The Final Week

This is the last week of summer vacation before school starts.  Yes, here in Northern VA school starts a bit later than the rest of the country.  On the other hand, school didn’t get out until the end of June so it all balances out.

Both Ella and I are ready for school to start.  She misses her friends, and quite frankly, she’s bored.  Last summer was a busy one.  We spent most of the summer running around with activities, visiting family and all in all having a great time.  Unfortunately by the end of the summer we were all exhausted and needed some time to just relax.

This summer I decided to take the opposite approach…we did nothing.  Well, not really nothing, just not nearly as much as we did last summer.  This year she had 1 week of VBS, we took a trip to NJ to visit family, and we went to Cincinnati/Indianapolis/Hershey for a week.  Other than that, we spent the summer going to $1 movies and hanging out at home.  At the beginning of the summer I was convinced this was a great idea.  As the summer has progressed I can now see the error of my ways.  My poor kid is bored out of her gourd.  She is itching for some activity…any activity.

We’re at the point now where every morning she wakes up and the first thing she asks me is, “Are we going to do anything fun today?”  And I’m at the point where I have to make up fun activities, “Yes!  We’re going to BJ’s!!!”  One day I needed to go to Target and BJ’s both, but in an effort to spread out the activities, I decided to go to Target one day, and save BJ’s for the next.

Fortunately this week we do have several fun activities including Chuck E. Cheese’s and her school Open House where she’ll meet her new teacher and see what friends are in her class.

Due to our lack of activity, there really isn’t much to report on this end.  Once school starts back next week I hope to have more exciting things to report on.

A Fine Line

People often ask me if I get annoyed being asked about Ella all the time.  In complete and utter honesty…no.  Most of the time it really doesn’t bother me that people ask about Ella.  I’m not oblivious to the fact that she looks different than typical children.  I’m well aware that when others see her they don’t see your every day, run of the mill 6 year old child.

I feel incredibly fortunate to live where we do.  Washington, DC is a vast quilt.  We live in a melting pot for every kind of culture, religion, ability, age, artistic expression, attire, and the list goes on.  Being “different” in DC isn’t nearly as out of the ordinary as it is in other parts of the country.  That said, while we are surrounded by hundreds of thousands of people, our neighborhood is quite small.  I often joke that everything we need is within a 3 mile radius of our house.  I always shop at the same grocery store, which means that most of the cashiers have seen Ella numerous times.  We have gone to the same pediatrician since she was born.  We have used the same pharmacy since she was born.  Our neighborhood is full of kids who go to school with Ella, so when we see them out and about they don’t react because they see her every day at school.  When we eat out we usually hit up the same 10 restaurants, so they don’t even give a second look and in most cases, they are on a first name basis with Ella. 

Joe and I decided long ago that we had 2 choices: 1) Stay home all the time and raise Ella in a bubble, or 2) Go out into the world and learn to ignore all of the stares and answer the questions as open and honestly as we can.  The truth is, a majority of the people who come up to us are genuinely interested in what happened and are only asking out of compassion.  Most people assume she has been in some sort of fire and feel like they can offer help.  I appreciate that they want to help and am perfectly fine informing them about EB.  Of course there are those few that choose to give dirty looks or make rude comments, and there are definitely those that assume I’m a bad mom and she’s been left out in the sun for too long, or I’m feeding her too much sugar.  But for the most part, people are kind.

Unfortunately, Monday I had one of those terrible experiences that made me want erupt.  Monday I decided that we were going to have a mommy and Ella day.  Nothing too exciting, just a day out of the house for us to spend together before school starts back in a couple of weeks.  It started with a trip to Target to buy school supplies.  Ella read each item on the list perfectly while I pushed the carriage up and down the aisle to grab the items.

Once we finished with Target I told Ella that we were going out to lunch, just us girls, and she could choose any restaurant she wanted to.  It didn’t take her long to decide that she wanted pizza and wanted to eat at a local restaurant where we often eat.  In fact, when we arrived Ella’s first question was whether or not her favorite waitress, Betty, was working.  Betty was not working, but that’s beside the point.  We sat in our booth and soon placed our order.  As we were waiting for the pizza to arrive, I decided to take Ella’s picture and text it to Joe.  While I was focusing my phone, Ella got a strange look on her face and started to look at something out of the corner of her eye.  Standing at the end of our booth was the bus-woman (not sure what to call her, but the woman who buses the tables when people leave).  She was staring at Ella very intently, as if she was examining her entire body.  People often stand back and try to get a look at Ella, but within seconds they look away.  And they usually stare from a distance in hopes that mother bear will not catch them in the act.  This woman, however, was standing right at the end of our table.  We were at a 2 seater booth, so she was right upon us.  I looked at her and smiled (this usually triggers something in the person that tells them it’s time to look away)…she still stared.  I asked if I could help her…she just stared.  I ignored her and took Ella’s picture…she continued to stare.  Finally, I started trying to have a conversation with Ella (who was obviously very bothered by this stranger)…the woman STILL stared.  She stood there for probably 10 minutes before finally walking away.  And every time she would walk by to clean another table, I could see her trying to catch a glimpse of my child.

Ella hates being stared at.  She knows how to answer when kids at school ask about her boo boos, and she knows to politely ask them not to stare.  She even knows that it’s not polite for her to stare at other kids.  Most of the long stares come from kids, and the worst are from kids whose parents don’t try to use the opportunity to teach them about what is rude and what isn’t.  There are parents who just stand to the side and let their kids say whatever pops into their mind while Joe and I try to redirect them away from our child.  But this was a grown woman who kept staring for a ridiculous amount of time.  I didn’t want to be rude to her by making a mean comment, yet she was being rude to us.  I wanted to say to her, “Hey Lady!  All I want to do is have a fun lunch with my daughter and all you can do is ruin that lunch by staring at her.  GET BACK TO WORK!”  But I didn’t want to cause a scene.

I don’t think I handled it the right way, by just trying to ignore it.  But I’m not sure what would have been the right way to handle it.  Being a mom is hard.  Being a mom to a non-typical child is really hard.  I want to protect her from those rude people, to yell at those who give her a negative look, or stare for just a minute too long.  But I also want her to learn that rudeness doesn’t always require a negative response.  There are ways to rise above it and hope that the other person learns something in the process.  I want her to see a loving mom who isn’t ashamed of who she is.  A mom who looks beyond the boo boos and answers questions from strangers with love.  Not a mom who walks around with her guard up waiting to attack.  My first responsibility is to Ella.  My job isn’t to teach others what is rude and what isn’t.  My job is to teach Ella how to respond to rude comments and stares with dignity and Godliness.  The last thing I want to raise is a child who walks around with a chip on her shoulder.

I have to admit, I have been known to give rude stares back.  I have been known to say “Stop staring at my kid!”  I have been known to contact a department stores headquarters and report employees who made rude remarks about Ella.  And yes, I’ve been known to yell (yes, full blown yell) at a kid (in front of his father) who came up and said “ewww” while pointing at Ella.  I’m human.  While I know those weren’t the right way to respond either, I also want Ella to see a mom who knows the limit and will stand up for her when necessary.  It’s a fine line between the two, and I’m still learning when to cross.

What I did on my summer vacation

Stop #1…pick up Sabrina.  Yes, Sabrina came with us.  The thought of going out of town for a week without her was unbearable.  So, we did what all freaky dog-parents do…we figured out a way to bring her with us.  Joe’s sisters in-laws (are you following me?) live in Cincinnati and are big dog lovers.  They agreed to watch Sabrina for a couple of days for us, which made us feel great.  Like most people, this couple fell in love with Sabrina.  In fact, when Joe called to check on her on Thursday the woman told us that Sabrina slept in her arms all night.  That is one spoiled dog!  But if you met her you would know that she deserves it!  She is the sweetest, most precious dog there is.

Stop #2…Indianapolis!  One of the perks of going to Cincinnati is that Joe’s sister only lives a couple of hours away, so it’s easy to take a little side trip down to see her and her family.  Ella has 2 cousins down there and one is just a few weeks older than Ella, so it’s good that they get to see each other.  And Sabrina loved meeting her dog-cousin Daisy.  They had a great time together and Sabrina missed her when we left.

While we were in Indy we got to reconnect with some of my greatest friends ever from my Boston days.  I miss Matt and Dana and was so happy to be able to grab breakfast with them!  And I was even more happy that they got to finally meet Ella in person.

Saturday afternoon we headed to the Indiana State Fair.  I feel like I need to explain something about myself…I like crowds.  I know it sounds nuts, but I really do.  I love going to places like the fair or a theme park and just watching people.  Long lines don’t bother me.  Crowded rooms don’t bother me.  Maybe I’m weird, but that’s just the way I am.  I should also say that all 3 of the Murray’s LOVE fair food!  We go to theme parks, baseball games or fairs fully prepared to eat our weight in junk food.  This fair was no different.  I spent most of my time sitting in the shade watching the people pass by and eating ice cream/BBQ/funnel cake/root beer float.  Joe, Ella and I had a great time!  I hope Joe’s sister and her family would say the same…although they aren’t as big on crowds as I am.

Sunday our time in Indy came to an end and we headed out to Stop #3…Hershey, PA.  I have lived in DC for 10 ½ years and since day 1 I have been itching to get up to Hershey.  An entire town centered around chocolate…what could possibly be better than that?  We told Ella about Hershey earlier in the summer and since then she has asked every week when we were going to visit.  Her main question was, “Will I be able to use all 5 of my senses…smell the chocolate, see the chocolate, feel the chocolate, taste the chocolate and hear the chocolate?”  We told her that she would definitely be able to use 4 of her senses, but we weren’t sure how she could hear chocolate, although she could hear all about chocolate.

Unfortunately the trip started out with one big mistake!  We decided to try and cut corners on the hotel, so we rented a room at an unnamed chain hotel in Harrisburg, PA (it was about 1/3 the price of a standard hotel room in Hershey).  We arrived around 10:30pm.  Ella was fast asleep in the back seat, so Joe went in to get us checked in.  As he was waiting in line, the woman in front of him was yelling (I mean seriously yelling…including slamming her hand on the counter) about how filthy the room was, there were feces on the floor, the bathroom wasn’t clean, etc.  Joe thought to himself, “This can’t be good.”  Finally he was able to check in, so he came out to get us and we made our way to the room where we would spend the next 3 nights.  To say the hotel was old and run-down would be an understatement.  But it was more than that…the hotel was absolutely disgustingly filthy.  Our plan was to wake up the next morning and take Ella swimming, then come back to the room and change her bandages.  Well, there was no way Ella was putting one toe in that pool, and there was no way we were going to expose her open wounds in that filthy hotel room.  There was trash on the floor (big trash…soda cans, paper, stuff like that), the bathroom hadn’t been swept in who knows how long, and everything just looked gross.  The first thing I did was pull the bed spread completely down so that we weren’t touching it at all.  I went to wash my face and when I grabbed the wash cloth there was a long, dark brown hair hanging off of it.  The bath tub looked like it had never been cleaned.  There were actual brown streaks in it.  I was beyond thankful that I had given Sabrina her flea and tick treatment before the trip because there was no telling what she could have picked up from that room.  And don’t even get me started on the odor in the hallway.  This pregnancy nose couldn’t handle it and I had to hold my breath until we got outside.

By the time we actually got up to the room it was 11 pm.  Ella was fast asleep on the bed (fully dressed) and there was no way we could check out and find another hotel room at that point.  We had to suffer through the night and figure things out in the morning.  Joe and I stayed up until after 1 am discussing all of our options.  I told Joe that I would leave it in his hands and knew that he would make the best decision for our family.  At 6 am Joe got out of bed (after a very restless nights sleep), went and got in the car and headed out to find somewhere else for us to stay.  He returned 2 hours later with a reservation at the Hampton Inn in Hershey.

We couldn’t have gotten out of that nasty hotel fast enough.  I woke Ella up, dressed her as fast as possible, and we loaded the car.  No showers, no free continental breakfast, nothing.  We were gone.  The minute we pulled out of the parking lot we all felt better.  We headed to Hershey and had an awesome breakfast at this adorable restaurant and talked about how that ordeal would soon be a distant memory.  Thank heavens the Hampton Inn was able to let us check in early, so we were able to get into our beautiful, clean, good-smelling, nice, new room and actually relax.  I immediately fell asleep and slept for 2 hours while Joe and Ella watched TV.  Then Joe took Ella to the nice, clean, up-to-date pool while I got things ready for her bath and bandage change.  Even Sabrina was calmer in this hotel.  She knew that it was better than that nasty hotel.  Ella asked, “Are we going to go back to that yucky hotel?”  NO WAY!

After all 3 of us got showered and cleaned up, we decided to head over to Hersheypark for their sunset hours.  Another tid bit of information about me…I LOVE (and I mean LOVE) roller coasters!  The thought of spending all day at a theme park without the ability to ride any of the coasters was a difficult one for me.  Luckily, going for the sunset hours (from 5 pm-10 pm) was perfect.  It was enough time to grab dinner, catch a couple of shows, ride a few rides (for Ella and Joe of course) and get a lay of the land for when we come back sometime in the future (when I’m able to take on each and every one of those roller coasters).  The night ended on a perfect note and our vacation was officially underway.

Tuesday morning we headed out to visit Chocolate World.  Ella had been looking forward to this part of the trip since day 1.  She wanted to make her own chocolate bar.  She even had a name picked out…Ella’s Famous Chocolate!  Ella’s favorite activity of the vacation was riding the ride at Chocolate World that tells all about how to make chocolate and has singing cows.  Ella’s second favorite activity of the trip was making her own chocolate bar.  Hers was dark chocolate with sprinkles and chocolate chips inside and sprinkles on top.  It was really cool to actually follow our chocolate bars down the conveyor belt.  We watched them add the sprinkles and chocolate chips, and watched it get coated in an extra layer of chocolate.  We even got to design our own wrappers.  It was a lot of fun.  We also attended Hershey University where we learned that you actually can hear chocolate…milk chocolate makes a thud when you break it, and dark chocolate makes more of a snap.  We got to sample 5 different kinds of chocolate, which Ella loved (of course).

Tuesday night we headed out to a very special event.  In Lancaster County, PA they have a show called Noah: the Musical.  We had heard great things about the show and decided that it would be a nice outing for the family.  If you’re ever in Lancaster, I highly recommend you go see this show!  It was wonderful!  They had real animals on stage and the acting and singing were terrific.  The coolest part was during the second half when the rain was coming and everyone (audience and all) was in the ark.  The sides of the theatre opened up and there were animals (both real and fake) all along the sides surrounding us.

After the show we headed to Texas Roadhouse for dinner.  My steak was delicious, but the loaded baked sweet potato was awesome!  Mental note…put marshmallows on top of baked sweet potatoes.

Wednesday morning we headed home.  We were sad for our vacation to come to an end, but we were all glad to be home and sleep in our own beds.  That said, we are already planning our next vacation to Hershey, PA.  It was such a fun trip and next time we want to spend more time up there and hopefully spend a whole day at Hersheypark.  Of course the next time we’ll leave Harrisburg out of the trip…ugh.

That was our last trip for the summer.  We still have 2 weeks before Ella starts back to school, and boy is she ready.  Last summer we had a very active and busy summer.  This summer, with a new baby coming and all, I decided to take the opposite approach and not plan too many activities so that she would be able to relax and get ready for 1^st grade.  Well, that plan pretty much backfired on me.  The poor kid has been bored out of her wazoo.  Every morning she wakes up and asks me if we’re going to do something fun today.  This morning we’re going to Target to buy school supplies and maybe go out for a special mommy and Ella lunch.  Last Saturday she had a birthday party of one of her school friends and it was evident that she missed seeing her friends this summer.  I told Joe that next summer I need to be more proactive and actually plan at least 2-3 weeks of camps for her to participate in.  Who knows, maybe we’ll head back to Wyoming for a few weeks.  After all, we will have a new little Murray to show off.

Cincinnati…our annual summer trip

We just got home from another trip to Cincinnati.  It’s always a bit awkward when people tell us to “have fun on our vacation.”  First off, it’s not a vacation.  And second, while it’s always good to go and meet other wonderful EB families and get much needed information from Ella’s doctors, our visits to Cincinnati are not fun.

The more we go to Cincinnati, the more often we go with 2 or 3 specific issues to address, and the rest is just icing on the cake.  This trip our 2 issues were 1) stronger pain meds for bath time, and 2) reevaluating her caloric intake.

Thursday started off with a trip to the dentist.  This actually worked out well because Ella was fasting all morning, so her teeth looked as good as they were going to look.  This was a good visit!  While she does have a small cavity on one tooth, and a couple of other issues they want us to watch, overall they were really pleased with how her mouth looks.  We’re really fortunate because even though Ella’s mouth was among her worst areas when she was on a bottle, now we’re fortunate that we’re able to use a gentle electric tooth brush on her teeth and get things pretty clean.  The dentist was pleased with how things look, so this made us happy.

Next Ella had a Dexa scan.  Nothing too exciting and we won’t know the results for a few weeks.  Basically it’s an x-ray of her spine to see what her bone density is.  The whole thing takes about 1 minute so it’s an easy visit.

Third she had a barium swallow.  She hasn’t had one in 2 years so we weren’t sure what to expect.  Fortunately since she’s always so hungry by the time we get in there, she’s really compliant and drinks the liquid without an issue.  The scariest part for Ella is that this is also an x-ray and she has to lay on an x-ray table with this little “tent” type thing over her.  She handled it like a champ, but it was definitely the most unnerving part for her.  The good news is that from the initial look her throat looks great!  It hasn’t regressed back to what it was 2 years ago and she has no problem swallowing or getting food stuck in her throat.  Again, we won’t have the official results for a few weeks, but as an initial assessment this was the best we could hope for.

We headed downstairs to grab a quick lunch at the cafeteria, then off to get a quick blood draw (if there is such a thing) then headed up to the EB clinic where we spent the next 4 hours sitting in a room meeting with doctor after doctor.

All of the visits were good.  Overall, Ella’s skin looks good right now.  Our biggest issue is that she’s not gaining any weight (again).  We’ve been put on a new regime where I give her an entire avocado (blended of course) at night through her g-tube and in the morning I’m going to start giving her full-fat Greek yogurt.  I am also going to see if I can gradually increase her pump feeds.  I tried to increase them in March (April?) and she didn’t respond very well, so I’m going to go up VERY SLOWLY and see if we can get her stomach stretched out and willing to accept more food.  Let me just say that this whole having a too skinny kid thing is for the birds!  I know there are a lot of parents who constantly worry about their kids being overweight, but I can assure you that the flip side is no picnic.  Joe and I are always praying that baby #2 is BIG!  We have 3 friends who have had babies recently that are over 9 pounds and we’re praying to be in the same category.  I know it sounds crazy, but I told the nutritionist that I don’t want to have to see her about weight gain for 2 kids.

Friday morning Ella had her visit with the Ophthalmologist.  She does not like getting her eyes dilated, so that’s never fun.  We got a new glasses prescription and look forward to picking out some cute new frames.  The bad news is that I need to be more intentional about patching her left eye so that her right eye will get stronger.  It’s hard because I don’t want her to have to wear an eye patch out of the house.  People stare and ask questions all the time as it is.  I don’t want to give them one more reason to stare.

Finally Ella had an ECHO.  This sounds terrible, and it kind of is considering I have to unwrap her torso and she has to lay on a table for an hour.  Unfortunately she has a pretty large wound on her chest which can complicate things.  Fortunately that’s the only wound she has so the rest of her torso is clear.  Once we get things unwrapped and the sonographer gets started, it’s actually one of the more enjoyable visits.  Ella laid in the dark room and watched a movie while Joe and I checked email and facebook, and chatted with each other.

After that we were finished and could move on to the second part of our trip…VACATION!!!