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Attending Church with an Individual with Special Needs

Posted in Everyday, tagged , , , , , on February 25, 2013 | 5 Comments »

Some days Skylar really struggles with going to church.  Yesterday, as I sat in worship, I got to thinking about why it is often difficult to take an individual with special needs to church.

It is difficult to explain the fears that many parents of special needs children have in taking their children into a worship service.  I hear from many families that they gave up going to church a long time ago!

Why is that?  Well, let me share with you my own thoughts on this matter.  Let me start off by saying that I am not speaking for all families that have a child with special needs, just MY family!  So here we go!

1)  PEOPLE STARE

This is a biggie!  I can’t even begin to tell you about the stares that we get.  You would think that it would be better in church, but nope..it isn’t!  This seriously saddens me!  I understand people’s curiosity, but for the love of all that’s holy, quit staring!  This wasn’t as much of an issue with us when Skylar was younger, but as she has grown into her teenage body, it has become more of an issue.  When you have a younger child in service who is a bit restless people don’t even think twice about it, but when you have a child who is taller than her mom and the age of a young high schooler, people are staring when she is hugging me tightly, holding my hand, rubbing her face against mine for that deep pressure input, or moving “a bit more than she should” during worship.  You know what?  If you can’t move during worship, when can you move?  One thing I won’t ever do is tell Skylar that she can’t dance during worship or tell her that she is singing too loud!  That is how she worships and I will never try to change that!  

2)  PEOPLE ARE JUDGEMENTAL

We do make Skylar stand and join us during the worship segment of church.  Some days she adamantly says “I am NOT singing with you today!” but we still ask her to stand and read the words on the screen.  

When it comes time for the message, we allow Skylar to use her i-pad (with the volume completely silenced). Some of you might think that is wrong and that is ok, but until you’ve walked a mile (or a quarter of a mile for that matter) in my shoes, then please keep your judgements and opinions to yourself!  This keeps Skylar happy and entertained so that Chris and I can listen to the sermon and be encouraged by God’s word!   My guess is that most people see Skylar on her i-pad, think that she is some teen that is bored, make a snap judgement about our parenting abilities, and then give us dirty looks, roll their eyes, or make comments loud enough for us to hear them.  Guess what?  When this happens, most people would be so hurt and angry that they wouldn’t darken the doorstep of your church ever again!  But oh no…not me!  I have been known to turn around and say “Just so you know, my child has autism!” which in turn usually leads to a horrified expression and something along the lines of “I’m so sorry!  I had no idea!”.  My point is not to shame people, even though that is often what they are trying to do to me, instead it is to educate people.  I hope that you will think twice before making snap judgements.  Church should be a safe place for people, instead many people feel more judged at church than any other place they go.  

 

3)  MOST CHURCHES DON’T HAVE PROGRAMS FOR INDIVIDUALS WITH SPECIAL NEEDS

When we meet other families with children who have autism and they find out we go to church, one of the first questions they ask is “Does your church have a special needs program?”  None of the churches that we have attended here in Prescott have had such a program.  This is something that we, as a church, need to step up and do something about.  This would be such an amazing ministry and blessing to families in our community!

Several months ago we were talking to some friends of ours that are church planters, who are very aware of Skylar’s needs.  The pastor said “Julie, as a church body, we are failing your family!”  I appreciated his candor.  He then went on to ask a question that I had never been asked in over 10 years of having a child with special needs.  ”What can we do as a church to serve families and individuals with special needs?”  Here are my responses:

-Churches need a buddy system!  We need individuals who will step up and hang out 1 on 1 with our kiddos during service.  Most of the time, most churches only have childcare/Sunday School for children through 5th grade.  Even though Skylar is in 8th grade, she wants to be with children that age.  Why not let her attend those classes?  If she had a buddy, whether it be an adult or an older member of the youth group, she could enjoy their lesson and be happy in that classroom.  The buddy doesn’t have to be the same individual!  Imagine if 4 people stepped up and said “I’ll take one week a month and hang out with Skylar!”  That would be awesome and I can guarantee you that not only would they be a blessing to us, but Skylar would be a blessing to them.  What a great thing to be teaching our youth!

-Churches need to come alongside families that have individuals with special needs and get to know them!  Many of us have learned more about patience, love, forgiveness, mercy, and grace than we could have ever imagined by parenting a child with special needs.  I, for one, know that my faith has grown by leaps and bounds this past 11 years.

So there you have it!  These are the reasons that we often find it tough to take Skylar to church. I pray that you will be open to getting to know individuals with special needs at your church!  I am confident that they will bless you far beyond anything you ever imagined.  Their joy is contagious!

This past Sunday was just like most Sundays!   Skylar woke up in one of “those” moods.  She immediately started saying she didn’t want to go to church. Unfortunately, it set my mood for the morning and I was just dreading going into service.  As I stood during the first worship song, Skylar LOUDLY whispered “I’m NOT singing with you today mom!”  I tried to clear my mind of the stress and sadness and I immediately prayed that the Lord would comfort me.  I also asked Him to bless sweet Skylar through the music.  I remember questioning whether or not I was doing the right thing by continually forcing her to come to church and wondering if she gets anything out of it.  The third song we sang was a mix of an older worship song and the chorus to Hallelujah (Skylar calls it the Shrek song as it was sung in the first Shrek movie).  As I closed my eyes to focus on the chorus, I suddenly heard Skylar’s sweet soprano voice carry over most of the voices around us.  My heart was overwhelmed with joy at the sound of her praising God!  As a tear rolled down my cheek, I thanked God for such an immediate answer to prayer, for comforting me, and for Skylar, who is such an amazing blessing to our family!  I truly believe that the Lord gave me a glimpse of what hearing the angels singing will be like!  

Whatever you do today, make it great!

JuJu

 

 

 

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Dear Ann Coulter

Posted in Everyday, tagged , , , , , , on October 23, 2012 | 8 Comments »

Dear Ann Coulter,

I’ve long thought that even though we, as Americans, are politically divided, that underneath it all, we are all still human beings.  Human beings that want what is best for this country. Human beings that care for others. Well, that thought ended last night!  I can’t even begin to put into words my utter disappointment when you took to Twitter and called the president a “retard”.  Really?

When you use that word,  you hurt thousands of individuals with disabilities.  One of those individuals is my sweet daughter.  We were told over 10 years ago that she had “mental retardation”.  These past 10 years she has taught us more than we could ever teach her.  She has taught us patience, joy, encouragement, forgiveness, hope, acceptance, and unconditional love.

Ann, our daughter is NOT a joke!  She is more than you could ever aspire to be! Open your eyes and your heart.  And for the love of all that’s holy, please think BEFORE  you open your mouth or pull out your smart phone.  Think of our sweet girl and know that you hurt her, and all those like her, with your insensitive and hateful words!

Ann, meet Skylar!  You could learn a LOT from her!

Signed,

JuJu ( A mother who will stop at nothing to protect her children!)

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It Works! It Really Does!

Posted in Everyday, Healthy Living, It Works!, tagged , , , , , , , on October 9, 2012 | Leave a Comment »

I’ve spoken with many of you who want to live a healthier, more active lifestyle.  As a parent I desire to live a long time to see my children grow up.  Those of you who have children with special needs understand the need to live “forever”!  My biggest fear is leaving my children alone in this world!  I know that this is a common fear in our community.

Some of you may know that I signed on to be a distributor with It Works! Global back in April.  I have been quietly using their products for the past 6 months. I am just not one to shove product or my beliefs down anyone’s throat!  I figured that I needed to take the supplements and use the wraps so that I could show and tell how these products have worked for me. When Chris got home in August we agreed that we would start taking their vitamins and supplements together and see how we felt.   The Dynamic Duo (It’s Vital and Greens) pictured below has truly changed how I feel!  No more constant sugar cravings!  And the best part….no mid-afternoon nap to get me through the day!

So if you would like to read more about the It Works! products, Jaima over at Ring Around the Rosies Blog wrote a review for me this morning!  She strives to live a healthy, natural lifestyle.  I sent her some products last month and today she is sharing how they have worked for her!

You can read her review here!

I also have a Facebook page for my business.  It is:

It Works! Skinny Wraps-JuJu (Click here to go straight to my Facebook page and “LIKE” it!)

Chris and I are currently working on a Health Challenge that will motivate others to live a healthier lifestyle.  We would love to have you join us!

I have been so encouraged already by those of you who are loyal customers of mine who have written, called, & texted me to say how much It Works! has worked for you!  Our Ultimate Body Applicator (wrap) is the hottest thing on the market!

We have a wonderful Loyal Customer program that offers up to a 45% discount on products!

You can visit my business site by clicking here!  There are so many wonderful, natural products to help you get started on a healthier path!

Thanks for letting me share about how we are trying to live a healthier lifestyle!  We want to do everything on our end to be around a VERY long time for our precious girls!

Make it great!

JuJu

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My Favorite Things About Homeschooling (So Far)

Posted in Homeschooling, tagged , , , , on September 14, 2012 | 4 Comments »

Last week I shared a post about what I’ve learned since starting to homeschool with a virtual academy.  If you missed that post you can read it HERE.   We are now in our 7th week with homeschooling and we are definitely into a better groove.  We still have days that are tougher than others, but overall we are doing well!  When I get overwhelmed or discouraged, I like to focus on the positives of our situation.  It makes me feel so thankful for where we have been and how far we have come. So,  today I want to share with you my favorite things about homeschooling so far.

1)  SEEING THAT “LIGHT BULB” MOMENT

-There is nothing better than witnessing the moment when your child “gets it”!  I have been so blessed to be able to witness many light bulb moments since starting school 7 weeks ago.  I have found that most of these moments for my girls happen during math.  It truly excites me to know that I’m a part of my child’s learning!

2)  SEEING THE EXCITEMENT ON THE GIRLS’ FACES WHEN THEY DO WELL

-In the program that we are using, the girls typically have a short assessment at the end of each lesson.  It is usually anywhere between 6 -10 questions and tests whether the girls have captured the information from their lesson.  Immediately upon completing the assessment, a screen pops up with their score.  I absolutely love the reactions that we see when they get 100%.

Skylar squeals with excitement and screams “I got 100!”.

Hailey usually says “I totally ROCKED that lesson!” or “Oh yea, I am SO smart!”.  I love hearing those words!

3)  SEEING THE GIRLS APPLY WHAT WE HAVE LEARNED TO OUR EVERYDAY LIVES

-Pretty early on we did a science lesson on the scientific process.  You know….observations, forming a hypothesis, testing, dependent and independent variables, conclusions, etc.  Well, a few days following our lesson Hailey opened the refrigerator and said “If I don’t put these tacos in the fridge, then they will go bad!  How’s that for a hypothesis mom?”  I loved it!  Since then, she has formed MANY hypotheses!

-We also did a lesson in history/geography on longitudes and latitudes.  Chris and I have been watching reruns of the show Alias.  In one of the episodes they were using a GPS device and the longitude and latitude coordinates popped up on the screen.  Hailey was walking by and quickly said “Hey!  Did you see that?  They just showed the longitude and latitude of where they are.  Now they will be able to be rescued!  That’s cool!”

I truly love these moments!  They may seem little to some, but they are HUGE to us!  I also love that I have been able to share these moments with other parents that have children with special needs and that they rejoice with us.  One thing having 2 girls on the autism spectrum has taught me is:

EACH AND EVERY VICTORY IS WORTH CELEBRATING!

4)  NO MORE “MORNING RUSH”

-This was my least favorite thing about getting the girls up and ready to go to school each day.  Both of our girls move at their own paces and trying to get them to move faster would only lead to frustration, tears, and bad attitudes.  By the time I got the girls dropped off at school I felt like I needed to come back home and take a nap. Chris even mentioned this week how much he doesn’t miss the morning chaos.  He said that the absolute chaos often sent him to work in a bad mood and it would take half his morning to really relax and be settled.

5)  FLEXIBILITY

-We are pretty routined, but it is nice to know that we can pick up and go when needed.  My sister moved this past week and we went down to Phoenix on Monday and Tuesday and helped her unpack.  The girls worked solely on Math and Language. Hailey also worked on Spanish.  I knew that this would most likely stack the end of our week heavier, but it allowed us to help my sister and her family.  We also got to see my niece swim in her high school swim meet.

-We don’t have to follow a strict schedule each day.  As long as we complete all our lessons for the week (5 Math, 5 Literature, 5 History, 5 Spanish, 3 Science, and 3 Art) we are good.  If we choose to do all 5 Math lessons on Monday, that is fine! This week we did only Math and Language on Monday and Tuesday because those are the subjects that the girls can work on a bit better on their own.  That allowed me to help my sister a bit more.

So these are my 5 favorite things about homeschooling so far.  I look forward to adding more things to this list as time goes on.

Do you homeschool?  I’d love to hear your favorite things about homeschooling! Please share them with me in the comments.

Hope you all have a great weekend!

Make it great!

JuJu

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Skylar’s New Wheels!

Posted in Everyday, tagged , , , , , on July 9, 2012 | 4 Comments »

I am so excited to share with all of you that Skylar finally got an adaptive bike! Let me share how Skylar came to be riding this fancy set of wheels!

Many of you might recall that I shared here on my blog several months back about how we were trying to raise funds for an adaptive bicycle for Skylar.  The bike we were originally looking at was priced at about $1,600.  Shortly after writing that post I received an e-mail from a couple, Henry and Yvonne, who were in a Bible study with my parents when they lived in Virginia years ago.  Both Henry and Yvonne are avid bikers and they wanted to come alongside us and help us pick out the perfect bike for Skylar.  We kept in touch over the next several months via e-mail.

Over the course of those few months my mom did a jewelry fundraiser and we sold autism bracelets to help raise the funds for the bike.  We also had multiple people who donated money to her bike fund as well.  We had raised a significant amount of money and were encouraged until the beginning of May, when Skylar’s physical therapist actually priced out the specific bike Skylar needed and it was over $2,200. That definitely took the wind out of our sails!  After seeing the cost of that, I told Chris that we needed to specifically pray that God would provide exactly what we needed!

A couple of weeks later while I was in Tucson, I received another e-mail from Henry and Yvonne.  Henry told me about a gentleman, Bill, that he had read about on one of the biking message boards he regularly reads.  You see, Bill has a passion for biking and a heart for individuals with special needs.  Bill had already built bikes for individuals with Autism, Down Sydrome, and Cerebral Palsy.  The best part was that Bill lived in the Phoenix area which put us in pretty close proximity to him.

Henry asked if I would be interested in connecting with Bill to see if he could build a bike for Skylar.  Of course I said “YES!!!” and within hours I had already heard from Bill and set up a meeting for the following week.  I actually sent a copy of what the physical therapist had stated she needed and information about Skylar’s cognitive delays, low muscle tone, and issues she has with her feet.  I was overjoyed and so encouraged when he wrote back and said that he would be able to build a bike for her and for a fraction of the price!

It took about 3 weeks for the bike to be built and we were so excited when we got word that it was ready for pick-up!  The pictures below are of Skylar and Bill, who is also known as “Yoda”, and the first time she got to ride her bike out in front of his house.

I can not begin to describe to you the range of emotions that I felt as I watched her peddle her new bike around the cul de sac.  Her huge smile made my heart burst!  I loved hearing her words as she rode her bike.

Look guys! I’m riding a bicycle!

I totally love my new bike!

and

Thank you Mr. Yoda for building me this bike!  It is perfect!

We left the next morning for Albuquerque and were thrilled to take the bike with us so that my parents could watch her ride.  I asked my sweet friend Sara, who was my co-worker in the health office when I was the school nurse, if she would come up and snap some pictures of Skylar and her new wheels!  Sara just started her own photography business, Two Brunos Photography, and I have been an admirer of her photography skills for years!  If you live in the Albuquerque/Rio Rancho/Santa Fe area and want to have pictures taken, check her out!  You won’t be sorry!

I’m so excited to share some of my favorite photos that Sara took with you.

And this is my most favorite!  She was on her way back to the car and singing her heart out!  It truly was just the most perfect moment!

I am thankful for so many things!

I am thankful for Henry and Yvonne who put us in touch with Bill!

I am thankful for Bill Irvine who made our dream of getting Skylar an adaptive bike a reality!  Thank you just doesn’t seem like enough!

I am thankful for my friend Amy, from Ohio, who spread the word about our efforts! Her family and friends were so generous in their donations!

I am thankful for so many of you who bought autism bracelets and other jewelry to help us raise the funds for the bike!  And for those of you who sent money with a simple note “I want to help Skylar!”

I am so thankful for my mom and dad who continue to pour their love and energy into this sweet girl who has brought us so much joy!

I am so thankful for Sara, who gave her time and talents to capture these pictures of Skylar and her new wheels!  You can like her page on Facebook here!

and

I am so thankful for all of you who continue to pray for Skylar and Hailey and the long journey that we have ahead of us!  We couldn’t get through without all of you and those prayers!

If you would like to get in touch with Bill “Yoda” Irvine regarding having a bicycle built and for pricing information, please shoot me an email and I can send you his information.  You can do so by either clicking the link in the upper right-hand corner of my blog or sending me a message to iamjujublog (at) yahoo (dot) com.

As always, I’m happy to answer and questions you might have.  You can either leave them in the comment section or send me an email.

I hope you have a wonderful week!

Make it great!

JuJu

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Differently Beautiful!

Posted in Everyday, tagged , , on May 3, 2012 | 2 Comments »

A few weeks ago I was down in Phoenix for Skylar’s physical therapy evaluation. Afterwards, we met up with my sister at her favorite local hangout, Luci’s.  Before we headed out for the 2 hour drive home I ran to use the restroom. The beautiful apple artwork above was hanging on the wall.  As soon as I saw it, I immediately had so many thoughts start running through my head.  I ran back to the table & grabbed my phone so that I could snap a picture. Oh yes I did!

Many of you might ask “What is so special about these apples?”

Well, I immediately saw my girls in these apples!

-They are both different in many ways from many of the people we come in contact with, but they are absolutely beautiful souls!

-Unfortunately, many people see individuals on the spectrum (or any individual with special needs) as “less than” other human beings.  They feel a sense of pity.  When I look at the picture above I think how the red apple is different from the rest, but it is still an apple!  My girls are still beautiful, unique human beings!  They aren’t “less than” anyone!

-Different isn’t bad! Different is different! Sometimes it is hard, but many times it is beautiful!

As I drove home I thanked the Lord for the beautiful reminder of how differently beautiful my sweet girls are!  It was just what I needed!

Thanks for letting me share!

JuJu

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Another Giveaway from Goosie Cards!

Posted in Giveaways, tagged , , , , , , on April 22, 2012 | 2 Comments »

I was so thrilled when Jennifer, the owner of Goosie Cards, contacted me to do another giveaway!  I LOVE these cards and all the possible ways to use them.  These are the cards that I gave my 2 y/o niece for Christmas.  Her’s was an alphabet set.

Since gifting them I have thought of multiple ways to use them for my girls.  As most of you know, my girls are 11 and 13.  I knew I didn’t need to make them cards to learn their alphabets, but I knew that I wanted to make them a set to help them stay on task in the mornings. Both of them need multiple cues to stay on task and I figured that visual cues would be so much better than the constant verbal cues that only lead to frustration.  No matter how many times I ask them to do something, I can walk in the room and there they sit, looking dazed and confused.  I’m so tired of saying “Did you brush your hair?  Did you brush your teeth?  Did you make your bed? etc., etc., etc.”!!!! Mornings are difficult for us!

So I decided to make a set of cards for both of the girls with personalized pictures. They will include:  pick out your clothes, take a shower, brush your teeth, brush your hair, make your bed,  and put on your shoes.  They will be hole punched, on a ring, & hang on a hook.  I had really hoped to have the cards to show you, but alas, this month has been so busy and I just haven’t had a chance to order them yet. I’ve taken the pictures, now I just need to upload them & add the text.

Check out the Goosie Cards website for some great new card ideas!  These cards are really great for kids of all ages!  Alphabet cards, family cards, cards for therapy, etc. These would be great for speech therapists and behavioral therapists!

Leave me a comment, here on the blog, to be entered into the drawing for a set of 10 cards!  This giveaway is open to everyone, including my international friends!

“Like” Goosie Cards on Facebook here and follow Goosie Cards on Twitter here to stay up to date on all their specials, giveaways, and sales.

This giveaway will close this Saturday, April 28th at midnight Eastern time.

Good luck to all of you!

Have a great week!

JuJu

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The Talent Show!

Posted in Everyday, tagged , , , on April 16, 2012 | 5 Comments »

Last Thursday Skylar performed in her middle school talent show.  I was so proud of her when she came home and told us that she wanted to try-out.  She loves to sing. She sings a LOT!  Most days she comes down the hill from school singing away.  That is usually an indicator that she is in a good mood.

I wanted to share with you why I am so proud of Skylar’s performance in the talent show.  Ten years ago I sat in a small room with a developmental pediatrician who told me that Skylar most likely would never speak.  He also told me that we would probably need to institutionalize her when she was a teenager and that she would be lucky if she could ever get a job bagging groceries when she was older.  I remember sitting in that office and saying “Dr. S, thank you for your time, but you REALLY need to work on your bedside manner….it SUCKS!”

I’m so thankful that I knew enough not to listen to that doctor and his very bleak outlook on Skylar’s life.  About a year later, Skylar found her voice and she has been using it to sing ever since!  Never let anyone tell you what your child can or can’t do!!

Below is the recording of her performance last week.  She sang ‘Free to Be Me’ by Francesca Battistelli. She sang this same song in her 5th grade talent show, but this year as the music started & she started to sing, we were surprised to see her doing movements to the song.  That was totally new! I got so tickled and couldn’t stop smiling & giggling.  My first thought was “That is AWESOME!”  I love her sweet spirit, her confidence, & her absolute ability to make people smile!  It doesn’t get any better than that!

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Hey Girl!

Posted in Hey Girl!, tagged , , , , on March 27, 2012 | Leave a Comment »

I’m sure that many of you have seen the various “Hey Girl” memes about Ryan Gosling that have been floating around the internet for a long time.  A few months ago, Sunday over at Adventures in Extreme Parenthood developed her own Special Needs Ryan Gosling series.  When I first read them I was rolling on the floor laughing.  It is such a funny series & it was so funny to see her take issues that we as parents in the special needs community, deal with on a daily (sometimes hourly) basis and put a positive & EXTREMELY  humorous spin on it!  Those of you who know our family know that we try to deal with a lot of our difficult times with humor.

So this morning as I was surfing the internet, I came across a picture of Ryan Gosling.  I immediately knew what I wanted to do with it.  Sunday usually runs her series & invites others to link up on Friday, but that is when I do my No Filter Friday series.  So I’m going to share it today.  Hope it gives you a good laugh!

Be sure to check out Special Needs Ryan Gosling over on Sunday’s blog each Friday!  It is HILARIOUS!

Hope you are having a wonderful day!

Make it great!

JuJu

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Disneyland Day 3

Posted in Everyday, tagged , , on March 15, 2012 | 1 Comment »

Yesterday we spent time in both parks riding the rides we either missed or wanted to ride again.  We of course had to ride both Soarin’ Over California & Big Thunder Mountain Railroad again (and again!).  Those were definitely our 2 favorite rides of the trip.  Chris and the girls also rode California Screamin’ and had a blast!  Chris is in the very back of the coaster and you can see Hailey on the very right side of the picture.  Skylar was behind Hailey & I couldn’t see her from the pier.

Hailey begged for a turkey leg so Chris obliged.  It was almost bigger than her head! I laughed at how angry she looks!

Hailey had a couple of bites & then Skylar got ahold of it & she devoured the rest.

We made an impromptu trip to the beach to watch the sunset & let the girls run around.  It was super chilly with the wind coming off the water.  As soon as we got there Hailey saw the seagulls & took off after them.  The action shots tell it all.

I love that she stopped, flashed a smile, laughed, & then kept on running!

Oh to have even a quarter of her energy would be awesome!

It was so cold, but the girls loved running all over the beach.

After our trip to the beach we went back to the hotel.  Chris went out to grab some food because the food court in the hotel closed early.  While he was gone, Hailey went to blow her nose and came out of the bathroom and said the following:

I’d like to know what kind of tissues the Hilton uses!  They are TERRIBLE!  Also….the beds aren’t comfortable, the pillows sink in, the restaurants close too early AND our room is FREEZING!  Oh yeah, the channels on the TV are totally out of order!

I immediately started laughing as I thought her little rant was hilarious!  She gave me the most horrified look & then burst into tears!  I was shocked!  She then said “I can’t believe you are laughing at me mom!  I am SO upset!”

And that ladies & gentlemen is when you know that you have officially had “too much fun” and that it is time to head home.

Thank goodness we will be home this evening with good tissues, her own bed, pillows that don’t sink in, a thermostat we can control, & a TV with the channels in the order she knows and loves.  PHEW!

Have a great day!

JuJu

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