Saturday, August 29, 2009

Update

LG has another cold. She had one about two weeks ago along with Gabriel. Gabriel got over his a good day or two faster than Lily. I wonder if that's because he's older or if this is what we're going to see thanks to T-18. Now she's sick again. She's run a fever with this one, but the doctor says it's just a cold. So we're suctioning her nose, running the humidifier, and keeping her elevated in hopes that this won't go down into her lungs.

We kept both Lily and Gabriel out of daycare because of this, but with two older sisters in school and two educators for parents, germs are everywhere. Would it be rude of me to tell my little students not to hug me? Just kidding. But I won't hesitate if I hear sniffles.

So every once in a while, I read where a T-18 mom gets frustrated with stupid things people say. I have to admit that I've heard more than my share of she's so tiny and was she premature? that I just about want to be VERY up front and honest with the people who make those comments. I mean, really, this might be the best way to increase awareness. I say this because the other day, I was confronted with one of those she-needs-to-put-her-foot-in-her-mouth situations. Now before I tell this story, do know that I laughed about it to myself and to Rani. But there was a small part of me that was horrified. Here's what happened.

Rani and I were in her school's bookstore. The woman behind the counter, first, called me grandma when I was holding Lily. Grandma!?!?! I quickly let her know that I was the mother. Now, this was a total shock because we usually get asked if we're sisters. (I guess it's not uncommon to see young women like Rani with children at this school.) The lady kept talking and cooing and asking about Lily. How old is she? Almost 4 months. What's her name? Lily. I had a dog named Lily once. She died in my arms. If only, IF ONLY, this woman had known what her comment meant to me. But she didn't know, and that's what I have to keep reminding myself of when I come across people who say things that they don't realize has a way of. . .um, hurting. . .sometimes. When I left the bookstore, I laughed. I'd like to say that I laughed because I have a wonderful sense of humor and I can easily brush things off my shoulder, but maybe this time I laughed to keep some of the fear that so easily wants to grip my heart and rip it to shreds from creeping in.

Saturday, August 22, 2009

Lily's Song--"Consider Lily"

I think there were some people who were unable to hear Lily's song, so I created a slideshow with the song embedded. If you happen to know how I can put this over to the side where I originally had it, please let me know. I've been working on this for 30 minutes. There has to be an easier way. Anyway, the song is called "Consider Lily," and it was written by Michael Ray and Ilhwa Gallo of Eleventh Hour. I hope you enjoy!


video

Thursday, August 20, 2009

Back at work

I have decided to go back to work. It has not been an easy decision, and I'm still not 100% sure that it's been the right decision, but for the most part, I'm at peace with it.
Call me crazy, but we hired a young girl who has no nursing or education experience. Actually, she's doing a great job, and I commend her for being willing to take this position. She's watching both Lily and Gabriel, and that takes a lot of energy. Good thing she's young! But even more so, I commend her because she was willing to take this position knowing Lily's condition. Dave and I were very honest with her from the beginning. We told her of Lily's fragility and even warned her that even though Lily is doing very well right now, that may not always be the case.
I think we've made the right decision for a number of reasons. (1) This keeps Gabriel out of daycare and away from the germ-fest going on there. Besides the fact that he goes to church nursery, this should help keep A LOT of germs at bay. (2) Feeding Lily every three hours (remember, she won't take a bottle) is exhausting. I've been given permission to come home and feed her, so I'm very fortunate to have such an understanding boss. But there's more. I'll probably regret this feeling later, but I was beginning to feel as if I was dragging a ball and chain. Sure, I still feed her every three hours, but I get that break from the kids by being at work. Sadly, it's work that gives me that break. (3) Autumn is a senior this year. By not working, our budget would be VERY tight. I don't think it would be fair to her to keep certain senior privileges away from her. She's a good kid, and I think she'd be a good sport about it, but none of this is her fault, and I'd like for this year to be special for her. (4) Dave and I have a great relationship, but even great relationships can be stretch, especially when stress over money looms over you. I'd like to avoid that at all costs!
There are a few reasons I think I'm making the wrong decisions. (1) The obvious. I want to spend as much time with Lily as possible. (And I think she wants to spend as much time with me. She's definitely a mommy's girl right now.) (2) We've got the extra stress of trying to sell our house. It's especially hard when I've been at work all day long and I get a text asking if they can show the house at 4:30. Rushing home to straighten things for a showing is worse than doing "The Saw" in Pilates! (I hate "The Saw" in Pilates!) (3) When I'm doing something, I like to finish my task before I stop what I'm doing. I can't necessarily do that. Every three hours, I'm having to stop what I'm doing so I can feed Lily. I guess that would happen even if I were at home, but the beginning of the school year brings me a lot of work, and this year, there are lots of interruptions.
But I come home, and I'm so glad to see both Lily and Gabriel. I've missed them throughout the day, and it's such a fresh feeling, one that I don't really get when I've been at home all day long. They know I love them, and that gives me a lot of comfort.

Thursday, August 13, 2009

Lily's Song "Consider Lily"

As I said in yesterday's post, Dave and I have some truly amazing friends. Where do I start? Dave's best friend is Mike, but we'll get to him in a minute. Mike's mom's name is Lorraine. I think I've known Lorraine about as long as I've known Mike, and I'm so thankful that she, too, has become my friend. We call her Momma Ray. She's the one who led our Prayer in the Park gathering before Lily was born, and if you look back to that time, you'll see that she's also the one who wrote the beautiful prayer for Lily. She's been amazingly instrumental in getting others to pray for Lily and our family.

Rewind to a month or so ago. Momma Ray visited us and brought Lily a gift but told us that she had another gift for her. It just wasn't ready.

Fast forward to last Friday. It was one of those days when frustration dominated every nerve ending. I couldn't help worrying over going back to work or not and how we were going to make either one happen. Too many things just kept going the way I didn't want them to go. I was at the point where I had to make a phone call about relief for child care (having someone watch Lily and Gabriel here at home is going to cost us a little more than what it would cost to put THREE children in daycare), and I just kept thinking if this woman answers the phone, I'm going to bust out crying. She didn't answer the phone. Still, it was one of those days.

When I went out to the mailbox, there it was--the package that Momma Ray had told me she was sending. How can I convey the perfect timing of this manila envelope? In it was a folder with a piece of paper and a cd. Here's what was written on the piece of paper:

"Consider Lily"
commissioned by Lorraine to honor the life of
Lily Grace
written and performed by Michael Ray and Ilhwa Gallo
Inspired by Matthew 6:28-29
"Consider the lilies of the field, how they grow; they toil not, neither do they spin; And yet I say to you, That even Solomon in all his glory was not arrayed like one of these."

Following that was the lyrics. I put the cd in and heard what you will hear if you click on the little arrow in the black box to the right of this page and cried. This was a much-needed blessing to such a frustration of a day. Perfect timing.

When I called Momma Ray to thank her, I found out that this has been in the making since before Lily was born. You see, she read the blog where I struggled with creating memories of Lily and decided to commission this song. How thoughtful! I told you I had great friends!

To add to that, I have to tell you about Mike. When I called him to thank him, he told me that this is mine and Dave's song, we can do whatever we want with it. Wow! I asked him if he minded if I put it on my blog, and of course, he said no, but that this copy was only a rough draft. [By the way, his band's name is Eleventh Hour and they're coming out with a cd soon!] What was mind boggling to me was that he then said That's funny. I was going to ask you if you minded if we played it when we performed. What! To this day, I still can't imagine why he would even ask me that. Such humility in giving such a gift. [And I hear that the song will probably be on their second cd!]

But I've been thinking about this song. I keep going back to the line Consider this lily of the field. How many times have I, in my prayers, taken this child and lifted her up to God and basically asked him to consider her, this lily? God, I'm just putting her in Your hands. Consider her. Please.

So now, I extend this gift to you. If you are a mother of a child with T-18 or some other fragile condition, if you are praying to see your little one, even if for just a little while, please, use this song as your prayer for your own lily of the field.

Wednesday, August 12, 2009

It's been a while

I know it's been a while since I've posted, but I've started back at work and life is quite hectic right now. Our house is still on the market, and we run around like chickens with their heads cut off to get the house ready for a showing. Why is it that Lily gets hungry every time I'm in the middle of cleaning? Our camera batteries have died and there's no telling where the good lithium batteries Dave's mom gave us might be, thanks to storage, so there aren't any pictures or video of Lily to share. (I know, I could go get more batteries, but I never think about it.) But the biggie is that I'm just too tired most of the time. Lily is still eating every three hours, including at night, so I'm getting very little sleep. Couple that with waking up early for work, and you have a barely-functioning mommy. Ah, the joys. . .
But there are joys! I look at Lily and just shake my head at this little girl. It seems that everything the medical community says she's going to do or not going to do encourages her to do just the opposite. That's my rebellious little girl--taking after her mommy.
Lily does not suffer from constipation, she's over three months old, she's smiling, she's rolling over from tummy to back, and I swear if she'd just move her arm out of the way, she'd be able to go from back to tummy. She's growing (surpassing 8 pounds now) and nursing and amazing people everyday. And the doctor is not worried about her heart anymore. I'm baffled and don't understand how we could be so fortunate, but I also realize that it's not for us to understand. So, instead, I just lift up a lot of thank you's.
Lily has suffered from a cold already. I think she got it from Gabriel and his constant kisses. She was pretty stuffy, and Dave and I worried over whether to take her to the doctor or not, but I think she's now on the better side of it. She's been a little hoarse, too. Poor thing. But hopefully she'll build up a little resistance to fight off later bugs that may come her way.
I have something to share with you, and I really, REALLY can't wait to share it, but I've got to figure out how. I hope you like it as much as I do. Dave and I truly have some amazing and talented and giving friends.
Good night.