Our Little Butterfly

My dear little girl,

You truly are the wiry caterpillar who has broken through her cocoon and emerged as the beautiful butterfly. You spread your wings more and more and touch so many people who know you. You are God inspiring. We have been blessed beyond measure to have yet another year with you.

Happy Birthday, my sweet little butterfly!

Love,

Mommy

Another Year

Happy birthday, Lily Grace!

A Busy Summer

It seems as if little Miss Lily is going to have a busy summer this year! She will be attending a summer camp for special needs children. I'm so excited for her, but I think it's going to be hard letting her go. I've probably not been away from Lily (except for when Soleil was born) for more than five hours. And each time, she's been with either my mom or Dave's mom, or Rani or Autumn (or Mrs. Reeves, a former co-worker of mine). All good hands, for sure.

For summer camp, I'll be releasing her into the hands of a stranger. I'm not so worried about that as I am wondering Will Lily know she's not at home? Will she miss us and wonder what we're doing without her? All of Lily's therapists have recommended this place; otherwise, I would not send her to this camp.

It's like a dream come true, though. Lily will receive some type of therapy every day for five weeks! Plus, she'll get to go swimming and to the waterpark, and she'll have equestrian therapy and dance/movement classes, as well as music therapy. She'll also be exposed to equipment we don't have here at home.

Oh, how I'll miss her, though! I guess it's a good start because when she turns three, she'll be eligible for public school. We're actually hoping she'll be able to attend the school that is putting on the summer camp.

Maybe I'll try to volunteer at the camp a little throughout her time there. Of course, with Soleil nursing (and being suddenly stubborn about taking a bottle), I won't be able to stay there the entire six hours, but being there a little may cushion the blow.

Regardless of how difficult it will be for me to let go of her for those few hours, in my heart, I know it will be good for Lily. I guess, in some strange way, it will be good for me, too.

A Wonderful Weekend

First of all, I would like to thank those of you who commented or emailed me regarding Lily. Your care and concerns are so appreciated!

We got the results of the abdomen scan, and Lily is Wilms tumors free! Unfortunately, it looks as if the sludge that was in her gall bladder has turned into gall stones. A referral to the GI is in place, and hopefully, we'll just be able to leave them alone, that they won't clog any ducts and have to be removed.

This weekend was such a contrast to last weekend! Dave and I have been considering going up to Chicago for the SOFT conference, but it turns out that his school will change to a year-round schedule next year, and school will begin the week before the conference. We've decided, instead, to use the money we were putting aside for the conference to go to birthday parties of children with Trisomy 18. Unfortunately, we can't go to all of them, and we're limiting our distance to a certain radius in the southeast, but still, it's the best we can do to meet with other families.

This weekend, we went to one of those birthday parties. Rebekah, who turned two last week, also lives in South Carolina. (You can read more about Rebekah at her blog. Her mom is a storehouse of information!) We didn't just see Rebekah, though. We saw Joey (2 in June) (Her blog), Dawson (5) (He has a blog, too!), and Kaylen (10), as well! It was amazing to be in the presence of that many children with T-18 and their families. So many times, I feel as though there's this disconnect between me and other people, but this weekend wasn't like that. There was this immediate connection, and it was so refreshing to hear stories and learn more about these children who have defied that horrid death sentence "incompatible with life." (I mean, hey! Kaylen is 10 years old!) Although I've heard from other moms about their child having vomiting episodes, I found out that these other children go through it too--things like that! In the flesh!

It's finding out things such as this that makes me feel less alone on this journey.

A Scary Weekend

There are days when the world of Trisomy 18 weighs very heavily on my shoulders and I wonder how much more of this I can take. This week was full of those days. I was sad and worried, and that is not a good concoction.

I guess it's been in the making. Who am I fooling? It's always in the making. But what took my heart down a road it always wonders if it can handle was reading about angel Brianna's birthday. This precious little girl--oh how I have soaked a tissue over her. I went back and skimmed over some of her mother's blog posts, taking myself back to a time when this was all so new to me. I came across Brenda's post when she was told by Brianna's doctor that she probably had two weeks left with her daughter. The flood gates opened, and my heart broke again.

This breaking. Sure, it's for Brenda and Brianna, but I'd be lying if I said it wasn't for me, too. Please forgive my selfishness, but I took myself to that place where all I had was two weeks. I panicked. I mean, how do you cram a lifetime into those two weeks? Can you give all the love you planned to give? Can you lasso the clock and corral it to slow its pace? Can you create memories so deep that you will always remember a smell, a laugh, a smile?

All of this went through my mind. Then I argued with God. I can't do this. I am not strong enough. And every time these thoughts would sneak into my mind, I would, once again, hear Trust Me.

Then Lily got sick. On Thursday, I took her to the doctor, expecting a UTI. I felt confident that's what it was. She was whining a little, vomiting again, and had a strong-smelling diaper. They checked her urine, but we had to wait until Saturday for the results. Saturday came, and no UTI.

I knew something was wrong. Lily just wasn't herself. She's always smiling and rolling around and making happy noises. Here she was, frowning, very lethargic, and making this whining/moaning sound. Plus, her stool consistency had changed and had a very acidic smell to it.

I couldn't help thinking back to Brianna, and I found myself worrying. Is this the moment when everything comes crashing down? Is this when something inside of Lily begins failing? With Trisomy 18, you just never know.

This worrying made me even sadder. That two-week story kept playing in my head, and it was all I could do not to cry at any given moment.

By Monday morning, Lily seemed worse. More moaning than whining, lots of sleeping, no smiling. I texted our prayer warrior, Mama Ray, and called the doctor for another appointment. Basically, all she could come up with was a stomach virus, but she put in a request for an abdominal scan, which Lily was due for anyway, to check for Wilm's tumors. By the end of the appointment, though, it seemed as if Lily was feeling a little better, but I still didn't want to let my guard down.

But what about these Wilm's tumors? It happens that one of the symptoms of Wilm's tumors is an increased growth on one side of the body (plus general discomfort and malaise, loss of appetite, and vomiting, to name a few). It just so happens that Lily's right leg is a little longer than her left and a little thicker around than her right. Are these symptoms a sign of something we're praying Lily never has to deal with?

Her abdominal scan was today. Hopefully we'll hear back from the doctor tomorrow about the results. Being that tomorrow is Friday, I hope I won't have to wait the weekend, but if I do, Lily sees her nephrologist on Tuesday, and I'll definitely talk to him about this.

I'm happy to say, though, that Lily is back to her old self--smiling, rolling around, and making happy noises. By Monday night, she was all better.

And Mama Ray--you must be SOME prayer warrior! Thank you for your willingness to jump right on it!

A Healthier Me

Dave and I recently joined a CSA (Community Supported Agriculture). This is, basically, when you pay a local farmer in advance for a season's worth of his (or her) fruits and vegetables--in our case, they are mostly organic. You get them fresh from the farm, which from what I've read, makes them healthier to eat and tastier, too.

A co-worker of Dave's picked up our first week's order, and when I reached into the bag, I pulled out a bunch of carrots. The bunch on the right is what came from our CSA. Not so pretty, huh?


What you see on the left is what we bought a few weeks ago from the grocery store. Cleaner, bigger, and more of the carrot shape that I expected.

At first, I thought, Oh, these look gross. And I kind of just wanted to throw them away. Then I thought about it and remembered that the CSA website said the vegetables might look more dirty and that this isn't a big farm we're dealing with. And I remembered that these are supposed to be healthier than what we buy in the grocery store. My what we've been conditioned to accept because if I were ONLY dealing with looks, the one of the left is the one I would choose.

Thinking about these carrots and my reaction, I started thinking about Lily and other children with chromosomal disorders. We are so conditioned to wanting the perfect child. But it is through Lily's imperfections that I have been made a better person--stronger in my character, stronger in my faith, more compassionate, etc. She has made my soul healthier because I chose to take that risk and look deeper than the surface level of her disorder.

All of this seems so selfish to me sometimes, but Lily has reached out to others and she is truly one of the happiest little girls I know. She is sweet and determined, and she LOVES life! I cannot fathom someone trying to take that away from her.

You're Invited

Our Little Butterfly Is Turning Two!

If you happen to be in the Augusta area. . .

April 30, 2011
12:00 pm - 2:00 pm
email at southerngirl72j@comcast.net for location

Bring a blanket or chair and a picnic lunch, and join us for music with Chris Ndeti and her band, Mama Says. We'll provide drinks and cake. In lieu of a gift for Lily, please consider bringing a preemie outfit to be donated to the University Hospital NICU, where Lily stayed when she was born.

In case of rain. . .please stay tuned for details.

Please RSVP at southerngirl72j@comcast.net by April 25.

We look forward to sharing this special day with our special friends.