Our sweet baby girl was born with a rare skin disease called Epidermolysis Bullosa. On the day she was born our lives changed forever. Through her life God has shown us his power, comfort and healing hand. We are blessed to be Ella's parents and can't wait to see what God has in store for her life.
Thursday, January 28, 2010
Tears of pride
Last May we went to Charlottesville to watch my brother during his hooding ceremony (unfortunately my sister-in-laws was at the same time so we weren’t able to see hers). Once again, I cried almost the whole time. When they called MY BROTHERs name and he walked across that stage and they put his PhD hood on him, I was so proud. He had worked his tail off, been a husband and father, and now he was receiving his reward.
This week Joe got an email saying that it was time to order his cap and gown. I decided to visit the website and see what the invitations looked like. The second the window opened I burst into tears. I can hardly believe that we made it…yes, WE. Joe did most of the work and is getting the diploma, but this was definitely a family effort. And not just the family under our roof. This was accomplished through the dedication and support of our parents, our siblings and our friends. We couldn’t have done it without you.
Joe had the option of ordering everything online, but I made him go place the order in person. I didn’t want to take any risk in ordering the wrong size robe or hat, or the order getting lost in cyber space somewhere. So Wednesday morning he made one of his last trips to Catholic University to place his cap and gown order. Wow. I know that I’ll cry again when I see him in it. I won’t be able to help myself.
Tuesday, January 26, 2010
3 Weeks
Last night, for the first time in 3 weeks (and that isn’t an exaggeration) I changed a poopy diaper. Metti had just left and Joe wasn’t home yet, so when Ella ‘took care of business’ I was the one on call…and she was less than happy about it. Don’t get me wrong, Ella loves me. She’s excited when I get home and we have so much fun playing together. And Joe will be the first to tell you that I can make Ella laugh harder than anyone else. But when it comes to actually having to take care of things like diapers, clothes, taking medicine and brushing her teeth, recently she has decided that daddy needs to take care of all of that. So last night, she did NOT want me changing her diaper. I surely wasn’t going to let her stay in it until Joe got home, so I did what any mom would do…I bribed her. Unfortunately, nothing worked. She didn’t want any of the goods I had to offer, so after several minutes of bartering I finally muscled her down, used my legs to hold her flailing arms down, and changed her diaper as fast as I could. She screamed. She cried for a good 30 minutes (or longer…I lose track of time when we’re in the middle of a meltdown). I was in the kitchen making dinner and would go back into the living room to check on her. At one point when I went in she was laying in the middle of the hardwood floor and using her feet to spin her body around in a circle (picture toddler break-dancing), all while crying for daddy. And as it always is, within minutes of Joe coming home she was completely fine and ready to play. Our family motto used to be, “Sometimes it just takes a mommy.” Now I always tell Joe, “Sometimes it just takes a daddy.”
Grammy Janet is coming to visit today. I know we’ll have a great time…we always do. And I know Ella is looking forward to playing tea party and doll house with Grammy. What’s funny is that this weekend we were telling her that Grammy was coming to visit and Ella said, “Grammy bring Ella a present?” She’s already caught on that Grammy always comes with something special for her. And when we asked her what Grammy was bringing, Ella informed us that she’s bringing her a butterfly. Well, I guess we’ll find out when Grammy gets here.
Sunday, January 24, 2010
Ode to Two Years Old
Ode to Two Years Old
Oh two years old, you start so sweet.
A ton of fun and oh so neat!
Then one dark day, from out of the blue,
You start to turn into a terrible two.
Oh two years old, oh two years old
Since when did you become so bold.
I miss my quiet, compliant child
So sweet and gentle and a temper so mild.
Now you want ice cream with sprinkles on top
And if you don’t get your way, your feet begin to stomp.
Soon you’re lying on the ground with all limbs flailing
You’re thrashing about and screaming and wailing.
It seems nothing we do can calm you down
Not a cookie, not a song, not a doggie, not a clown
Then all of a sudden, as fast as it came,
The tantrum is gone, you’re quiet and tame.
Oh two years old, oh two years old,
You’re such a mystery I have yet to unfold.
In spite of the tears and the screaming and fighting
You are much more loving and fun and exciting.
For as difficult as you are today,
These times will shape you when you’re old and gray.
And when I look back on two years old
I will feel so blessed to have these memories to hold.
Tuesday, January 19, 2010
MLK Day/Equality Day
Ok, enough about my home state, on to our weekend. Saturday morning we took a day trip to Richmond, VA to see the swearing in of VA’s new Governor. We choose not to talk politics on this blog because the truth is that in the end 1/3 of you would love us, 1/3 of you would hate us, and the other 1/3 would just be annoyed. So all politics aside, it was a great family trip and a cool thing to see. After the inauguration they had a parade that featured Minute Men, and had words of wisdom from George Washington, Patrick Henry and Thomas Jefferson. It was very cool. Then there were the bagpipes…Joe loves bagpipes (it’s the Irish in him). He said, “Why didn’t we have bagpipes at our wedding?” I had to gently remind him that I told him that he could have anything he wanted at our wedding, he just had to ask. Joe, being the easy-going guy that he is, didn’t ask for much, and not once during the entire wedding planning did he ever ask for bagpipes…not once! If he had asked, I would have done everything in my power to have them. So now we are trying to come up with some event where we can have bagpipes. Maybe Joe’s graduation party…then our neighbors would hate us. We’ll see.
On our way home we stopped at one of the greatest restaurants in America…The Cracker Barrel! Shopping and eating at one venue…and candy from my childhood. Ahhh, it can’t get much better than that. I had a traditional southern dish of Country Fried Steak and sweet tea. My mouth is watering just thinking about it. After lunch Ella slept the rest of the way home. We had a nice outing for the day.
Sunday and Monday were pretty uneventful. We had some friends over for lunch on Sunday, which is always a fun time. And Monday we stayed at home and cleaned out our closets. It was way overdue! My attitude was if it doesn’t fit then it’s going to the Salvation Army. I was able to clean out a lot of stuff that I haven’t worn in years, and I took it upon myself to clean out Joe’s closet too.
In other Murray news, Joe got a new job!!! PTL! I am so proud of him! He’ll be working as Legislative Council for a member of the House of Representatives (I won’t say who to protect the innocent). This is a great step for him and I know he’ll do a great job.
Finally, here are some of Ella’s funny phrases for the week:
While holding up Joe’s pocket Constitution and “reading” – Once upon a time there was a little girl named Ella and she had her boogies. The end. That was a great story, mommy.
She and I were in her room playing and she said: I’ll go show daddy. I’ll be right back. (while holding up her finger as if to indicate that it would be just a minute).
Yesterday when Joe was going to take a shower: Ella: Is daddy going to take a shower? Joe: Yes. Ella: Is daddy going to use soap? Joe: Yes. Ella: Is daddy going to use shampoo? Joe: Yes.
Apparently she wanted to make sure he was really clean.
Wednesday, January 13, 2010
Spoke too soon
The best news of the day is that we went for Ella’s well visit this morning and she weighs 26 pounds! According to my internet research this puts her in the 27th percentile! I can’t believe it! Ella has never been above the 25th percentile, and even that was when she was just a few months old. Ever since around 6 months she’s been below 20th(with most of that time being spent in the 7th percentile), so this is great news! Sure, she still has nothing on her cousins Sam and Nate, who each have a good 10 pounds on her, but we’re still pumped.
Ella also didn’t have to get a shot today. Joe, however, wasn’t so lucky and the doctor suggested that he get his flu shot while we were there. Ella watched daddy get his shot and I told him that no matter what he felt, he had to keep a smile on his face and at the end say, “That didn’t hurt.” He did a very good job and said his line as written, then turned to the nurse and said, “Actually that does hurt.” Ella was a rock star at her appointment. We got her a doctor kit for Christmas in hopes that it would make going to the doctor a bit easier. I think it helped. When the doctor went to listen to her heart she knew exactly what was going on and she sat perfectly still. Of course she gets the most excited when it’s all over. She starts announcing to everyone, “Ella’s all done!”
There’s not much else happening in Murrayland. There is an Elvis exhibit at the National Portrait Gallery that I think we are going to visit this weekend. In case you missed it, Elvis turned 75 last week (Jan 8th). That will be a fun family activity.
Thursday, January 7, 2010
New Year...New Murray Happenings
Ella is getting into a more kid-friendly routine. We’re trying something new now that Joe isn’t home late. We used to let Ella stay awake until Joe got home from class. Sometimes it was 10:30 or 11 pm, but if we didn’t keep her awake they would go days and not see each other. Now she’s going to bed at 9. Of course this means she’s waking up earlier, but it’s worth it to be able to watch the Golden Girls instead of Yo Gabba Gabba.
Ella also just got a big girl bed! Actually it’s a mini big girl bed (toddler bed) but she loves it. When we were in WY she slept in a toddler bed and we decided that depending on how she did while we were there, we would move her out of her crib. So far she’s only fallen out one time. She’s still not a fan of having covers over her, so she just sleeps without them, but she likes her bed overall. And she really likes that she can climb in and out of it all by herself. The bed is so little that it makes her room look huge! Her name that used to be right above her crib is now miles from her little bed.
This weekend I cleaned out the attic and put all of Ella’s baby clothes in plastic bins. It was happy and sad going through her clothes. I’m not that mom’s that cries when I have to pack away clothes that are too small, but I do get sentimental. All of a sudden we don’t have a baby anymore. I look at her pictures and I see a little girl. The baby face is gone. The tummy is fading while her body becomes more long and lean. She’s a little girl. But…and that’s a big but…I don’t really miss the baby. I really like who Ella is becoming. I like that she has a mind of her own. I like that she can tell me what she likes and doesn’t like. The guessing game is coming to an end and that is very refreshing. When something hurts she says, “owie” and when something itches she says “Mommy scratch.” She tells me what she wants for dinner and what pajamas she wants to wear. This whole growing up things really makes life easier.
Ella has also recently learned the proper use of the word ‘too.’ She now uses this word ALL THE TIME!!! At least she uses it correctly. On Saturday the cleaning lady was at our house and when Ella heard the vacuum running she said, “Can mommy vacuum too!” Umm…no. That’s why we have a cleaning lady. And every morning when I blow dry my hair she informs me that daddy is going to blow dry his hair too. And sometimes Boppie (Metti) is going to blow dry her hair too. No matter what one person is doing, someone else is going to do it “too.”
She really is a funny kid. She sings all the time and asks us to sing along with her. She loves to dance and when a commercial comes on TV that has good dancing music we stand up and dance together. I like having a 2 year old…except when she throws a tantrum…then I’m not a fan. The good news is that it seems like the tantrums are becoming less and less. Let’s hope that soon she will phase completely out of them.
Monday, January 4, 2010
Happy New Year!
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.
Friday, January 1, 2010
Christmas Top 10
If I were to write a post containing every detail of our Christmas vacation, it would be ridiculously long. So in order to spare your reading eyes, and my typing fingers, I’ve decided to post my top 10 favorite memories from Christmas in Wyoming.
10) Ella being on East Coast time while we were in Mountain time zone. This meant she went to bed early, which meant Joe and I got to have adult conversation and watch movies.
9) Watching Sam and Nate climb up on EVERYTHING!!! And watching Ella look at them as though they were so immature. I learned that there is a HUGE difference between 2 year old boys and 2 year old girls.
8) Joe, Curby and Paw Paw going to Bear Lodge to go snowmobiling. I knew they would have a great time, and they did.
7 )Going to the Christmas Tree park and watching the kids sing and dance in the middle of the gazebo.
6) Sam constantly singing “La La La!!!” This ties with watching my brother act silly and his boys cracking up while Ella just looked at him like he was nuts. Someday she’ll be saying, “Don’t mind him…that’s just my Uncle Curby. He’s weird.”
5) This conversation with my dad.
Me: Hey Dad, we got kind of cold last night. Would you mind putting the temperature up a couple of degrees tonight?
Dad: Sure. So you want me to set it at 52?
Me: Wait…you keep the temperature at 50? (with a complete look of shock on my face)
Dad: Yeah (completely straight faced)
Me: Well, no wonder we were cold. Could you maybe put it in the 60's?
4) Relaxing!!! I went to bed every night before 11, and stayed in my pajamas as long as I wanted to every morning.
3) Catching up with good friends that I haven’t seen in far too long.
2) All three grandkids playing piano with GiGi while GiGi and Paw Paw…and Ella sang.
1) Spending time with my wonderful family.
It was a wonderful Christmas. Sure, we had a 2 day delay getting out there, but we were able to extend our trip by 2 days on the back end, so it worked out great.
And as a little side note, Ella’s skin was rockin’ in the W-Y-O. She didn’t have the redness that she usually has, and any new blisters that she got seemed to dry up and heal within a day. Yay for dry weather!