Dancing in the Rain

Wednesday, May 22, 2013

It rained a lot today...and I'm pretty sure for the first time ever in Noah's life he wanted to go play in the rain! My straight laced, non joking kid is starting to live a little on the edge! Of course Richard obliged and out they went. Princess Ellie wasn't too happy about it, she desperately wanted to go play too and wasn't too happy when Mommy said no.

She did spend most of her afternoon today in her princess dress. She got this dress for her birthday in January, and four months later she is finally wearing it. It's hard to remember our lives before January 26th. Some times the doctors or therapists will ask "did she used to" and I can't remember. The OT was working on getting Ellie to take her own shoes off today, and I kept thinking to myself...could she do that before? Richard asked the other night if I thought our lives would ever return to normal...I had to giggle. I have not a clue what normal is anymore. No, our life will never be what it used to be, and honestly I can't say that's a bad thing. I look at all the good that has come out of our "new normal" and I'm proud of us. Sure I'd love a day back in Orange, VA heading to work, taking Noah with me, getting texts from Kelly with what Ellie has done to get herself in time out for the 5th time that day. Coming home to Ellie's "Hi Mommy!", letting our crazy dogs out and figuring out what to make for dinner (ok so I don't miss that part so much). Waiting for Richard to come home to give me some type of relief! I have no doubt will have those days again, just with a whole new out look on life!

Ellie made it though the first meds of round 3 of chemo and I made it through my first inpatient visit. I was pretty scared...okay not scared,just afraid I wouldn't do something right. When even the registration ladies are telling you how amazing your husband is, you start to wonder if you will measure up. I think I did pretty good!

I am very thankful though for all the movies to chose from, even though she wanted to watch the same ones over and over! And when Mommy got boring, reinforcements would show up!

Talk about the "new normal". Noah would come in, kick his shoes off and jump in bed with Ellie (maybe he was just excited about the movies too).

She handled chemo like the pro she is. She continues her refusal to talk to any hospital members, but no worries, Noah talks to them all for her....everyone knows when Noah's birthday is! It was nice to see her finally open with her PT and OT. As she went running down the hall with her PT, IV pole rolling behind her, I couldn't help but think back to the first walk down the hallway in the PICU at UVA after her brain surgery, her Daddy holding her hands, the PT holding her hips and only going a few feet...now she is running the length of the hospital. Thank you Lord for all the amazing people who have helped her get this far!

Ellie had a follow up appointment at the cardiologist because her EKG showed some left ventricular dysfunction (LVD). The night before her appointment, Richard wanted to pray specifically for her appointment, and we did. The next morning he wanted to pray with Ellie and I again before they left. I started to wonder if he was really stressing this appointment, I wasn't. So after they left for the appointment, I started to google LVD and then I started to get a little worried...I should really know by now to not google things...but I'm hard headed. Maybe Richard had done the same thing and that's why he wanted to pray so much for this appointment...or maybe I have become I have become a little too relaxed in my prayer life. I think I've been taking for granted all the blessings the Lord has put in our lives...I'm doing good at praising him, but maybe forgetting to focus on specific things or just thinking well "God's got it"...no need to pray about it. Anyway, Ellie's appointment found nothing to be concerned with, the cardiologist said he would barely categorize it as mild, they will continue to watch it and follow up with her after round 4.

Noah is loving the four boys that live above us! He is loving the outside! He is also missing home, he has said a few times that he wishes we could all go back home together. I can't blame him, I'd love it too! But we couldn't be in a better place at this moment. I truly feel that having our whole family together is helping Ellie so much. We still struggle with getting her to eat some days. Many people have recommended certain diets to us, I would love if they could recommend how to get her to eat period. Some nights it's battle...and how hard do you fight? I feel like the wicked witch some nights, and I can't always tell if she feels yucky or she's just being stubborn...or she has that fear of getting sick. My girl is taking medicines that I will never even begin to know how they make her feel and now I'm trying to force her to eat something...anything. She's so young to even begin to try to express what she wants to eat or how she's feeling, or to understand the importance of her eating and drinking. Foods she normally loves don't work and what works today, doesn't always work the next day. Sibling encouragement and song and dance sometimes work and sometimes she could care less what we bribe her with or how loud we cheer her on. Then you have Noah who clears his plate and wants you to sing for him...oh how entertaining we must be to watch!

Got totally off track to the title of my blog...there's a common theme to our lives...we dance. I grew up dancing, I love music and I love to dance. No matter what is going on in this family, we are always singing and dancing, even if its in the "rain". We can find a song for any occasion, or make one up...Richard is a pro at made up songs for the kids. Ellie has inherited that love of song and dance. Not one hour after being unhooked from her chemo drug she was in the hallway dancing...well we all were, but if she wasn't there Richard and I would have just looked crazy. Her spirit is unbreakable. After all she has been through she continues to dance, we continue to dance...we continue to sing and we continue to praise Him. We are blessed.