Home again, home again...

On our last day at the Disneyland Resort we slept in again and then had room service deliver our breakfast.  It was so good.  I just have to say that the Disneyland Resort knows how to cook bacon perfectly.  I ate bacon at almost every meal, it was great!

Everyone was packing up so Haley caught on really quick that we were going home.  She was so excited.  She started talking about our cat Shadow.  She wanted to see him.  She wanted to pet him.  She wanted to have a Shadow Lap.

The security line at the John Wayne Airport was much shorter than it had been at PDX.  As my family went through security I was concentrating on helping Haley take off her sandals and put them in a bin along with her purse and her jacket and then I did the same with my things. 

I turned around and looked ahead of us and realized that they had a full body scanner.  I watched as people put there arms up in the air as the scanner circled their bodies.  My Mom turned and gave me a look and I shrugged.  I thought of the different scenerios that could occur, none of them good. 

Haley and I walked closer. 

The TSO smiled and walked toward me and said "Will she be able to put her arms up like this?" and showed me what was expected.

I said "I don't really know, she might get upset." 

He told us to step out of the line and went to talk to the other officers.  It took them quite a while to discuss it and then he came back to us.  He removed a barrier that revealed the "old fashioned" scanner and then walked through it himself.  He motioned for us to follow him.  I told Haley to follow him and she did and then I joined them. 

I thanked him several times.  It was really nice to have him recognize and accommodate her limitations with such care and courtesy.  It actually brings tears to my eyes as I remember it.  My husband was at the end of the line waiting with our stuff.  I helped Haley get her shoes back on and we headed for our gate.

Haley is really a good traveller.  She took to flying like she had been doing it every day of her life.  She did much better than I did.  I had to really focus on not showing my discomfort because I didn't want her to sense that I felt anything was amiss.  I don't hate  flying, but I do get a little claustrophobic and I am never completely comfortable.  I usually spend most of any flight praying. 

Our flight back was good and we made it home without incident.  I didn't feel like cooking (or coming back to reality) yet so we went to Olive Garden for dinner.  We had a nice dinner and then finally returned home.  Haley immediately sat on the couch and asked for Shadow.  We spent the rest of the evening watching TV and petting our cat.

I had a great time in California and I think everyone in my family did as well.

I want to go back.

Just Too Much

Haley was really letting us know how she felt.  She told me she was done when she had stood still waiting for fireworks for twenty minutes after being up for eighteen hours with only a two hour nap.  She told me she was tired over and over again.  She knew when she wanted to stop.  She knew when she needed to rest.  

She was the most sensible of us all.

On the third day of our vacation our family went out for breakfast at the Storyteller Cafe in the Grand Californian Hotel and Spa.  It was really a wonderful meal.  Afterward I texted my brother to find our where his family was.  They were already in the park, just about to get on a ride.  Haley wanted to go back to the hotel room after breakfast.  I told her that we were going to go back to Disneyland.  She started getting upset.  Her Big Sis told her that we might see Winnie the Pooh.  That got her attention.

When we entered the park Haley wanted to ride the Disneyland Railroad again.  We got off of the train at the New Orleans Square and headed straight for The Many Adventures of Winnie the Pooh.  After that we had to hit the shop outside the ride,  Haley just could not pass up a chance to shop.

My Mom really wanted to go for a ride on the sternwheeler The Mark Twain Riverboat so we headed to Frontierland.  My brother and his family weren't there yet so we decided to raft over to Tom Sawyer Island.  Haley did not the like raft.  She did not like the island either.  She was really not liking much anymore.  To her credit the island was dusty and hot and really the only things to do were go in to caves, walk across rickety bridges or climb stairs.  Those are things that Haley does not like, not to mention the idea of getting on a raft to get there and back.  She was not having fun.

Finally my brother and his family were getting close so we got in line for the sternwheeler.  Once we were on the boat Haley and her Big Sis found a place to sit and that is where they stayed for the entire ride.  Since we were so close we all decided that it would be fun to do the Pirates of the Caribbean ride again.  It was just as much fun as the first time.  

Haley's Big Sis had made it her mission to meet Merida from Brave so we split up again.  My husband went with my brother and his family and Haley, Big Sis, my Mom and I headed for Fantasyland.  We made a plan to meet at Mickey's Toontown at 2:00 pm.  Since we were in Fantasyland Haley got to ride the carrousel again and then we went on Pinocchio's Daring Journey.  Haley's Big Sis was still in line and my Mom was hungry so we decided to get a snack and sit down for a while.  We decided to eat at the Troubador Tavern which is just outside the Princess Fantasy Faire, it was still really hot where we chose to sit.  When Haley's Big Sis found us it was time to meet the rest of my family at Toontown.

When we went in to Mickey's Toontown we were all tired and hot.  It seemed to just get hotter as we walked around.  My niece and nephew found a roller coaster and Haley's Big Sis went with them.  We asked Haley if she wanted to ride on the roller coaster.  She shook her head "no."  We asked her if she wanted to sit down, she shook her head "no."  We asked her if she was having fun, she shook her head "no."  I looked at my Mom, "Is it time to go back to the hotel?"  Haley said "Yeah!" and started walking.  

My Mom, my husband and I followed her.  When I caught up to her she said "All done!"  She was so excited.  I knew that she meant it.  My brother and the rest of the family were going to meet us at the hotel when the kids got off of the roller coaster.  My husband had an appointment to get a rental car and my brother was going to take him to the airport so it was a good time to stop for the afternoon.

We caught a ride on the Disneyland Railroad one more time and headed back to the hotel.

Everyone took a nap, but my niece and I, neither one of us can sleep in the daytime. After a couple of hours I woke everyone up and we went to California Pizza Kitchen for dinner.  We thought it would be a nice change of pace for all of us to eat a nice meal together.  It was nice for a while, but I could tell that even with a nap Haley was done.  I called my Mom over and asked her if she really had her heart set on going back to the park.  She told me that she wanted to ride a few more rides, but asked me why I was asking.  I told her that I really couldn't see Haley going back to the park.  I think that she had been having fun, but she was just at her limit.  

Mom agreed to stay at the hotel with Haley.  

It turned out the be the best thing.  When I told Haley she was going back to the hotel she seemed so relieved.  As soon as they were back in the room Haley laid down on the couch.  She wasn't there for very long when she started to fall asleep.  My Mom asked her if she wanted to get her pajamas on and get in bed.  She jumped up and said "Yeah."  

So for the first time in three nights she was in bed by 9:00 pm like she is used to.

Incredible!

We are home from Disneyland.

We left home early, early in the morning.  We caught a very early flight and we were up and at it long before the sun came up.  My husband and I were a little nervous about the security line at the airport, but we didn't need to be.  Haley started off queuing up like a professional, a skill that she would prove to use many times over the next few days.  The flight was uneventful, as they say, and we caught a taxi to our hotel.

We stayed at the Paradise Pier Hotel inside Disneyland Resort.  We were immediately greeted by a statue of Goofy and my brother and his family.  After we checked in and checked our luggage, (and Haley did a little shopping) we were off to the park.  Since it was the first time at Disneyland for at least half of our group we started there.  As we entered the park the first thing Haley noticed was the train.  We decided that that would be our first "ride" at Disneyland.  We got right on the train and I pulled out the sunscreen.  Everyone doused themselves in sunscreen as we took in the surroundings from the rails.

We took the complete loop around Disneyland and ended up right back at the entrance.  As we stepped off of the train the first thing that we noticed was one of Haley's favorite characters, Cruella DeVil!  We had to get a picture taken with her.  Then, because we had been up since 3:15 am we decided that we needed to eat lunch.  We ate at the Carnation Cafe and it was delicious.

We decided to start at Adventureland and went on the Jungle Cruise.  Haley wasn't too sure about getting into a boat, but she liked it.  I learned pretty quickly that I had to be careful of my reactions.  Haley's Big Sis and I were screaming and jumping at every little thing and I could tell that Haley was getting more nervous by the second.  I started laughing and saying things like "How fun!" and "Isn't that silly?" just to lighten the mood. 

Haley really enjoyed Tarzan's Tree House.  I wasn't sure how she would take all of those steps up and down, but she did really well.  The payoff was that she got to see the characters that she loves up close and full size.  She really liked it.

After that we headed into New Orleans Square, remembering to curb my reactions became really important when we went into the Pirates of the Caribbean ride, I had forgotten how dark it was in there.  It got really dark and we dropped quite rapidly and I screamed and then I remembered to laugh and say "Fun!" and then Haley did too.  At the end of that ride Haley turned to me and said "Incredible."

The Haunted Mansion was a little tricky.  We had to step in to moving cars.  I wasn't sure how we would do it.  Haley's Big Sis went first and just asked the operator if they could stop the ride or slow it down for her sister.  They did and it was no problem.  There were a few rides throughout the parks that were like that and the Cast Members were very accomodating.

Haley really had no trouble with the lines throughout the whole week.  I had done some research before we left and was prepared to ask for a Guest Assistance Pass, but we never went looking for one.  Every time we needed a ride to be slowed down or needed a little extra time to get in a car or out of a car we were allowed that.  I must say that Disneyland and every one of it's Cast Members are amazing.  They are there to make sure you have a magical time and we did.

We decided to hop on the Disneyland train again and head over to Fantasyland.  Haley's Big Sis had one goal, she wanted to meet all of the princesses (and female characters) from her favorite movies that she could.  She made it her mission to find Rapunzel from Tangled.  It took us a while to track her down and when we finally did there was a good long wait.  I decided that Haley wouldn't be into that and we headed off to ride King Arthur's Carrousel.  Haley really likes carrousels and this one was centrally located so that we could see most of Fantasyland and keep tabs on her sister and the rest of our family.

They were still in line when we got off of that ride so then we got in line for Dumbo the Flying Elephant.  We had to wait in the sun for that one, but Haley held up pretty well.  When we got close they handed Haley a "magic feather" which was made of wood or plastic and was black.  We were supposed to give it to the Cast Member that ran the ride, I think they used them to count how many people got on the ride.  Haley held on to it until we got into the "flying Dumbo" and as I looked down to fasten our seat belt she hucked it into the water.  I gasped.  The Cast Member came for our feather and I apologized and told her what Haley had done.  She just smiled and kept walking.

Before we had left for Disneyland I suggested that we take afternoon breaks and after everyone had met Rapunzel and Flynn Rider they thought it was time for one.  We decided we wanted to ride the monorail to Downtown Disney and walk back to the hotel from there.  Once in the hotel everyone rested.  Haley found her spot on the couch in our room and fell asleep.  Actually everyone slept except for me.  After awhile I woke everyone up and we went swimming at the pool.  After that my brother got us Subway sandwiches that we ate in our rooms.  Then we were ready for more.  We rode the monorail back in to the park.

Since we were in Tomorrowland we rode the Finding Nemo Submarine Voyage, which turned out to be very cool.  We rode cars in Autopia and then split up in to two groups, those that wanted to ride "thrill rides" and those that didn't.  Those that didn't turned out to be me, my Mom, my Husband and Haley.  We headed back to Fantasyland.  It was starting to cool down and the line for it's a small world wasn't too bad so that is where we headed.  Haley loved that ride.  She still seemed cautious about the whole boat idea, but once we were inside she sang the song at the top of her lungs the entire ride.

After that we rode the Casey Jr. Circus Train.  I think this had to be one of the highlights for Haley.  She has been watching Dumbo a lot lately and she loved hearing the song that she is used to.  She loved it when Casey Jr. chugged up the hill saying "I think I can, I think I can..."  It was dark when we got off of that ride and we decided to check out a spot to watch the fireworks from.  My Mom was most excited about seeing the Disneyland fire works.

We walked all around the square in front of the Castle which was already full of people.  We found ourselves a spot and waited.  After about fifteen minutes of that Haley said "I'm done." and started walking away from us.  I caught up with her and coaxed her back saying that the Boom Bang was going to start soon.  We stood there a little longer and then she started to act like she was going to leave again.  I sat down and she sat on my lap.  Pretty soon a cast member with a flashlight told me there was no sitting.  We stood up again and luckily the fireworks started right after that.  The fireworks show was amazing!  After that we tried in vain to find my brother and the others.  I soon realized that the little group that I was with was done for the night and we headed back to the hotel.

It had been a full day.

Mixed Emotions

Thursday afternoon Haley came home on the bus and gave me a note from her teacher.

Haley has had a runny nose for the second half of the day.  We have had half of our class out with the seasonal bug. Otherwise, today went well.  Haley is finally adjusting to our new situation over here.  Kids really like her, as does all of our staff in both programs  We are beginning to track goals after doing extensive work at building the class... I hope all is well at home.

I kind of knew that was going to happen.  Haley's Big Sis had been sick the week before and then I got a mild version of it on the weekend.  It is really hard when Haley gets sick.  She can't tell me how she feels so I just have to guess.  It sort of helped that I already had it, I know how I felt.  I re-stocked our medicine cabinet and prepared myself for the worst.

We didn't get much sleep that night.

Haley was very stuffy and she got up to have me help her blow her nose approximately once an hour.  In the middle of the night it was time to give her more medicine.  After that I think we got a couple of hours of uninterrupted sleep.

It is better during the day.  She has learned to get herself a Kleenex and blow her nose on her own.  I guess she doesn't do that at night because she is a little groggy.  She stayed home from school and took it easy.

Last night we slept all night. 

I woke up and looked at the clock.  I was amazed and relieved.  Then another feeling swept over me.  Worry.  Dread.  Fear.

Bear with me, I will explain.

Haley gets up at least once a night and comes in to our room and then I get up and put her back in bed and cover her up.  Usually when she climbs back in bed the sheet and blanket and quilt are a mess.  They are either at one side of the bed or the other or clear down at the foot of the bed.  So I assume that she kicks off the covers, gets cold, and then doesn't know how to cover herself back up.

There was a time when she was small and I was less patient that I just told her to go back to bed.  I vaguely remember that.  Some nights she did leave my room.  Whether she actually got back in bed was debatable.  She sometimes played computer.  Sometimes watched TV.  Sometimes played with her toys.  Sometimes fell asleep on the couch.  Other times she didn't leave my room.  She just laid down on the floor by my bed and fell back asleep.

That was a long time ago.

It is kind of weird to think about it now.  I have been putting her back in bed like this for a while.  I don't know how long, or when it started, but it is normal.  I think I have only slept through the night a handful of times since she was born.

And on those occasions I do feel more rested, but I also get this feeling when I wake up.

"She didn't wake me up in the middle of the night.  What if she isn't sleeping?  What if she - wow, I can't even type this - died."

I have no reason to think that she could.  It's crazy.  It just comes over me.  And when it does it is paralyzing.  What would I do without her?  I don't think I could function.  Really.

I lay there with my heart pounding.  Then I listen.  Maybe I will hear some movement coming from her room.  Sometimes I do and then I am OK.  If I don't I get up and check on her.

I know that mothers of small babies do that all of the time.  I did. 

I still do.

She was fine.  She was downstairs on the computer.  I gave her a kiss on the forehead and said "You slept through the night.  Did it feel good to have a nice long sleep?"

"Yeah." she said.

Then I sat down on the couch with my laptop and saw this. 

Where's Molly?  (watch the video)

I often say that we are lucky.  I say that Haley is lucky that we live in a time where there are programs for kids like her.  Where there are medical advancements.  What if she had been born in another time.  Would she have been born?  Would she have developed like she has?  What if we didn't have Early Intervention, The ARC, her therapies, her pre-school, her life skills classes? 

What if we didn't have any support?

We have a long way to go, but we have come so far.  I am glad. 

I have her.


We all do.

If my child didn't have special needs...

If my child didn't have special needs, I wouldn't celebrate every tiny little accomplishment.  I would be proud of her, but I wouldn't truly celebrate like I do.

If my child didn't have special needs,  I wouldn't notice the accomplishments of others.  I feel like my radar is on, all of the time.

If my child didn't have special needs, her habits would be more annoying than endearing.

If my child didn't have special needs, I wouldn't appreciate the differences between my two children quite as much.  I think I would notice them, but they wouldn't bring me as much joy.

If my child didn't have special needs,  I would be different.  I would be more selfish, more self-centered, more career oriented, more impatient, more demanding, more short-tempered.  I know this because that is how I was before I had her.

If my child didn't have special needs, I wouldn't love her any more than I already do.  I love that little girl with all my heart and all my strength.

Thank you Ellen for the inspiration.