talk to us - and to ceiling fans!  Of your curiosity whenever we went anywhere.  Of how you liked to watch Tabby and Hunter.  Of how much you loved working hard in your therapy sessions. Of how you liked chocolate!  And playing with dried beans.  Of the time when you pushed and scooted across the floor.  Of how you were almost able to sit up on your own.  Of how, on the day you died, you had such a good day!


The boys and I were talking about a bunch of the pictures on your photo collage tonight at dinner.  It's the one I made for your viewing and funeral.  I love that we have it in the dining room and we can look at it.  Solomon is fascinated with hearing about you and likes to ask questions about you.  Hunter was pointing out all the photos he was in with you.  Lilly - he still likes machines!  Remember how fascinated he was by all your medical equipment?  He was only 2 and 3 years old then but he understood how to run them!

This just made Hunter and I laugh - here he is with Sam hooked up to a pulse ox that looked similar to yours!
On the 15th your siblings and I went out together.  Because of Tabby's health situation I didn't want to go to your grave.  You understand.  We went to the store and bought pansies to put in your little memorial garden we have here.  Pansies.  I know.  I have expanded my flower choices for you.  At first I would only allow lilies in your garden.  But then I realized it would look prettier and be more honoring of you to have pretty flowers in their all year long.  So you now have pansies.  Then in the late winter you will have daffodils popping up.  Pretty!  Though not as pretty as you were!  


Mommy loves you forever Lilly, and one day I will see you again!  Until then, the Lord will continue to be with us both.  Give Blueberry a hug for me Lilly.  I'm glad you two have each other.

All my love,
Mamma

"The Lord is close to the brokenhearted and saves those who are crushed in spirit." - Psalm 34:18

"The Lord delights in those who fear him, who put their hope in his unfailing love."  - Psalm 147:11


7 comments:

  1. Hugs from my family to yours. I was re-organizing my master photo library and ran into photos of you, Lilly and the family over the years and was wondering how you were doing. I know this is such a hard time and we send all the love possible to you.

    Steve

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    1. Hi Steve - so great to hear from you! Tabby was just asking me the other day for some copies of pictures you took of Lilly on her first birthday. We talked about how kind you were to us. :) I hope you and your family are well. And I am having a much more optimistic start to my day today. Sometimes writing just really helps. Take care!
      - Lisa

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  2. Lilly is just beautiful and so is your blog. You must miss her so much. I am happy that you got to enjoy so many special times with her. I am currently sitting here feeding my newborn who was also given a terminal chromosomal diagnosis at birth and reading your story is helping me to realise the beauty in enjoying each precious moment with my daughter. I am sorry you had to experience the loss of Lilly, no parent should ever go through that and I am so afraid of how I can survive it when my daughter's time comes.
    Kirsten

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    1. Kirsten - I'm so sorry about your sweet new baby! Be sure to take a photo EVERY day. Enjoy EVERY minute. It's so hard and sad yet there will be happy moments that you will cling to in your memories. Let your baby feel your love. I can tell you the first year after losing your child is the worst. Then it becomes more of a roller coaster after that. Thankfully you will find support from many online or in local groups. But you have to seek them out. Most people don't know what to say. And lean on God. He is close to the broken hearted. God bless you and your baby!

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  3. I love this story and I will pray for your family.

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