Living with (Lily) Grace

Last week, I was overwhelmed with worry over Lily.

Because she doesn't sleep well at night and because one night she slept for one hour before finally falling asleep at 6 in the morning, I called Lily's doctor and told him that Dave and I were at our wit's end. He asked me how long I've let her cry. Not long. I usually hold her and pat her back. He asked how long Dave has let her cry. Maybe an hour. Maybe a little more. He said we're just going to have to let her cry. Put her down and let her cry for an hour. After an hour has passed, pick her up and comfort her, but put her back down. If you have to let her cry for another hour, do it. Needless to say, it's not that easy when you feed a child every 3 hours, especially in the middle of the night.

Dave and I moved to the computer room and have been uncomfortably sleeping on the futon for three weeks or so. And Lily has been crying. There were a few times when I went into the bedroom, and she was lodged in the corner of the crib. She just moves around so much! But it scares me. I'm always afraid of what I'm going to find. One night, I awoke at 3 (a usual feeding time for the week) to find that she wasn't crying. It worried me so much, I got out of bed and went to check on her. All was well.

I know it sounds horrible that we're letting her cry, but we hope that one of these days she'll catch on that she's supposed to sleep at night. Plus, we are in desperate need of sleep!

I have to say that Lily is doing a little better. It's just that she wants to stay up from about 11:00 to about 2:00. Once she falls asleep at that late hour, she does sleep pretty well. Maybe it's working.

But I've digressed. Like I said, I just worried so much about her. I came across this quote that Sydney Grace's mom found on another blog.


.......To live with the conscious knowledge of the shadow of uncertainty, with the knowledge that disaster or tragedy could strike at any time; to be afraid and to know and acknowledge your fear, and still to live creatively and with unstinting love: that is to live with Grace. Peter Henry Abrahams

I live with that fear every day of my life. I am afraid of the uncertainty. When is Lily's tragedy going to strike? But like all of the other moms out there who live with that fear, the sum of my fears are nowhere near equal to the depth of my love for this little girl. I'm not patting myself on the back here. It seems human nature to me. But for sure, that is to live with (Lily) Grace.

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Lily had to go to the doctor today. It seems she got Gabriel's cold and I heard a little wheezing. She's on some antibiotics for her ears that might be infected (The doctor can't see down her ear canal because it's so small. Lily's constantly pulling on her ears, and luckily, she did it when she was at the doctor, so he put her on some medicine, thinking that it won't hurt just in case she does have an ear infection, but also hoping that it will stop what this cold could become.) She has a wet cough and just not acting like she feels very good. Poor little girl.

She loves her daddy's kisses

It's Snowing!

I can't help it. I come from the South, where school snow days means, if we're lucky, we got 1/4" of snow. I guarantee you, if I went in to Kroger right now, there would be no milk and no bread on the shelves, even though the prediction is that it's going to snow from 3 pm until 6 am. Hope no one goes hungry. :)

Still, I hope it sticks and I can't wait to put Lily's little bear suit on and get her outside so flakes drop on her head. I hope it sticks so I can get out with Gabriel and make a little snowman. It's probably going to be a world record for the smallest snowman ever made, but he loves snowmen and he won't care that it's small as long as it's bigger than his playdough snowmen.

There's just something magical about a child seeing his first snow. Snowflakes falling in your hair. Accumulation! The flakes are pretty small right now, but every once in a while, one with substance falls. I look out my window, oh, every ten seconds or so, and there just seems to be more and more and they're falling faster and faster. I'm so excited! I'm a child again!

As for Lily. . .she had another cardiologist appointment on Wednesday. Looking good! The VSD is still there, and still moderate, but it's closing, and the doctor thinks everything is looking good. (Snow's coming down harder!) He asked me when I wanted to come back. So we'll return in three months.

Lily also had an appointment with her pediatrician on Wednesday. He was given a prescript for blood work from the GI, but he wasn't sure why. Neither was I. I asked him what he thought, and he said, In the past, we've not done bloodwork on babies with Trisomy 18. They have Trisomy 18. He was not trying to be heartless when he said this, just honest. But I got it, and it got me thinking. Why does Lily need the bloodwork? We know she has an inflamed liver, but according to the ped, people walk around with elevated enzymes in their livers all the time. We know she has gall bladder sludge. But it's just sludge right now. According to him, she's not in pain from these two things. (Snow's beginning to stick!) So, why should we put her through the pain of bloodwork and IVs and test after test after test? Dave and I are thinking that maybe we're going to take a break from it all and let her be the baby she needs to be. She doesn't need those tests right now.

So, please, if you will, please pray that Lily continues to astound us with how well she's doing, and please pray that our decisions are the right decisions. We have so much to be thankful for--health, generous friends and family, my ability to stay at home. . .the list goes on.

It's a beautiful, white day. I can't wait for Gabriel to wake up from his nap so we can go outside and enjoy the snow! Pictures to follow.

Sweet Dream

The other night, I dreamed that my nana (who passed away a few years ago) was sitting up in bed with a pink nightgown on, holding Lily. Lily was laughing and scooting around like she was having fun playing with her. I got in bed with them and began playing with Lily. While we were playing, she said Ma Ma. I then would say other things to her, and she'd try to repeat them, accurately saying some words and giving the right number of syllables. And we would laugh every time.

Such a happy little dream, but it made me miss my nana dreadfully. I then thought about Lily being in Heaven with her and that put a lump in my throat, but it also made me glad that someone would be up there with her so she wouldn't have to be "alone." We're not there yet, where Lily is gone from our lives, but the possibility stands like a shadow, never far. A form of some reality, waiting.

Gosh, sometimes it seems so far away, though. On Monday, Lily weighed 11' 5". Up from 10' 12" two Wednesdays before. She's into size 2 diapers and size 3 months clothing. She's getting such positive remarks from her therapists--still won't take a bottle, though. She delights in her daddy every time he holds her. She's sleeping a little better and smiling more and fussing less. I'd like to believe she's invincible, though I know in my heart she is not. These may be little things, but they swell my heart, and I celebrate her accomplishments.