Just us girls

Well, Joe’s down in Roanoke getting in some last minute studying. We decided that it was best for him to head down a few days early so that he could get his final studying done with a full nights sleep and without a 3 year old vying for his attention. Saturday morning we went out to breakfast as a family, then we came home and Joe packed up all of his gear. Of course I think of things that he doesn’t have time to think about, so I went to the grocery store last week and stocked up on all sorts of snacks and water for him to take. I could just picture Joe sitting in his hotel room studying away, and not eating all day. I know, I know…anyone who knows Joe knows that the guy wouldn’t skip a meal, but I felt like it was my duty as a wife to ensure that he had snacks to help tide him over. And I knew that when he was still up studying at midnight, there wouldn’t be restaurants open to feed him. Snacks were necessary. Besides, it's not every day that a 35 year old man has an excuse to eat Gushers, Beef Jerkey, granola bars, etc. Yes, I included fresh fruit too.

As difficult as it is to not have Joe around (how in the heck do single parents do it?), we knew it was the right decision for him to take the weekend to study. Of course, Ella was up every 2 hours on Sat night, and while it was hard on me to deal with her alone, I was so thankful that Joe was getting a good sleep and would be well rested to study on Sunday. He has said that being in the hotel has been really good for studying. He has a desk where he can study and it’s quiet without any distractions. And there isn’t a sweet 3 year old coming to his office door and saying, "Knock, knock daddy!"

Tuesday and Wednesday Joe takes the bar. Please keep him in your prayers. I’m not going ask you to pray that he passes (although we both hope that he does)…I’m going to ask you to pray that he does his best and feels good about it when it’s over. Pray that God keeps him calm and relaxed and that he is able to recall all of the things he has learned over the past 4 years. And while you’re at it, if you could pray for all of his friends who are also taking the bar this week. I can’t name every one of them, but God knows who they are.

Ella and I have had a low-key weekend. It has been way too hot to get her outside (104 on Saturday and 106 on Sunday), so we have spent most of our time hanging out in the house. Saturday afternoon we did go swimming in our little pool in the backyard. The water felt so good! We both just sat in the water and played for about 30 minutes. Sunday morning we made cookies for breakfast...yummy! In the afternoon we had company come by, which was great for me! Leslie stopped by with her sweet 6 month old little boy (ADORABLE!!! His huge, gummy smile and laugh almost did me in!). It was past Ella’s naptime, so she just walked into the kitchen and laid down on the floor and fell asleep. I guess the cool floor felt good, but sleeping on a hardwood floor isn’t comfortable, so after about 30 minutes I took her up to her bed. We spent the rest of the afternoon just hanging out at home, then last night (after the rain had cooled everything off) we went to the grocery store. Not too exciting around our house.

And yes, Ella has been asking for Joe. I just tell her that daddy is studying. She accepts it, but I know she will be the happiest 3 year old on the planet on Thursday when Joe gets home. I’ll be happy too!

P.S. What do you think of the new blog layout? I love tye-dye...always have, so as soon as I saw this I knew I had to have it!

EB is in the news!

Well, the hearing was a complete success! Ella and I arrived around 9:30 and the hearing started at 10. Several other EB families from VA and MD (and even one from NJ) were there, so it was great connecting with them. Many of these people I have had the privilege of talking to and emailing over the past 3 years, but have not had the chance to meet in person. I was so happy to connect with them! We had people with EB, moms, dads, grandmas, grandpas, aunts, brothers, and even Ella’s dermatologist came to the event (he treats most of the EB kids in the area)! The turnout was incredible! The room was completely packed with standing room only. In fact, in a meeting later that afternoon a woman told us that she had tried to attend the hearing but wasn’t able to get in the door.

Alex did a great job of representing EB families. You can read his testimony here. Ella sat through most of the hearing, but after about 1 hour and 45 minutes she decided it was time to go. We spent the last 30 minutes of the hearing in the hallway. We did get our picture taken for ABC, which you can see in this article. There's also a video that includes shots of Ella and me, Jackson (Alex's son), Megan (who I blogged about here) and her brother, and other EB kids. What great awareness for EB! I am so honored that Ella and I were able to participate in this hearing.

After the hearing Ella and I made a stop by my old office. We got to see many of my former coworkers and the Senator. What a wonderful office! I miss working with them! They, of course, loved seeing Ella. One of the staff assistants gave her a doughnut, so Ella spent our time sitting in a chair chowing down. One minute I looked over and she had taken a couple of bites. The next minute I looked over and she was over half done. It was lunch time and that girl was hungry!

By the time we got home Ella was on the verge of a meltdown. It had been a long and eventful day and she was in need of a nap. The day was perfect and the hearing couldn’t have gone better. I continue to be amazed at these incredible families who deal with EB every day, and I am honored to call them my friends.

Big EB news

Wednesday Morning at 10 am, the Senate Health, Education, Labor and Pensions Committee will be holding a hearing titled "Treating Rare and Neglected Pediatric Diseases: Promoting the Development of New Treatments and Cures." The EB community is extremely fortunate to be personally represented at this hearing. The father of a boy with RDEB (what Ella has) will be testifying before the Committee and sharing details of their life with EB. This is an incredible opportunity! EB will be the only disease specifically represented at this hearing.

Full Committee Hearing - Treating Rare and Neglected Pediatric Diseases: Promoting the Development of New Treatments and Cures

Committee: Senate Committee on Health, Education, Labor, and Pensions

Date: Wednesday, July 21 2010, 10:00 AM

Place: SD-430


I know that most people don't live in the DC area and won't be able to attend the hearing, but you can watch it via webcast at: http://help.senate.gov/hearings/hearing/?id=d132692d-5056-9502-5da9-23c77808a20f

It should be available one the webiste for a few days after the hearing, so if you're working during the day you'll be able to watch it at night.

Like I said, this is a great opportunity to raise awareness for EB and hopefully advance research for the future. Ella and I will be there, along with several other EB families. I'll be sure to fill you in on the details.

I'm not strong.

Since Ella’s birth, one of the most difficult things for me to hear are the praises and compliments on what good parents Joe and I are. I know it sounds weird. Everyone wants to be a good parent, right? Of course they do, and Joe and I want to be good parents. But whenever anyone comments on how strong we are, or how wonderful we are to take such good care of Ella, I get really uncomfortable and honestly, a bit annoyed. I’m speaking mainly for myself, although I’m sure Joe would say the same thing.

Several weeks ago I came across this quote and it summed up everything I have thought since the day Ella was born and people started talking about our strength.

“You never know how strong you are until being strong is the only choice you have.”

When people tell us how “amazing” we are and say that they just couldn’t handle what we go through, I usually ask one question. “If tomorrow the doctor called you and said, ‘I’m sorry to tell you, but your baby has cancer.’ What would you do?” They usually shrug and say that they don’t know. I’ll tell you what you would do…you’d start fighting. And you’d wake up every morning and put one foot in front of the other, and you’d spend your day fighting. And before bed each night you’d get down on your knees and pray for a miracle and for the strength to wake up the next morning to continue the fight.

Here’s the reality, we aren’t strong. We’re not any stronger than anyone reading this blog. We have just been put in a situation where we have to be strong. We didn’t have a choice. God didn’t come to us before we got pregnant and say, “Hey, I know you and Joe are busy people, but I wondered if it would be ok with you if I gave you a daughter with a very rare skin disease. It’s going to be a lot of work and it’s going to put you both through struggles like you never imagined, so I just wanted to run it by you before this baby is born. Are you ok with that?” No one sees our life behind closed doors. You don't see the tears of defeat when we've had a terrible bandage change or Ella screamed through her entire bath because the water stings so bad. You don't hear the sobs of sorrow when all you want is for your kid to get better, but instead it seems as though she's getting worse. You aren't there when I look at Joe and say, "I need a break" and I escape to the mall for a couple of hours. If others see any strength in us, it’s only because Christ has provided the strength. Without our Heavenly Father carrying us through the past 3 years, we wouldn’t have made it…and that’s the truth.

Happy 4th of July!

I hope you all had a wonderful 4th of July. The Murray’s stuck close to home to celebrate our Nation’s birthday. The weekend started off with me working a half day on Friday…what can be better than that? Saturday afternoon we had the privilege to celebrate the wedding of our good friend Darla to her main squeeze, Matt. It was a beautiful wedding and we were so honored to be there to celebrate with them.

Sunday (after a great morning at church…where Ella was the only little girl not dressed in red, white and blue…yeah, I felt like a bad mom), Grammy Janet arrived! Ella has been looking forward to this day all week! She loves having Grammy Janet come visit and if you ask her why the first thing she’ll tell you is that Grammy brings presents. Well, Grammy didn’t disappoint and showed up with a pink Princess chair! Very exciting for a 3 year old little girl! Sunday evening we had our good friend, Beck, and her sister, brother-in-law and two nieces over for dinner. It wasn’t anything exciting, just the standard burgers and hot dogs, but it was so great to have them over to celebrate. And Joe got to connect with another Steelers fan, so that made his night.

Monday was a boring day…I hate to disappoint you. I had the day off but Joe went into work to wrap some things up and get some studying done, so Grammy, Ella and I just stayed at home and played. It’s super hot around here, so the basement has been our haven.

That’s about it for our weekend. Not too exciting, but relaxing and just what we needed. And yes, Joe did read the Declaration of Independence to Ella as he always does, although this year it had to be done in increments since she’s not so eager to sit through a book that doesn’t have pictures.