Friday, April 30, 2010

Then and Now

Wow! A year has passed! It surely doesn't seem like it. Does it ever? It has been such a crazy year. Look at how much has changed.

Look at Lily's arms and legs and cheeks and how much they've filled out.

Look at Lily's face in the first picture. That was during therapy. Oh how she used to scream and cry and whine during therapy! Now she smiles at the therapists and cooperates. . .most of the time.

Lily is now beginning--and I stress beginning--to take a bottle and to eat baby food. She's still trying to learn how her tongue is supposed to work with the bottle nipple, and she doesn't really want a spoon near her mouth. But she loves bananas from our finger and on the bottle nipple, and she's beginning to open her mouth to accept the bottle. It's all short-lived, but it's unbelievable progress!

She's beginning to give me at least five hours of uninterrupted sleep each night. That's considerable improvement from the three hour "nap" I'd get.

She doesn't cry as much as she used to. I really believe she had sensory issues. It's almost like the child has "grown" into her skin.

Again, wow! It's amazing and beautiful to see this little girl at this point, to know where she was developmentally, and to get to experience where she is. Happy birthday, little girl!

Tuesday, April 27, 2010

A happy day

A year ago today, I had what I'm sad to say was the worst birthday ever. The whole day I was consumed with thoughts of Lily. Was she going to be born on my birthday? Was she going to make it alive? Was that day that should really be a day for celebrating going to be the worst day for the rest of my life?
It turns out that the day came and went, and Lily decided to wait a few more days before she was to show her face to the world. And it's now a year later, and she is still here with us. I breath in this birthday with so much gratitude.
And there's so much more to celebrate. Last night, Lily rolled over from her back to her tummy three times! Boy was she mad when she rolled the first time! She doesn't like tummy time, so she quickly rolled right back over to her back, which she's been able to do for a while now, but watching her roll filled me with such excitement. I love it when she does something new.
She gave me a great present, too! She slept from 10:30 until 6:00 this morning! Of course, I didn't go to sleep right away, so I didn't get the full effect. But 6 1/2 straight hours of sleep is better than 3 any day of the week. Thank you, Lily!
I'm still collecting pictures for the slideshow of Trisomy 18 miracles. I've got 11 so far. I'd really like to have at least 20, but I'd love more than that. If you've got a miracle but you haven't sent one yet, you can send a picture to I'd love to include your child. (Oh, and I'm excited because I got a picture of a girl who's 21 years old! Wow! What an accomplishment!) Come on! Add your child's picture with hers!

Thursday, April 22, 2010

You're Invited

I just cannot believe that Lily is going to be one in a few days. What a nice birthday present!
Dave and I went back and forth as to whether to have a drop-in like we had for her 6 month or whether to have a regular party. We decided to have a party. Well, more like a celebration.
Because we wanted to have a slideshow of Lily's first year, we knew our house wasn't the place to be, so we're going to have the party at our church instead.
If you'd like to come, you are certainly invited. Our plan is to have the slideshow of Lily, give a little information about Trisomy 18 and share how Lily fairs with the condition, and praise God for this blessing he has given us. Our friend, Momma Ray, is going to talk about miracles, and then we're going to show another slideshow--this time of other Trisomy 18 miracles (still accepting pictures of YOUR miracles, by the way. Just email me at And unless things change, we're also going to have a little live entertainment from a local musician named Chris Ndeti, who just has to be one of the best female singers I've ever heard. (You can go to YouTube and see her rendition of "Don't Stop Believin" to hear her sound.) Gosh, I'm so excited!
So if you're close enough to us, come celebrate with us on May 2 from 2:00-3:30 at Fairview Presbyterian Church Fellowship Hall, 1101 Carolina Ave., North Augusta, South Carolina 29841.
And if you can't come, but you'd like to send Lily a card, you can send it to Lily Smith, 607 Hampton Ave., Belvedere, SC 29841.
What an accomplishment for this little girl! It's been the most difficult year I've ever experienced, but it has also been the most rewarding. Funny how suffering works. Romans 5:3-5 says it all.

Wednesday, April 14, 2010

A small request

Lily will be turning a year on the 30th of this month. Rather than have a traditional birthday party, we're going to have a celebration of life and a little program that highlights her year, informs her guests about Trisomy 18, and celebrates our little miracles. A friend of mine is going to talk about miracles, and then we'd like to show a slideshow of Trisomy 18 miracles.
We would be honored to be able to add a picture of your child to our slideshow to show our guests (some who may be of the medical profession) the miracles that exist in the world of Trisomy 18. If you wouldn't mind your child's picture being displayed, would you please send me a picture at If you do so, please include your child's name (I won't display last names), age (if appropriate), birthdate, and/or angel date (if appropriate--and yes, they are our miracles, too).
I thank you, in advance, for allowing me to show others our world. More birthday information to come. . .