Friday, December 7, 2012

Ella-isms Part 4

I haven’t done one of these in awhile so I thought I would fill you on in just a little bit of what goes on in Ella’s 5 year old mind.

Ella asks a lot of questions.  I really try to be patient, but its hard when there are 20 questions in a row and you don’t know how to answer them other than to say, “I don’t know…God made it that way.”  Here are some of our favorite questions from the past few months.

“Mommy, how can Jesus live in my heart AND in heaven?”  She’s very interested in heaven.  She’s curious about what happens up there and can people see us when they live in heaven.

After several days of having the Christmas tree up, Joe kept forgetting to put the star on top.  Ella was getting pretty annoyed with her dad and finally one afternoon she said, “Why doesn’t daddy put the star on the tree?  What does he think there was when Jesus was born?  Nothing?”

This weekend Ella asked a question that I think is too deep for a 5 year old.  She said, “Mom, they say that Jesus died so that we can live…what does that mean?”

The best question of the weekend was when Joe and I were both in the room talking to her one morning and completely out of the blue she asked, “Where do babies come from?”  We gave the standard answer, “From God.”  That answer is no longer sufficient.  “No, when they’re in the mommy’s tummy, how to they get in there?”  Joe looked at me with a blank look (let’s face it, neither of us are ready for this conversation) so I answered with the first thing that came to my mind, “Magic…God’s magic.”

The other night Ella was in the bathtub and apparently something had fallen into the water.  She kept trying to get it out but was unsuccessful in her attempts.  Finally I heard her say, “Oh well.  C’est la vie.”  I guarantee she has no idea what C’est la vie means, and I know she didn’t hear that phrase at home.  She probably heard it at school and has now adopted it into her vocabulary.

One morning while getting ready for school I accidentally knocked one of the shelves in our bedroom and the shelf completely fell sending everything on it to the floor.  Ella looked at me and said, “A teacher would be really mad at you for that.”

One morning after getting ready for school, “Dad, mom just said a very not kind word!”  Joe: “What did she say?”  Ella: “No.”  Oh poor, spoiled child.  Heaven forbid that I actually tell you ‘no’ once in awhile.

The other night Joe was putting Ella to bed and they were reading a Veggie Tales book.  Ella said, “Dad, this book says Jesus is the Bread of Life…I thought He was our Savior.”

Needless to say, Ella asks a lot of questions and has a lot of thoughts on life.

Saturday, November 17, 2012

Celebration of Thanks

There has been something I've dreamed about since I decided that I wanted to be a programs.  I don't remember having a lot of school programs when I was growing up.  I remember one where I played a bird and I had 1 line, "Help!  Help!"  I remember going to see my brother in something when he was in about 5th grade, but that's it.  Other than basic choir concerts, or high school theater productions, I don't remember having what I would consider a "school program."

I love the idea of school programs.  I love the idea of a bunch of kids standing on a stage in paper costumes that they made and singing songs their teacher has made up.  I love the idea of kids practicing for a long time, then finally getting to perform it for their parents.

So today, I finally got to fully experience my first elementary school program as a mom.  When the teacher sent around a note asking for volunteers, I happily responded with a willingness to arrive an hour early.  I arrived with camera in hand ready to capture each and every moment of this event.  Ella had told me her special lines and sung me a few of her favorite songs, so I was excited to get to see it all come together.


All of the kids did such a great job!  They sang loud and spoke clearly so we all could understand them.  It was so cute and I am SO happy that Ella has such a great kindergarten teacher that goes to great lengths to give the kids great experiences like this one.  This is only one of the events she has on the calendar for the year, so now I'm extra excited to see what else she has up her sleeve.

In case you don't know the true Thanksgiving story, here it is presented by Ella's kindergarten class.  Be sure to be on lookout for child #7.


In this video I almost missed Ella's big moment!  She was Turkey #1


Here is Ella telling us what she's thankful for.  It was at this point in the program where Metti and I started laughing.

We laughed so hard because Ella said she was thankful for her pets.  Just in case you're not aware, Ella doesn't have any pets.  In fact, a few weeks ago I asked her what she would like Santa to bring her and she said, "Maybe this year Santa will finally bring me a dog!"  After the program I asked her which pets she was thankful for and she said she's thankful for her fish.  Well, at least I know Ella the fish, Belle and Elvis aren't neglected.

And finally, this is Ella's favorite song from the program.  She sang it to me all afternoon.

As you can see, the show was totally awesome!  I got every song and poem on video, so there's much more to see in the photos link.  It was so much fun to be a part of it all.

Tuesday, November 13, 2012

Happy Fall!

Yes, I’m well aware of the fact that it has been 3 weeks  since my last post.  I’m busy…and a slacker.  I’ll just hit the highlights for you.

Halloween was awesome.  Ella was the greatest Superhero in the neighborhood and daddy dressed up as her trusty sidekick, Wonder Dad.

What has become very clear is that Ella enjoys the idea of candy much more than she actually enjoys the candy.  She loves going door to door to collect, and she loves looking at her loot when she gets home, but she hardly eats any of it.  This is both good and bad.  It’s good because she actually prefers to eat real food.  It’s bad because Ella’s mom has a major sweet tooth and just hates to see all that good candy go to waste.

We felt fortunate to be able to participate in Halloween since hurricane Sandy hit us Monday and Tuesday.  Our house fared well and the entire time we were thankful for our new roof.  We did sleep in the basement since we have a massive tree in our backyard and if it happened to fall, it would land right on Ella’s room.  And we did lose power for about 19 hours, but 9 of those were while we were sleeping, so it wasn’t too inconvenient.

When we knew the storm was coming we went straight into prep mode.  With the last storm we lost power for a few days, so we wanted to make sure we were at least prepared this time.  We went to the store and stocked up on food that didn’t have to be refrigerated and didn’t have to be cooked (AKA, we bought 3 bags of chips and a pecan pie).  Joe spent 3 days searching high and low for a generator.  Every store in the area was sold out and the only other options were driving 4 hours to southern VA, or driving an hour to MD to buy one off of Craigslist (that was WAY over priced).  We finally decided to let the chips fall where they may and just survive without one.  After all, we have a fireplace and plenty of blankets for warmth and we have several friends that have generators, so we could just move food to their houses if needed.  On Monday morning a light bulb went off in my head…BJ’s (a wholesale store down the street).  I immediately called and they just happened to have 4 generators left.  I reserved one and Joe jumped in the car to go pick it up.  Even though we weren’t without power for long, this generator was a wonderful thing to have.  We were able to plug in our refrigerator and TV and any additional items that needed charging (cell phone, kindle, etc).  If it was really needed, we could have easily added a space heater.  Thank heavens for BJ’s and thank heavens for light bulb moments!

Before Halloween and before the storm I got to volunteer at Ella’s school for Harvest Day.  As a SAHM this is something I’ve dreamed of!  This, and her first school performance.  I dressed Ella in her overalls and straw cowboy hat, and headed to school with her.  As soon as I walked in the room a little girl said, “Look, that’s Joella’s mom!”  Even though she tried to keep her composure, you could tell that Ella was really excited to have me there for a few hours.  I know that in the not to distant future she'll be mortified to be seen with me, so I'm glad that at least for now she's happy to have me at school.

School continues to go really well.  Ella is growing so much and learns more and more every day.  I feel like I only see a small glimmer of the little girl she was when she started school.  She has grown in confidence and knowledge.  Last week her aide had to be gone for 2 days and unfortunately Ella had 2 different helpers those 2 days.  At first when I heard about this I was sure Ella would be a complete wreck.  Ella doesn’t do change well and she definitely doesn’t do new helpers.  Much to my shock, she was totally fine.  She hardly batted an eye at having a new helper.  I was so proud of her!

On Monday we had our first Parent/Teacher conference.  Before we left we asked Ella what her teacher was going to tell us about her.  Ella confidently replied, “She’s going to tell you how smart I am.”  Well, that’s exactly what she did.  She showed us all of Ella’s work and how far she’s come since the beginning of the year.  She knows A LOT and is learning more and more every day.  Reading and writing sentences is becoming so easy for this kid, and she’s learning and comprehending beginning math skills.  They did an assessment on Ella and out of 102 things, she only missed 8.  The kid is a GENIUS!  She even LIKES doing homework (she must have gotten that from the Murray side)!

She is still very shy and only talks when the other person talks first.  I asked her why she isn’t more chatty in school, since she doesn’t seem to stop talking at home.  She said, “Mom, because the teacher tells us no talking.”  It’s hard to argue with that.  She’s right.  Teachers do want kids to be focused at school and not talking all the time.

Those are the highlights from the past few weeks.  Thanks for sticking with me even though I'm really inconsistent with my posting.

Tuesday, October 23, 2012

Fall Festival 2012 AKA, the Fall Festibull

Ella LOVES going to our church Fall Festival every year.  Pastor Don has been announcing it in church for weeks and each time he mentioned the name Ella would nudge her dad and get a big smile on her face.  Ella’s parents love going too.  It’s a great time to talk with our friends and catch up with people we don’t see very often.  In fact, every year we run into someone who we know outside of church and they were just passing by the church and happened to see a festival and decided to stop.  Also, every year Joe and I invite many of our friends and neighbors who either attend another church, or don’t attend church at all.  One of those neighbors we invited 3 years ago and now they are active members of our church and their boys even attend the church preschool.
All of this to say that we love the Fall Festival!

Saturday night Joe told Ella that we would be going to the Fall Festival the next day and she got so excited!  She started talking about her favorite things: cotton candy (I am not surprised that this was first on her list), snow cones, all of the fun games, the train, seeing her friends dressed up, and the list goes on.  She kept talking and talking about the Fall Festibull.

Sunday morning at 3 am Ella woke up crying.  When I went in to check on her she said that her eye hurt.  This was not a good sign.  Kids with EB get corneal abrasions very easily, and for Ella, she always gets a really bad one when the weather starts to change.  I’ve been keeping her eyes extra lubricated with Refresh PM, but most of the time that only helps a little.  She still, eventually, gets a corneal abrasion and spends at least 4 days sitting in our basement with all the lights off just listening to the TV.

After I put some ointment on her eye and got her settled back in, I went back to bed and prayed that she didn’t have a corneal abrasion.  I prayed that this was some sort of fluke.  Unfortunately when Ella woke up at 8 am she still wouldn’t open her eye, her eye was puffy and red, and all she wanted to do was lay in bed with her eyes closed.  The first words out of her mouth were, “But how can I go to the Fall Festibull if my eye is hurt?”  I had the horrible job of explaining to her that she couldn’t go if her eye was hurting her, but that we would find another fun Fall Festival to attend. 

I did what moms like me do…I cried.  How is this even fair?  This poor kid has to deal with so much and all she wants to do is go to the Fall Festival.  Of all the days for her to wake up with a sore eye, and today is the day.  If it was Monday I wouldn’t care.  I’d take her out of school and keep her home for a week if I had to, but it’s not fair that she has to miss one of her favorite events of the year all because she has this stupid, unforgiving disease.

So I spent the next couple of hours praying.  Praying that if we stayed home from church and gave Ella some rest, that maybe by 4 pm we could put a patch over her hurt eye and at least she could attend the Fall Festival and get her cotton candy, even if she wasn’t able to participate in the games.  Soon she decided that she wanted to sit up and listen to her music while Joe fed her some soup (she hasn’t mastered the art of eating with her eyes shut yet).  After a couple of hours she was sitting in bed and Joe was sitting in the rocker in her room.  He looked up and Ella was sitting there with a big smile on her face and BOTH of her eyes open!  Joe freaked out so much that he spilled his coffee.  Of course they called me into the room to show me the great news!

Now I know most people would come up with some logical reason as to why her eye suddenly stopped hurting.  The truth is, I don’t care what the reason is.  We are choosing to see this as a special gift God gave our family.  Even Ella said, “Mommy, God made my eye better so I could go to the Fall Festibull.”

The Fall Festival was just as awesome as Ella remembered.  She got to do all the fun things she did in previous years, but this year we knew the ropes so it was even better.  The past 2 years she’s been on the last train ride of the day, which means she got a shortened trip.  This year we were on the 2nd train ride of the day, so she got a nice, long ride.  Ella played all the games she wanted to and even watched daddy play some of the bigger games.  She didn’t want to get her face painted, but was more than happy to choose a design for mommy, so I spent most of the night with a pink heart on my face (which unfortunately didn’t come off as easily as I was told).  Yes, she got her cotton candy and even shared 2 snowcones with us.  Mom and dad got their popcorn and hot dogs.

We all had a great time and Ella was even dressed up in her Halloween costume, which was a big hit.  Yes, I have pictures and will post them soon.  But for now, I’m so thankful for what we believe was a miraculous healing on Ella’s eye, and we’re thankful we were able to be there.

Monday, October 8, 2012

Murray Update

We are now well into the swing of the school year.  Ella is adjusting and getting better every day.  She still gets nervous in the mornings, but by the afternoon she has a smile on her face and says she had a good day.  Every afternoon I ask her what her favorite part of the day was and every day she says, “Going outside.”  My friends who also have kindergarteners and I have compared notes and we all experience the same thing…we have to pry information out of our children.  I now have Ella tell me her top 5 activities of the day.  By the time she his #3 she’s on a roll.  Her Encore class for the day (either PE, Art, Music or the library) is always one of her top 5.  Recess is always another.

We have now entered the phase of homework.  Each Monday Ella comes home with several worksheets that need to be completed by the following Monday.  She gets 4 worksheets (front and back) so my plan is to do one sheet each night M-Th, then have Friday night and the weekend off.  This week we did pretty well with that plan.  She just has one line of one worksheet to finish up this weekend.  The good news is that usually Ella loves doing her homework.  She is so proud of herself when she finishes the work.  And I have to be honest, there are times that even I’m impressed with how much she knows.

Joe and I are official members of the PTA.  I went to the first PTA meeting last week and have already volunteered my time to work at the upcoming book fair.  I’m not sure how involved I’ll be, but I’m glad to be a part of the group.

We went back last Friday to have Ella’s hemoglobin checked again.  She is now at a 10.  While not as high as it has been, this is still great news and meant she didn’t have to get an IV.  Her veins get another month of rest.  What was encouraging to see was that after her blood check I had planned on taking Ella back to school.  Since we didn’t know what Ella’s day was going to be like, her aide had taken the day off and was unable to come in for the afternoon, so the school had found someone else to help her for the day.  Ella was nervous about being with someone new, so I gave her the choice of either coming home with me to spend the rest of the afternoon, or stay at school and try it out with a new helper.  Let me just say that I was being completely sincere in my offer.  At this point Ella was only going to be in school for 3 hours, it had already been a long day with an important doctor visit, and I honestly didn’t want to put Ella (or myself) through any undue stress.  I wasn’t trying to use reverse psychology on her or anything, I fully intended to let her skip the rest of the day and just hang out with me.  Ella, completely on her own, decided that she needed to be as brave as a princess and try going to school with a new helper.  She said, “Mommy, I think it would be good for me to stay.”  I was so proud of her for making this decision.  It was not an easy one for a girl who likes for things to be predictable.  I really think she wanted to stay and get her Friday prize from the treasure box.

Something I would appreciate prayer on (and this isn't new) is that Ella would start making some friends.  She's still very shy and only responds when others initiate.  Since she's in a new school with all new kids, none of the other kids are really sure how to respond to Ella.  They, obviously, tend to gravitate toward other kids who are outgoing and will play with them, which means that Ella is unintentionally left alone.  I'm not sure if it's all EB related as to why the other kids are hesitant to play with her.  I think there are a lot of factors at play and I just pray that one little girl will initiate contact with her and be willing to look beyond Ella's shyness to be her friend.  I also continue to pray that Ella will come out of her shell even more and start to reach outside of her comfort zone to initiate friendships with other kids.

I still question every single day whether or not sending her to kindergarten was the right decision.  Some days I want to pull her out and home school, other days I want to call the preschool and see if they will take her back, and on other days I want to start looking for a smaller private school.  We have committed to seeing this through so Ella isn't going anywhere in the near future, but I still can't help but wonder if we're doing the right thing.
That pretty much hits the highlights of the last few weeks.  If I don’t blog that usually means there’s nothing too exciting going on.  Maybe things will pick up now that the holidays are approaching.

Wednesday, September 12, 2012

Stories by Ella

Yesterday after school Ella started telling me stories.  I was able to get a couple of these stories on video and they're just too cute not to share.  I'll tell you the same thing Ella told me before she told these stories, "Mom, these might sound similar to The Very Hungry Caterpillar."

In this last video Ella is talking about kindergarten.  It's hard to get her to fill me in on all of the details that happen throughout her day, so this is the best I've got to share.  I love at the end where she tells me that she's going to live in our town forever, just in another house.  She doesn't like that GiGi and Paw Paw and Grammy live far away.

Monday, September 10, 2012

Kindergarten Update

Well, we made it through the first week of kindergarten and now we’ve started the second week.  To put it lightly, the first week was rough.

We’ve been preparing Ella for this for 2 weeks, ever since K-Prep.  The week before school officially started we went to the school and met with the nurse and Ella’s aide.  Both are wonderful women who only want Ella to have a successful year.  I showed both women how to take Ella to the bathroom, what to do if she needs new covers on her arms or anywhere else, when and when not to freak out, etc.  Joe and I knew it was going to be a tough start, but we hoped and prayed for the best.

Since Monday was Labor Day, Ella started school on Tuesday morning.  Unfortunately her anxiety got the best of her and she woke up at 2 am crying because she was so scared to go to school.  Tuesday morning was full of tears.  Ella was beyond nervous and had countless questions about what was going to happen that day and when I was going to come get her.  Shockingly I held it together until we were walking away from the school.  As we were leaving it suddenly hit me, we have a kindergartener, and then the tears started flowing.  At least Ella didn’t see the tears, I think that would have sent her over the edge.  She ended up calling me twice from school.  While not ideal, I’d much rather her call than me have to go down there.  And both times she seemed much better when we got off the phone.  I think she just needed to know I was still here.

Wednesday, Thursday and Friday were still rough, but things got better every day.  She still had a tough time in the morning and being dropped off, but she only called me once each day, and on Thursday she wasn’t even crying.  Every afternoon when I picked her up she was smiling and said she had a good day.

It’s not easy being a parent to a kindergartener.  Every day I question whether or not we’re doing the right thing.  The school is wonderful and all of the administrators have been fabulous in making sure everything Ella needs is taken care of, but it’s so hard not to question whether or not she’s really ready for this.  Kindergarten is a big deal, and going for 6 ½ hours is an even bigger deal.  Every day I question if we should homeschool her, question if we should have held her back in preschool for another year, question whether we should have sent her to a smaller, private school that would let her go a half day.

The only real comfort I have found is that I know Ella’s not alone.  We have heard dozens of stories from other friends who are going through the same thing, or have gone through it in the past.  Several of Ella’s friends at church (without additional health concerns) had severe anxiety leading up to school and would also wake up with nightmares about what was going to happen.  Even some of the most social children I know have had a hard time adjusting to this new adventure.  Many of our friends whose kids are now grown share stories of how their children would cling to their leg for weeks or months because they were so afraid to go to kindergarten.

All of the struggles Ella has faced going to kindergarten are completely unrelated to her EB.  It’s a big step and she’s nervous about it.  Growing up is hard.

On a good note, today was a bit better.  She still woke up crying, but she didn’t cry the whole way to school…progress.  I gave her a little heart sticker to keep on her shirt to remind her that mommy is with her and loves her forever.  She said that made her feel better.  And she did cry a little bit when we dropped her off, but she didn’t fight against going into the building…progress.  Last week her daily phone calls were between 10 and 10:30, but on Friday she didn’t call until around 12:15.  It is now 1:00 and I haven’t heard from her yet today...progress.

In another big step, we took Ella to her own Sunday School class yesterday.  For the past 5 years we’ve just taken her to big church with us, which means not only has Ella not gone to her own Sunday School class, but Joe and I haven’t been able to go either.  Now that she’s 5 and thinks much deeper about things, she’s really started asking a lot of questions.  She’s very interested in heaven and whether or not people can see us when they’re up there.  She’s also very interested in how Jesus can live in heaven AND in her heart.  Joe and I decided that this is the time for her to go to class with her friends and learn all about the bible, Jesus and all of Jesus’ friends in the bible.  We dropped her off yesterday (with many tears) and we were able to go to our own Sunday School class!  It was so great to be with all of our friends again and talk with people we haven’t really been able to talk to in awhile.  While we were gone Ella did great in her class.  When we picked her up she was so glad to know that it wasn’t nearly as long as regular school and that we were still in the church building.  She was also really glad to learn that she still gets to go to big church with us (her favorite part of the week…she loves the music).

It’s been a week with a lot of change and trying new things.  That’s tough on a little girl who doesn’t like change.  On top of all of this, she’s had to start a new bedtime so that she can get enough sleep for school (she has to be there at 7:50 am, which means she has to be in bed no later than 7:30 pm), which means we can no longer have dinner as a family (Ella is completely crushed by this), and also means that daddy doesn’t get to tuck her in (nighttime is their special time together).  It has been a lot.  I’m just praying that this week goes smoother than last week, and that each week we see improvement.  She has to grow up, but it’s hard to let it happen.