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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, March 19, 2013

Trisomy 18 Awareness Day

Yesterday was March 18, so in this month of "Trisomy Awareness" that made it Trisomy 18 Awareness Day.  My day yesterday was so busy though I wasn't "aware" of it until this morning!  So I'm sorry Miss Lilly - my post is a day late.  (Though it's never really late - my little Trisomy 18 girl is in my heart every day.)

We were blessed to have Lilly with us for one March.  March of 2011.  Here are some pictures of her from that month - she was 8 months old:

I was looking back at my notes on Lilly's life.  Right before the one Trisomy 18 Awareness Day that she was alive, we had gotten the disappointing news that she had been rejected for heart surgery.  This was by the doctors at Wolfson Children's Hospital in Florida that had already operated and put in her pulmonary artery band.  I remember feeling just crushed because I had no idea who would do the needed surgery since we already knew no one locally would.  (Indeed, very few surgeons in the country will operate on Trisomy 18 children.)  However, that story had a happy ending because later that year, the doctors reconsidered and then performed the heart surgery Lilly needed to repair her two VSD's. (She had two holes in her heart that did not close on their own.  Very common with Trisomy 18 children.)  We remain so grateful to our local cardiologist, Dr. R, for pushing so hard for Lilly.

Trisomy 18 angel Julia's mom wrote an excellent blogpost yesterday on some important highlights of Trisomy 18 Awareness Day.  Read her post: .

A mom in the Trisomy Angel Parent's group asked us how we respond when someone asks how many children we have.  It seems that we all find ways to include our angel children in our responses.  And when we don't we end up feeling terribly guilty and/or disloyal to that child in heaven.  Sometimes answers change according to the situation.  (Ex. out in public, in a situation where you don't have time to explain, etc.)  My usual answer is "Four."  Often the person will then ask the children's ages.  For Lilly I say "my 17 month old daughter is in heaven."  Or, again according the situation, I like to say "Three with me and one in heaven."

My mother-in-law recently shared with me another answer that I think is good for certain situations.  (Her youngest passed away at 15.  Lilly is buried next to her.)  She said if someone asks her how many children she has, she may respond "three living children."  By saying "living children" you let the person know there was at least one other child.  Then if they want to pursue asking further, they can.

Psalm 121 - A Song of Ascents.
I will lift up my eyes to the hills—
From whence comes my help?
My help comes from the Lord,
Who made heaven and earth.
He will not allow your foot to be moved;
He who keeps you will not slumber.
Behold, He who keeps Israel
Shall neither slumber nor sleep.
The Lord is your keeper;
The Lord is your shade at your right hand.
The sun shall not strike you by day,
Nor the moon by night.
The Lord shall preserve you from all evil;
He shall preserve your soul.
The Lord shall preserve your going out and your coming in
From this time forth, and even forevermore.

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