Questions, questions and more questions

The average 4 year old asks about 400 questions a day.  I think in Ella’s case it would be easy to add a zero to the end of that number.  That girl asks a TON of questions!  And each question she asks spurs on about 25 more questions.  It's obvious that she's soaking in every ounce of information she can.

Lately the questions have taken on a new level, and most of the time I don’t know how to answer them.

I get a lot of questions about why Ella has boo boos but her friends don’t.  While watching commercials she’ll ask me why the kids on TV don’t have covers like she does.  My standard answer is that God gave her special skin.  She then goes into a long conversation about how God chose her to do important things and how she is a gift that God gave mommy and daddy.

The other day Ella and I talked to my dad on the phone.  When we hung up the phone it was obvious the little wheels in her head were turning.  She looked at me and said, “Mommy…GiGi is your mommy and Paw Paw is your daddy.  Grammy is daddy’s mommy, but (said with a very concerned face and voice) daddy doesn’t have a daddy.”  That was NOT something I was prepared for.  It was obvious that this really upset her.  She loves her daddy and the thought of her daddy not having a daddy was very sad.  We had a long conversation about how daddy’s daddy, Grandpa Bill, is in heaven.  Of course that lead to more questions about heaven and how Jesus lives there, and where heaven is located.

A few days later we were sitting down to play the piano.  Ella requested “Jesus Loves Me” then looked at me with those big blue eyes and said, “Mom, Jesus lives in heaven, right?”  “Yes,” I responded.  “Then how does He see us?  If He’s in heaven, how does He know what we’re doing?”  I answered it the best way I could and told her that even though Jesus is in heaven, he still looks down and knows what we’re doing and helps us.

Ugh.  These are getting harder by the day.

Sunday morning some friends of ours got baptized at church.  Ella was very curious about this whole process.  Obviously she is not a fan of bath tubs, so the thought of someone going into a “big bath tub” in front of the church was very strange to her.  She asked a lot of questions about why they were getting baptized and what it means.  Joe and I tried to explain it to her the best we could that our friends asked Jesus into their hearts and promised to live their lives for Him.  After you make that decision, it’s important to get baptized.  Usually Ella colors during the sermon, but I swear this week she was listening to everything Pastor Don said about getting baptized.  After church she said, “Daddy, you and mommy haven’t been baptized.”  It was a great opportunity to tell her about how we each made the decision to live for Jesus and got baptized.  She then looked at us and said, “But I don’t have to get baptized.”  Joe and I explained to her that it was her decision when to get baptized.  When she felt like it was time and God wanted her to do it, then she would get baptized too.  But none of that would happen until she was ready.  She liked that answer…she likes being in control.

Add on top of all those questions, the death of Melissa, and we had a whole slew of new questions.  She’s very interested in why people go to heaven.  At first I would tell her that Melissa, just like Grandpa Bill, was sick.  Her body was very, very sick, so Jesus asked her to come live with Him in heaven.  Then…Joe got sick.  It was just a very minor stomach bug that only lasted a couple of days, but Ella was concerned that her daddy was going to go to heaven too.  I tried to explain that Melissa and Grandpa Bill were very sick and weren’t getting better, but daddy was getting better and he would be ok.  I dread the future of this discussion.  The older Ella gets the more and more people she's going to know who die...some will be friends.  I dread that day.  How do I explain to my sweet little girl that her friend died because she had the same disease Ella is fighting?

All of this to say, it has been reaffirmed that I don’t know what in the heck I’m doing with this parenting thing.  I fake it the best way I know how, but I am at a loss with most of these questions.

Heartbroken

I’m heartbroken.  My good friend and former roommate, Melissa, went home to be with Christ this morning.  In October she was diagnosed with stage 4 cancer.  She died today…almost exactly 5 months later.

Cancer stinks.  It stinks on so many levels, but today it stinks because it took the life of my awesome friend.

I first met Melissa back in 1997 (or 1998) when I was working for World Changers.  We had a project in Norfolk, VA and I met this girl who was interning at the Southern Baptist Convention office there.  2 years later Melissa worked for World Changers in the national office in Atlanta, GA.  I wasn’t working for them anymore, but I did get to meet her again when I stopped by the office to say hi.  Little did I know that soon we’d be roommates.

Melissa moved into the Martin Mission House a year after I did.  She was coming to Boston to be the new campus minister at the University of Massachusetts in Lowell (UMass Lowell).  We instantly hit it off (although if you didn’t instantly hit it off with Melissa then there was something seriously wrong with you).

This picture makes me laugh.  Not so much the picture itself, but the story behind the picture.  One Saturday Melissa and I decided to go for a road trip.  We were going to just get in our car and see where the road took us.  Since this was in the days before GPS, we got lost…really lost.  I think we drove around for 4-5 hours and didn’t have a clue where we were.  I honestly don’t even think we had a map in the car (because we were really smart like that).  Somehow we came across this pumpkin patch.  They had mountains and mountains of pumpkins that you could climb.  I’m pretty sure we got our picture taken at the top of one, but I can’t find that picture.  What I did find is this picture.  Melissa had the greatest smile.

 This picture was taken on yet another adventure drive.  This time, we at least knew where we were headed.  We decided to go to Salem, MA and learn all about the Salem Witch Trials.  (Did I mention that we were dorks).

 

Finally, this picture…this is probably my favorite picture from my Boston days.  We were the 3 roommates at the time and several of us from church headed to New York City for Thanksgiving.  I had never been to New York before, so this Wyoming girl was very excited!  We woke up early and headed downtown so we could see the parade, and stayed in the city all day.  It was FREEZING!  By the end of the night we were a pretty cranky group and were ready to call it a night.  Suddenly this wonderful Santa entered our lives.  He had one-liners that had us cracking up for weeks.  Even now when I think about him I laugh.  You can even tell by this picture that we had been laughing.  It was a great ending to a pretty crappy day.

I have several other pictures of Melissa from our time in Boston, but these are my favorites.

My heart aches with how much I miss Melissa.  I want to see her smile, just one more time.  She had a smile that could light up a room.  I know a lot of people say that, but with Melissa it was true.  She has forever changed me.

Goin' Back to Cincinnati

Well, we just returned from another trip to Cincinnati.  In a nutshell, Ella is doing pretty well, all things considered.

We flew in Wednesday night and headed straight to bed.  Ella’s first appointment was at 8 am Thursday morning.  Ella is NOT a morning person.  If she could sleep until 10 every day, but stay up until midnight she’d probably do it.  As much as I’d love to fault her for this, she takes after me so I have no one to blame but myself.

Her first appointment was with the dentist.  She did a great job showing them her “fancy” teeth (that’s what she calls her teeth that have been capped).  At this point all looks good and she doesn’t need any more dental work right now.

Next was the ophthalmologist.  Nothing new to report here either.  She gets new glasses (which is good considering hers are over a year old).  Ella has specifically requested the lenses that change into sun glasses, just like her daddy has.  I also need to start lubricating her eyes more to hopefully avoid more corneal abrasions.  We already use the eye gel in the morning and at night, but now we have to do drops in the afternoon.  I’m not looking forward to that.  Otherwise her eyes look good.  A couple of small scars from past abrasions, but nothing that really concerned the doctor.

After lunch we headed to the clinic.  This is the main point of our visit.  We get to talk to any other doctor you might possibly think of, and ask as many questions as we like.  Nothing really new to report here either, other than we all are in agreement (Joe and I included) that the time for Ella to get a g-tube is drawing near.  It’s not going to happen immediately, but it will be in the near future.  As odd as it sounds, I think we’re both kind of relieved.  We knew this was coming down the pike, and the past several months the stress of trying to make Ella eat more has really gotten to me.  It’s not that she doesn’t eat…the child eats (boy does she eat!).  It’s just that it’s impossible for her to take in enough calories to do all that her body needs to do.  She can’t heal, fight infection (wound infections and regular 4 year old infections like a cold), gain weight, grow taller, and cognitively develop.  She takes in as much as she can, but in order for her to get all of the calories she needs to do all of that stuff, she’d pretty much have to eat around the clock.  That said, we both feel like that is the right next step to take.

It was great talking to all of the medical professionals and getting their thoughts and suggestions, especially on getting things ready for school next year.  It’s so comforting to have those resources.  They work with more EB kids that anyone else, so it’s great to pick their brains.

Ella had been requesting shrimp for dinner, so after the clinic we headed out to a local hibachi place.  I have to be honest…the food was good, but it was no Hana Tokyo.  Anyone in Alexandria knows that Hana is the best hibachi on the planet!

Friday our plan was to go to the hospital to get Ella’s blood work, then head out for a fun family day.  Unfortunately those plans got ruined once we had the blood work done.  Ella’s iron level was really low…really low.  This is common for EB kids and it’s even common for Ella.  She takes A LOT of iron every day (and eats a lot of red meat) and had an iron infusion after her surgery in August, but due to constant open wounds it’s really hard to keep her iron at a normal level.  So we ended up spending the day in the hospital while Ella got another iron infusion.  Ella was a trooper through it all.  Hopefully this will give her more energy and help her heal faster.   The bad news is that it looks like these infusions are about to become the norm…at least for a little while.  It would be awesome if we could get her iron to a normal level and be able to keep it there.

The best line of the weekend was while Ella was getting her iron infusion.  She had already eaten tilapia, a hardboiled egg and a big, soft pretzel.  She said, “Mommy, I’m hungry.”  I asked her what she wanted to eat and she looked at me completely serious and said, “A steak.”  See what I mean…this child can eat!

I don’t want to sound negative, but I want to be realistic.  What is becoming clear is that while Ella is doing great with her EB, there are a lot of things that are starting to catch up with her.  She’s in a lot of pain all of the time.  Her body is starting to have a lot of side effects of EB (the iron just being one).  This horrible disease is really starting to take its toll on her little body.  Please continue to pray for Ella and all the kids who fight EB.  Pray for a cure.

Trying to catch up

I feel like in the weeks following Christmas we have been running from one thing to another.  Unfortunately our house is paying the price.  Yes, the Christmas decorations are down, but that’s only because we had a real tree and it was starting to look pretty bad, so it had to come down.  The rest of our house looks like a tornado came through.  I keep thinking that if I have just a couple of days to get things back in order, then I’ll be fine.  Of course I don’t have 2 days in a row.  I only get 1 day at a time, so I clean what I can, throw some laundry in, run the dishwasher, and hope that by the time my next “free” day rolls around our house won’t be back to where it started.

I often tell Joe that I have no idea how I did everything when I was working full time.  I worked long days (sometimes 10 hours or longer), yet I feel like our house is messier now than it was when I was working.  Sure, we paid to have a lot of things done that I now do myself…Joe’s dress shirts used to be taken to the drycleaner, we used to have a maid (I miss her), we used to eat out a lot more, etc.  Now I get to do all of this…and I wouldn’t have it any other way.

All that to say, I’m sorry I’ve been neglecting you.  I’ll come up with something spectacular to write about soon (don’t hold me to that…we really have a pretty boring life).

In the meantime, here are some Ella-isms to tide you over:

The other night Joe was reading her Cinderella before bed.  She had several comments about the book, but my favorite was when Joe read, “Cinderella worked hard all day.”  Ella said, in her most sympathetic voice, “Just like you work hard, daddy.”

Last night I was modeling my new bridesmaid dress for Ella and Joe.  Ella said, “Mommy, you look beautiful in that dress!  I really like the bow!  Man, I wish I had a fancy dress like that." Of course she was disappointed that it's a "legs" dress and not a "no legs" dress.

After we got back from Disney World Ella would talk about it all the time.  One night before dinner she was sitting at the table staring at the picture of her and Cinderella and she kept saying, “I wish we could come back.”  Me too, Ella…me too.

Every night we have the same conversation:

Ella:  Mommy, I want to cuddle with you tonight, not daddy.

Me: Ok.

Wait 5 minutes

Ella: Mom, I decided that I want to cuddle with daddy now.  Not you.

It's so hard to say goodbye

Ella did NOT want to leave.  Here's a video of us leaving Hollywood Studios.  She knew we were heading home the next day and she wasn't happy about it at all.

Once again I'm having trouble uploading the video, so please click here to watch it on youtube.

Sad to leave Mickey's House

I think it's funny that she thinks that if she's hungry then we'll stay at the park and eat.  Obviously we ate a lot of delicious junk food while we were there.

Day 5 – Bonus Day

We were supposed to leave Florida on Monday and take 2 days to drive home.  We were having so much fun that we decided to stay an extra day.  Monday we headed to Hollywood Studios.

We decided to take this day a bit easier than we had the 3 previous days.  Instead of waking up early and getting to the park when it opened, we packed up the condo, said goodbye to the Burbs (my brother and his family) and got to the park a little after 10.

We had heard a lot about Hollywood Studios and fluctuated back and forth between going there, or visiting Epcot.  I’m so glad we decided to visit Hollywood Studios.  I was under the assumption that it was mainly for older kids and adults, but that was not the case at all.  Yes, there were bigger rides, but they had plenty for kids too.

First we hit up the Beauty and the Beast stage show.  We sat in the second row right in the center, so Ella had perfect viewing.  She was mesmerized by the whole thing.  Of course this is the whole show condensed into 30 minutes, so she also kept telling us what they left out.

Next we headed to the backstage tour.  This was really cool.  We got to see all sorts of things from movies past.  Here are a couple of highlights.

 Apparently this house was in the Hannah Montana movie.  I never saw it so I'll just take their word for it.

 Frozen Mr. Tumnus (right) from Chronicles of Narnia

 Herbie the Lovebug!

 20 points to whoever can tell me what movie this is from.  (Wendy, you can't play since you already won on facebook :))

 10 points to whoever can tell me what movie this is from.  Why only 10?  Because this one is a lot easier than the above picture.

We walked around the park for a long time just checking out all the movie things they had on display.  It was really cool to see them up close and now I’ll be checking every movie I watch to see if they’ve done any of their tricks.

Next came the Indiana Jones stunt show.  Joe has decided that this was his favorite thing of the whole trip.  It was really cool to see all the stunts and have them explained to us.

It wouldn’t be a trip to a Disney theme park without a parade.  This parade was different than the others in that it focused a lot more on the Pixar side of things.

Last but not least, we went on the Toy Story ride.  This was basically set up like a carnival game with 3D glasses.  You ride around in this little car and come to various screens.  With your gun you shoot at the screens to collect points.  This is the point in the post where I definitely will NOT tell you that yours truly (Katie, in case you’re not sure) had a grand total of 96,000 points.  I will also definitely NOT tell you that my wonderful, antelope shooting husband had a mere 73,000 points.  Granted, he had 54% accuracy in his shots and I only had 37% accuracy, but I had a faster trigger finger and that’s what mattered in this game.  To Joe’s credit, he has shot 1 deer and 2 antelope.  I, on the other hand, have never shot a big game animal (I’ve actually never tried).

 

We had a great time at Hollywood Studios and want to spend more time there the next time we head to Orlando…and yes, there will be a next time.

Tuesday morning we headed out bright and early.  We had intended to stop along the way and get a hotel for the night, but once we got driving we just decided to push through.  Ella was so exhausted after the whole vacation that she fell asleep at 9:30 am and slept until 1:30 in the afternoon.  We finally arrived home around midnight.  It felt good to sleep in our own beds, but we sure missed the fun we had in Disney.

Ella still talks about our trip every day.  Just last night she was staring longingly at the picture of her with Cinderella and she said, “I wish we could come back.”  Me too Ella…me too.