Lilly's beautification routine

Victory! Isn't that a great word? Notice the beautiful yellow rose in this first picture. It's called a "Victory Rose." Isn't that a fitting name for Lilly's first plant? A little Victory Rose bush was given to Lilly by the C. family when they visited her in the hospital last fall. We brought the plant home and it's doing well, just as Lilly is.

Every morning around 9:00 Lilly gets her morning medications. While we're sitting there, I often take advantage of that time to give her her daily beauty treatment.

First I dip a sponge-on-a-stick into water and use it to clean off her lips. She also greatly enjoys sucking the water off the sponge. Then if she's sounding congested I squeeze saline nose drops into her nose, wait a minute, then use the bulb syringe to clear her nose out. Next I rub cocoa butter onto the dry side of her face. (It's always the side that had the tape on it last.) I think we've got her cradle cap cleared up except a little left around her eyebrows. There I rub in some coconut oil, and then after a few minutes wipe it off, along with the cradle cap stuff. Next it's handwashing time at the sink. Since Lilly keeps her hands closed, they can get pretty smelly! So we wash her hands. Then often after drying them, I insert her "diplomas." (Rolled up bits of washcloth to try and encourage her to loosen up her grip.) Finally the fun part - getting her out of her nightgown and dressed for the day.

(second picture) Sneaky Lilly strikes again! I put her on the changing table and before I knew it - her sock was off and she was laying there all innocent and still. How does she do that?!

Yesterday in a google search, I came across a YouTube video of another girl with Trisomy 18 named "Lilly." This little baby only lived 6 hours. The video shows her with her parents in the hospital. Her father is rocking her in a chair. Little Lilly is so still in his arms and he is looking down at her. Then he glances up into the camera. In that brief moment I could see the pain in his face of his heart breaking. I couldn't watch anymore.

"For what is your life? It is even a vapor that appears for a little time and then vanishes away." - James 4:14

That video reminded me that that is the reality for the majority of parents of Trisomy 18 children. I don't always think about that, nor do I honestly want to. I feel so much safer surrounded by my little group of other mamas of trisomy 18 babies/toddlers that are doing well. In fact, just today I got an e-mail from the mother of F., who is TWO years old. And I talked on the phone with the mama of G. who is exactly one month younger than Lilly. Both of these little girls are really doing quite well. What wonderful encouragement.


I was struck this evening by the thought that when God chooses to give a Trisomy 18 baby to a family that that does not mean a curse. It is an HONOR. I'm not saying there's not pain involved. But as I look at Lilly's face (she's in my lap right now smiling at me) I can see what a glory to our Father she is.

(last picture) I love this picture of my husband holding Lilly. Her head looks so small in his hand. But it's "gift wrapped" in her headband and bow.