Monday, January 4, 2010

Happy New Year!

I hope your 2010 is off to a great start. We’re doing well so far. Ella has decided to start off the year by going back to being a Daddy’s girl. Everything I try to do she says, “No, Daddy do it!” Whether I’m trying to change her diaper, give her ice cream, brush her teeth, no matter what it is she wants daddy to do it. In fact, yesterday she was in her high chair calling for something and when I said, “What do you need, sweet girl.” She said, “I need daddy.” Let’s recap, I carried you for 40 weeks (that’s 10 months people, not the 9 months that they advertise), I have a scar from the c-section that brought you into this world, I provided your nourishment for nearly 8 whole months, I have the stomach that will never again be the same because you and your cuteness stretched it all out…yet, you want daddy? Whatever.

We’re officially old and didn’t do much for New Years Eve. We went to our neighbors house for dinner (their daughter is almost 2) and came home around 9:30. Then we laid in bed and watched the ball drop. The second the clock hit midnight I gave Joe a kiss, turned over and went to bed. How’s that for exciting. The interesting thing about getting older is that even though I know our night sounds lame, I wouldn’t have it any other way. It no longer bothers me when we don’t have exciting plans for New Years. In fact, I probably have more fun just hanging out with Joe and Ella.

On another note, I have started off this year on the sad side. The last 2 weeks of December we lost 3 precious EB kids. 2 were babies and one was 6 years old. My heart breaks just thinking about them. One of them was from right around DC and had just had surgery at Children’s Hospital, where Ella spent her first month of life. The death of this baby was a hard one for me. Maybe it’s because she was the third in such a short period of time. Maybe it’s because she and Ella had a lot in common from Children’s Hospital. Maybe it’s because we had already made plans to connect with her and her family this month. Who knows, but the second I heard about her death I burst into tears.

It sounds harsh, but I rarely cry with EB deaths. They are still hard emotionally, but I think when you have a child that lives with such a serious disease, you constantly feel like death is right around the corner. And whereas death in itself is difficult, there is also something really peaceful about it…especially for a child who has lived with a lot of pain. Not a day passes that I don’t think about death. Don’t misunderstand me…I don’t WORRY about death…I don’t FEAR death…I don’t DWELL on death, but I think about it. It’s always there, in the back of my mind. I wonder if Ella will beat the odds and live to her 30’s. I wonder if she’ll be one of the extremely rare cases that lives into her 40’s or 50’s. I wonder if there will be a cure developed that will give us the chance to no longer stare death in the face. I panic with every fever. If she has a day where she’s just not acting like herself, I won’t let her out of my sight. When Ella was an infant I would check her temperature 15-20 times a day (no exaggeration). If her temp went up 1 degree I would get on my knees and pray that she didn’t have an infection. I don’t check her temperature that often anymore, but I know just where I need to kiss to get the proper reading on whether or not she has a fever. And with one kiss I know if I need to start worrying.

This sounds like a terrible way to live, but it’s really not. It’s our reality, and we have accepted that. And in some ways, I feel lucky…like we have been given a gift. We take NOTHING for granted. My heart holds close every new discovery, every new word, every new morning where I get to see that sweet face and kiss those precious cheeks, and every new night when I get to lay her in bed. I haven’t thrown out or given away one piece of her clothing. I’ve saved every sock, every stained onesie, every mitten. It’s all in boxes in the attic because I don’t want to ever forget one moment of her life.

I don’t mean to sound depressing, but this has all really come into perspective with the passing of these precious kids. It’s a reminder that life is short and we can’t take one second for granted. They remind me to get frustrated less and cuddle more.

Ok, enough sad stuff. Go back to your lives. I’m going to go home and give Ella a big kiss. And then we’re going to play tea party.


Emily said...

That was a very touching entry, you guys. Your sweet girl is lucky to have such loving parents. And I know you are equally lucky to have precious Ella as your own!

Mommy said...

Very well said.

Anonymous said...

I look forwardto every blog and picture that you post of Ella. There is such beauty in your story.
Your wisdom and insight touches me in places I can't even describe.
Thank you for being so bold, and honest about your journey. I too pray that they will find a cure for Ella and all EB kids.
Bless you today as you have blessed me!
Laurie Ploude

Lily Of The Valley said...

That was beautiful. Warm wishes to you and your family. When you have love you have everything.