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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, December 22, 2017

Lilly's Pulse Ox is in ... Honduras!

"I can't say I'm very excited about the new pulse ox, Mama." - Lilly (Dec. 2011)
This morning I was reading through a newsletter from "Healthy Ninos Honduras," which is a new organization by MAMA Project.  Suddenly I noticed a picture of a baby hooked up to a blue & black colored pulse ox and thought "wow - Lilly used to have one just like that!"  Then I read that section:

"A family in the USA unfortunately suffered the loss of a child.  As they sorted their child's belongings, they decided to donate a few items to our work in Honduras.  Little did they know the difference it would make!

Donations were given to the maternity public clinic in Santa Cruz. Shortly after receiving the donation, the one nurse asked to be excused to use the oximeter on a baby they were monitoring that day.  The Staff told them they were using an oximeter designed for adults and we [are] extremely grateful for the gift!"

It hit me then - that WAS Lilly's pulse ox in the photo!  I had forgotten that I had donated it to them back in October 2015.  (My blogpost on that is here.) 

How awesome is that??!!  Lilly's pulse ox is being put to good use helping babies in Honduras.  I LOVE that.  It totally made my day.  :)

Link to newletter:

Good job Miss Lilly!  You're still blessing others!

Just for laughs, here is an old photo of Hunter (he was 3).  He was so enamored with Lilly's pulse ox that he had me help him make one for his dog Sam.

Sunday, December 17, 2017

Lilly's 6th Angelversary

Dearest Lilly,

I was so glad to get to bring your Christmas tree Friday.  December 15th ... your Angelversary.  The events of that day in 2011 forever burned into my mind.

Your old Christmas tree had finally fallen apart.  Mom Jenny gave me this artificial tree branch and I picked out some ornaments at Walmart to put on it.  I think it turned out nice.  Red white and blue - for my July 4th baby!  I really liked how the red glittery bows sparkled in the sunshine.  Beautiful!  Though not as beautiful as you of course.  

Do you like your new cherub?  It was time to replace your original one.  It was cracked badly and parts were gone.  It is not easy picking out a new cherub!  I looked on Amazon and the choices were overwhelming!  I felt so frustrated because I wanted you to have the perfect one.  Just when I felt like giving up, I saw it!  I just knew that was THE ONE!

I did notice the cherub isn't quite as heavy as your original one though, so I hope it stays put OK.  I brought your old one home to put in your memorial garden.  (Which is colorful with pansies for the winter.)

As usual I'm anxious to hurry and get through December.  I'm looking forward to the new year and what always feels like a fresh start January 1st.  So many things in life have spiraled out of control since you died.  But we're picking up the pieces and healing.  It sure can be a slow, confusing journey.  But I am blessed to have HOPE.

"'For I know the plans I have for you,' declares the LORD, 'plans to prosper you and not to harm you, plans to give you hope and a future.'" - Jeremiah 29:11

Love always,

Tuesday, July 4, 2017

Happy heavenly 7th birthday Lilly!

"Mama - just what is this crazy outfit you have on me?!"
photo credit: Steve Rubin Photography
Dearest Lilly,

Letters usually start with a "how are you?"  But wouldn't that be rather silly for me to start your birthday letter that way?  After all - I know that you are perfect, whole, and full of joy!  You have everything that those of us still on earth long for!  And that makes me SO happy for you.

So instead I will get to the point: HAPPY BIRTHDAY LILLY!!!!!  Yes today is birthday number 7 for you.  Amazing!  I sometimes wonder what it would be like to have a 7 year old little girl running around the house.  But I know that wasn't God's plan for you.  You packed a whole lot of living into 17 months.  You definitely lived up to your nickname of "Little Firecracker!"

Your little brother Solomon loves to hear stories about you and ask questions about you.  He is super into all things holiday.  Lilly's birthday/Independence Day is no exception.  He delights in the Lilly-colored decorations all over the house and in the stores.  He made special star shaped chocolate lollipops for Tabby and her friends to eat, in memory of your birthday.

Big brother Hunter seems to remain just as interested in hearing stories about your medical equipment as he does you.  You know that's just how his brain works!  Yep - engineer boy.  Do you remember how he was only 2 years old and helping me operate your milk pump, oxygen, and pulse ox?  And nebulizer ... etc.  

And Tabby.  She remains as fiercely proud of you as ever.  And still hurts having lost her special little sister.

Speaking of stores, your siblings and I were at Walmart a few days ago.  Tabby and I stopped in front of the red/white/blue clothing for little girls.  Tabby pointed out an outfit that she would have loved to get for you.  I pointed out the ones that I thought you'd look adorable in.  There were several "awwwww" moments before we could move on.

And that got me to remembering how when you turned 1 year old, I had a collection of red/white/blue clothing for you to wear.  You had many days of celebrating in your colors!

Shall I remind you of some?

I guess you should have had a special red/white/blue outfit to wear home from the hospital on the day you were born.  Only I had no idea you were going to be born on the 4th of July!  You were due on June 17th.  Oh well!  

Well my Lilly girl, I've got go now.  We've got some celebrating to do.  We'll be sending your birthday balloons up to you later!

Love forever,