Thankful for Team Joella

Today I am thankful for this blog. I am thankful for so many reasons…the ability to constantly brag about my kid, the opportunity to tell my family and friends who live far away what happens in our life, the ability to connect to other families who have kids with EB, the ability to educate those who have never heard about EB, the ability to express what’s on my mind. I love having a blog. I know there is a lot of controversy in having a blog and especially about blogging about your children (who don’t have a choice in the matter). For me it’s a great way to keep a family journal. Often times I’ll look back at old posts and see where we’ve been and how far we’ve come. I read the posts from when Ella was born and find comfort in all the comments of encouragement. It’s easy to forget the details of what happens, so this blog has been a great reminder of those details. In saying that, if I ever get a bit wordy, I apologize. The details are more for me than for you.

Today I am thankful for this blog for a different reason. Remember this post from a few days ago? Well, last night, completely by accident, all of the pictures on our computer got deleted. Yes, all of the pictures of Ella from birth to last month when I last uploaded, they’re all gone.

I know what you’re thinking, “Didn’t you have them backed up?” Yes, we thought we did…but they aren’t there. We were able to retrieve a few from the recycle bin, but we still have nothing from the entire years of 2009 and 2010, and we only have a few from 2007 and 2008. Ella’s first birthday…gone. Her first day of school…gone. All of the adorable videos of her singing…gone.

To say I was devastated would be an understatement. I was a hysterical mess!

But today I am choosing to focus on the positive, and today I am beyond thankful for this blog. If it weren’t for this blog I wouldn’t have posted so many pictures online (the ones to the right). Thankfully, I have many of Ella’s pictures saved to online folders so that you, our loyal blog readers, can see how big she’s getting, how much she’s talking, and how smart she is. Unfortunately I didn’t upload everything online, there were some videos and pictures that I wanted to keep to myself. But I am beyond thankful to have the pictures we do have. I wouldn’t trade them for the world!

Happy (belated) Thanksgiving!

I hope you all had a terrific Thanksgiving. We had a nice, relaxing time. We decided, after a lot of discussion, to just stay at home this year. We’re taking a big trip at Christmas with the Murray clan, so we figured we needed to spend at least one holiday at home just relaxing.

We woke up Thanksgiving morning and watched the parade. It was so fun to watch it with Ella! Last year she tried to sing along with all of the people. This year she just watched the dancers and singers, and anticipated every float that came on the screen. With each float she would yell (and I mean YELL) who it was, then say hello to them over and over again until the next thing came on the screen. So it went something like this, “DORA!!! HI DORA! HI DORA! HI DORA! HI BOOTS! MOMMY, it’s Dora and Boots! HI DORA! HI BOOTS! See ya later Dora! See ya later Boots!” Needless to say, it was hysterical! Joe and I had to much fun watching Ella watch the parade.

We didn’t leave the house until 3:30 when we headed to our friends house for Thanksgiving dinner. Our good friends, the Grubbs, invited us to crash Christy’s Thanksgiving with her family. Christy is from a family of 7 kids, so whenever we get together with them Joe feels like he’s back at home. In fact, one time after spending some time with the Boardman family Joe said, “I love the Boardman’s! If I wasn’t a Murray I would want to be a Boardman.” We had a great time hanging out with the entire family and stuffing our faces.

Black Friday I usually dispatch Joe to get up at 4 am and run to Target or Wal-mart to find something we need. 2 years ago it was a GPS. Last year it was a new TV. This year we couldn’t think of anything that we REALLY needed that was going to be on a terrific sale on Friday, so Joe didn’t have to head out. We just slept in. Of course Friday afternoon, after cabin fever started setting in, Joe ran to Wal-mart to get a folding table. Then cabin fever started setting in for me and Ella, so later that night all three of us went back to Wal-mart to get some deals, then we went over to Target to get some more deals (movies for $3.99!). Friday night we had a leftover Thanksgiving meal with our neighbors.

It was the perfect, relaxing Thanksgiving weekend. Since Joe’s office was closed on Wednesday, we had a 5 day vacation as a family. It was a ton of fun just hanging out together and playing.

I realize I stopped all my thankfulnesses on Wednesday, so here’s my things I’m thankful for from Wednesday through today.

Wednesday: I was thankful for days off work that we get to spend as a family. And I know Ella and Joe are thankful for days off too.

Thursday: I was thankful for delicious food and wonderful friends. I already had a post where I was thankful for friends, both old and new, so this will specifically focus on food. I’m not just thankful for food on Thanksgiving, but that the Lord provides for us and we have plenty of food to eat anytime we want it. We have never had to skip a meal because we didn’t have enough money to buy food. I am able to look in our cabinets and ALWAYS find something for us to eat. That is a blessing! I know that not every family has that luxury.

Friday: I was thankful forleftovers! YUMMY!

Saturday: I was thankful for modern medicine. Saturday I was particularly thankful because I felt terrible, and it’s so nice to be able to pop a couple of pills and feel a whole lot better! But on a much deeper level, I’m thankful because Ella has medical items at her disposal that kids with EB didn’t have 15 years ago. And while there isn’t currently a treatment for EB, I believe in my heart that with the advances in modern medicine, someday (soon) there will be something out there that give Ella the ability to live a “mostly” normal life.

Sunday: Along the same lines as modern medicine, yesterday I was thankful for the health insurance we have. We are so fortunate because our health insurance covers much of what Ella needs. There will always be things that insurance doesn’t deem as medically necessary, but we aren’t forced to choose between paying our mortgage or buying Ella’s bandages. Yes, there are families that have to make those tough decisions. I’d be lying if I said I wasn’t afraid of how the new health reform law is going to affect us, but today I am thankful that we have most of her supplies covered.

Later today I’ll post what I’m thankful for today.

4 more Thankfulnesses

***Update: About 1 hour after I posted this our phone rang and it was Metti. She's back in town and came right over to visit Ella. We're all glad to have her back...and she's glad to be back.

Ok, so I’m obviously slacking off a bit with all this thankfulness stuff. Here are 4 more things I’m thankful for, but I’m just going to jot them down then get to other more exciting things.

Saturday: I was thankful for health insurance! Not that we had to use it on Sat any more than we have to use it any other day, but just knowing that we are able to get Ella what she needs is reason enough to be thankful!

Sunday: I was thankful for modern travel conveniences. Specifically, airplanes. It is so incredible that we can jump on a plane in the morning, and within a few hours we’re across the country visiting family. I love that one night I can be talking on the phone to my parents, and the next night they’re here visiting. Growing up in WY we learned all about the Oregon Trail and the Mormon Trail, so I know just what those people had to go through to travel just a few miles. I am so glad we don’t have to deal with that!

Monday: I was beyond thankful for my bed! In a nutshell, I worked hard all day rearranging and cleaning the kitchen, dining room and living room of our house. By the time I crawled into bed that night I was so thankful for a comfy, warm bed to sleep in.

Today: I am thankful that Ella has been SLEEPING THROUGH THE NIGHT!!! Yes…Oh yes, it finally happened. It actually happened about 2 weeks after I started staying home full time, but I didn’t want to jinx anything by mentioning it on the blog. Sure, she gets up now and then, but it’s not as often as it had been. And when she does wake up I just go in and tell her that I’m here, ask her what’s wrong, and then she turns over and goes back to sleep. Usually she just wants a blanket taken off or put on or something like that. Not nearly as labor intensive as it had been. And she hasn’t gotten up and stayed awake for several hours like she used to. If she wakes up 5 times tonight I’m going to blame all of you! Not really, but it will confirm that I totally jinxed it by posting the good news on the blog.

Not much else has been happening around the Murray house. Preschool continues to go well and Ella looks forward to going each day. She still cries every day when I drop her off, but the teachers tell me that once she gets inside she’s completely fine. And when I pick her up she’s happy as can be, so I figure she gets over it pretty quickly. She talks about the other kids all the time and is very interested in what letter their names start with. I’ll ask her who the weather helper was (because that’s her favorite job) and she’ll say, “It starts with a C…C C C (making the C sound)…Cole.” This is how she refers to every kid in her class. I’m wondering if this will translate into reading sometime soon. And since she loves being the weather helper, the first thing she asks in the morning is what is the weather outside. And when we get in the car after school the first thing she tells me is whether or not she was the weather helper.

We went to our friends house on Sat and the men did some yard work, while us women folk stayed in the house with the kids. I noticed that Ella was actually sort of playing with their 2 girls. She’s not as assertive as they are, but she definitely got in there with them and played with their doll house and their chalk board. We even went outside and Ella and their older daughter played baseball…which made Joe very happy. Ella is usually the 'watch and observe' type, so the fact that she was willing to get in there and play with the other girls was pretty exciting for us. I attribute this step to preschool.

We did have some major respite care issues. In a nutshell, we can’t go more than 60 days without using our respite care benefits. Since Metti has been gone for 2 months we had someone else come in for that time. Well, she showed up for 1 week (3 visits) then never came back…yeah, that was nice. And she didn’t tell us that she wasn’t coming back, she just never showed up. In fact, she didn’t come one Monday, so I called her. She called me back later that day and told me there had been a death in her family and that she wasn’t going to be in that week. Ok, fine. The next Monday she called to let me know that she was going to be 30 minutes late…no problem. Except that she never showed up…and she didn’t come on Tuesday either. The agency called and said she would be out that week for a death in the family but that she would definitely be back on Monday. So Monday rolls around and she’s no where to be found. Yeah, she didn’t come back Tuesday or Thursday either. Unless we got someone in this week we would lose all of our benefits, which would be a disaster! Fortunately Joe called the agency and they sent someone over yesterday, and she promised to come back Wednesday, so I’m crossing my fingers that she’ll be here. In the meantime, we don’t know if Metti’s back or not, so we’re trying to get in touch with her too. Needless to say, this has been a bit stressful.

So that’s a summary of life at the Murray house. Not too exciting, but pleasantly predictable.

Pictures!

To follow up to my post yesterday (which was actually posted this morning), today I am thankful for pictures and videos. I love looking at pictures of family members when they were kids. I love looking at pictures of Joe and me when we were dating. I love looking at pictures of Ella when she was a baby.

When we were in Texas last year my uncle pulled out some old family videos. They were AWESOME! We laughed through every video…especially of the one where my brother was break dancing…yes, break dancing. Hello 80’s! In most of my childhood memories Curby was either break dancing or skateboarding. In this particular video he was break dancing on the front patio of our grandparents house and in the middle of the song our grandfather, Big Daddy, joined him. We died laughing! It was hysterical!

I love watching videos of Ella when she was a baby. Sometimes if I’ve had a bad day I will go back and look at all the pictures and videos from her first year. She was SO cute! These are treasures for me. In fact, I hate to admit it but I don’t have a lot of memories of Ella during her first year. We were in complete survival mode, which means I didn’t take the time to remember things. Sure, there are bits and pieces that I remember really vividly, but not her first year as a whole. So I love looking back on the videos and seeing just how cute she was!

I love looking at old pictures of Joe when he was a little boy! He was so cute. I think it’s hysterical to look at all sorts of pictures of him on dates. Oh the girls he has dated! I love seeing pictures of him with his dad, especially since I never had the privilege of meeting Mr. Murray. I love seeing pictures of the entire family together and trying to decide which sister is which.

I love looking at pictures of family members who I’ve never met. The old timey ones where no one smiles. I love those!

My grandma, Big Mama, also loved pictures. One step inside her house and you knew 2 things. 1) she loved her family, and 2) she proved it by all of the pictures she had hanging everywhere. In their guest house one entire wall was made up of pictures of their 3 kids. In the den in the main house there were pictures on every inch of every wall…and all over the door…and all around the TV. These pictures gave her comfort.

I am SO thankful for pictures and videos!

Digital Camera Awesomeness

I meant to post this last night, but I was tired and fell asleep.

Today I am thankful for the modern technology of digital cameras. Remember the “Olden Days” when we had to take a picture and didn’t immediately know what it looked like? Remember when we had to wait days or weeks to actually see if we closed our eyes in the picture? Ugh!

Remember when 1 hour processing came into existence and we didn’t have to wait for weeks but could have our pictures back within the day? I would always pay the extra money for the hour processing. It was totally worth it!

My first camera was a pink 110 camera given to me by my grandparents, the Bigs (Big Mama and Big Daddy) for Christmas. I think I was maybe in 5^th or 6^th grade, but I can’t really remember. When I was in high school (again, I think) my parents got my brother and I both very nice Olympus cameras. The thing that made this camera cooler than any other camera was that it had a built in remote control! Yes! No more turning on the timer and running to get in the right place. Everyone would just get posed and I would click the remote control and take the picture. It was fabulous! In fact, I still have that camera. I keep it around just in case I ever need a “real” 35mm camera.

The first digital camera I ever owned was given to Joe and me by my bridesmaids. They all pitched in and got us a nice digital camera…cannon I think. Of course I was a complete dork and forgot to pack it for our honeymoon, which meant that any pictures we have from that week were taken by a $6 disposable camera that I grabbed in the grocery store. We used that camera until Ella was about 18 months old. Unfortunately it had seen better days and the pictures were all dark and had weird coloring.

For Christmas when Ella was 18 months old Joe gave me the nice Cannon digital camera that I have now. I love it! I love that I can take pictures and video. I love that if Ella won’t stand still I can just put it on the “sport” setting and snap away until I get one that looks good. And I especially love that I can take hundreds of pictures without worrying If I’ve used up all of my film. The only thing I wish was that I knew how to fully utilize the camera. I feel like I only use about 10% of what it can actually do.