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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, March 9, 2012

Dresser display

Last week I put the "Lilly colored" tablerunner that we recently received as a gift on my dresser. Then I arranged some of Lilly's things on it. (I hope to eventually have room to do this on a table in the main part of the house.) I love it! :) Some of the things I have: Lilly's sunglasses and sun hat, her Easter bunny hat, her last pair of slippers, her hairbrush, the teddy bear that came with her coffin (the bear is wearing a hat knitted by my friend K.L. and Lilly wore it after she was born), Lilly's hat from the hospital the day she was born, the red/white/blue balloon weight from her first birthday, both her red and black pairs of Mary Janes (also knitted by K.L.) - they are in the "Lilly colored" fabric bowl we received as a gift along with her first pair of hand splints, and a couple cherubs that I picked up at thrift shops. I also have things that belonged to Lilly's namesakes. I have the Bible that belonged to her great-great grandmother Lillian, and two pretty glasses that were her great-grandmother Eva's. Inside one glass are a couple of her "button buddies" (g-tube covers) and inside the other is her very first bracelet from M.B.

For many years I have had a framed card of Mary kissing Jesus which says "Kissing the face of God." It was funny - just the other day, my aunt e-mailed me that picture (without the words on the card I have) and said the baby reminded her of Lilly!

Yesterday we attended the funeral of the 7 week old baby from church that died suddenly on Sunday. It was hard. And of course as hard as it was for me I know it was so much harder on the poor parents. A big part that made it hard for me was that it was held at the same church that Lilly's funeral was. Plus the same pastor spoke, we had one of the same song leaders, and the little baby had what looked like the same coffin as Lilly (or pretty close) sitting in the same place. So many similarities. I found that it was best for me not to look at the coffin. The pastor mentioned Lilly at one point and I was so happy yet that really made me cry. I guess because it's been a bit less than 3 months and everything is still so raw. Or maybe it will always be like this?

Part of my sadness was for the young parents that lost their little boy. We know how they feel. To an extent. I believe we all have our own "twist" on grieving. There are similarities. But each death is a little different and with that brings it's own set of grief. I've been thinking so much of possible things our family can do to help this couple. What gifts might help. What things will bring comfort. What we can say and do. In thinking about a number of ideas, I keep thinking about how everyone is different in what means something and what doesn't. (I even see this in my own family.) But I can say that it's the "thought that counts" is huge.

And that brings me back to something I've been trying to share through this blog because I don't think most of us really know how to handle death. Something that I am still learning about. But basically, when someone is hurt and grieving just do something. Send a card, call them, visit them, email - in the least acknowledge what has happened. If you're a Christian - tell them you're praying for them. That is so comforting. Make or buy a special gift. (We love that Lilly was born on July 4 - that gives her a certain "theme" that makes Independence day stuff easy and fitting to buy to remember her.) Remember them on anniversaries. I recently compiled a list of Trisomy parents I know and their children's birth and (if it's happened yet) death dates. I'm doing a "card ministry" to each on these dates, just to let them know their children are being remembered and we're praying for their family.

I know it can feel really awkward to be around grieving people and none of us want to say the wrong thing. But at least say "I'm sorry." And it's great if you can share a good memory you have about the person that died.

I'm not trying to beat this point to death. :) I'm just sharing what I've learned and am still learning. I regret that there were times in my past that I was probably not as sensitive as I should have been to others. I hope that I am no longer that way.

"Rejoice with those who rejoice; mourn with those who mourn." - Romans 12:15


  1. If you ever need a T-18 baby to cuddle with come on up to MI and visit us! We would love to see you. I love the table you put together. I am still praying for your family.

    Faith's Big Sis

  2. I love having a few things around to look at. I have Pop's tractor and a car. And I have Davy's helicopter and books. So I know how you must treasure this display. xxoo