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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, January 29, 2012

The camellia bush

This picture of Lilly is from March of last year. I am holding her in front of our camellia bush. I love this bush - it begins blooming towards the end of January and is in full bloom in February and lasts into March. I love cutting flowers from it to put in the bud vases that line my window sill in the kitchen. (I posted pictures of Lilly in front of the bush last year in this post.)

I was able to cut a half dozen flowers a few days ago. As always, they are beautiful and cheery. This year I just keep thinking of Lilly whenever I see the bush and about the pictures I took of her in front of it. I'm so glad she was with us for 529 days! We got to experience so much together and create so many memories.

Today I made sympathy cards for two families that are members of Samaritan Ministries (our health insurance alternative group). Both families lost babies. (A set of stillborn twin boys for one family, and a baby girl that only lived a few moments for another family.) I made our sympathy cards we use - they have paintings of Jesus with children that I found and copied from online, and I added this Bible verse to them:

"Jesus said, 'Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these.'” - Matthew 19:14

I love thinking about the kingdom of heaven belonging to Lilly and children like her. But this verse can also apply to us. I recently came across this quote by Charles Wesley:

"Gentle Jesus, meek and mild,
Look upon a little child,
Pity my simplicity,
Suffer me to come to Thee."

I like that.

I had a new comment today, in response to an old post. It was from a woman named Barbara. She wrote: "i completely understand what you are going through. on jan. 9, 2012 i gave birth to a beautiful little girl summer hope at 21 weeks i found out she had t-18 and hlhs the drs. wanted me to terminate but i didnt i carried her 9 months and had 9 wonderful hrs with her after birth she weighed 4lbs 2 oz and was 17 1/2 inches long. IN the 9hrs.summer gave us we learned alot about our little angel she was left handed like her daddy,had her brothers eyes nose and feet and my ears and lots of my black hair. MAY Lilly and SUMMER forever be in our hearts and prayers." HEAVENS LITTLE ANGELS"

Thank you so much Barbara for sharing that. May the Lord bless and comfort your family as you remember and cherish the time you had with Summer Hope!

A family of our Trisomy community on Facebook sadly lost their little Grayson yesterday. He had been born Friday and had Trisomy 13. I'm so glad the family got to spend some time with him and get pictures. Having pictures is such a huge blessing.

Bella Sanatorum, the three year old daughter of former senator Rick Santorum has been hospitalized for pneumonia. Bella has Trisomy 18. Thankfully I read this evening she is doing better. It seems that pneumonia is just running rampant right now. I've known a number of "normal" kids and adults that have gotten it this winter. Just a cold can be so dangerous to a Trisomy 18 child, so that is really exciting when one pulls through pneumonia.

Finally, I'm getting a lot of people asking how I'm feeling. I'm about 7 weeks pregnant. I have some weird symptoms: hot flashes, I gag when I brush my teeth, the inside of my nose feels swollen, and I feel like I need a nap in the afternoon. So really - I'm doing well. And honestly, I am still surprised at God's grace in all this.

And I just keep wondering - what will happen next?!

2 comments:

  1. Surprises at God's Grace????

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  2. love to see lilly wearing her mama's baby dresses! the blue dress in this picture was from lisa's grandmother, lilly's great grandmother. :-)

    ReplyDelete