Jacob Update

I have struggled with writing this post, but as always for me writing is how I cope and so I will write and share because I need to stop crying.

Three weeks ago Jacob went for his physical.  My goal was to talk about some of his learning challenges and to talk about seeing a specialist for some educational evaluations.  The appointment changed in an instant when the Dr listened intently to Jacob's heart for more than 3 minutes.  I knew in my mommy gut something was wrong, but this wasn't our typical pediatrician  we were seeing and so I assumed the doctor was maybe just being extra cautious.  Unfortunately, after a long listen the doctor explained that Jacob had a significant heart murmur and that we needed to see a cardiologist.  As I panicked, and tried to hold it together for Jacob, the receptionist at the desk reassured me that he would get hold of the Cardiologist ASAP and we would have answers.

My boys has struggled through so much this year:

• Lyme Disease
• Significant learning issues
• Drastic changes in his behavior
• Changes in his ability to write and perform small motor tasks

How is it possible that there was now a problem with his heart?

Within 48 hours we were in the Cardiologists office and and EKG and an Echocardiogram were performed and it was determined that Jacob has a Mitro valve prolapse along with a bulge in his aortic root.  Putting these 2 issues together there is a strong likelihood that Jacob will be dealing with a diagnosis of Marfan Syndrome.  The Dr gave us names of Genetic Cardiologists to see in Boston or NYC and said that this was the next step for us.  We need to have a definitive diagnosis made so that we can know what to expect long term for Jacob, and that we needed a specific type of specialist to help with the diagnosis.  

Jacob, an avid football player, was told in the office that there would be no more contact sports because if he is hit in his heart it could be fatal or he could require immediate heart surgery.  That was all Jacob heard and all I heard because Jacob lives all year to get to football season.  He is not the best football player on the planet, but it is where he feels like part of a team and it is where he is the most alive.  With all of his struggles it was one more thing that he was losing.

As we left the office I carried my sobbing 9 year old to the car as I tried my best to hold back my tears.  My mom was with us, and I think it may have been one of the hardest moments for the 2 of us.  She could not comfort me, and she could not help Jacob.  We were both devastated.

I have done my best to simply ignore this potential new challenge as honestly it is putting me over my limits.  I don't know how to cope with one more challenge.  Between school challenges for all 3 boys, IEP planning, and daily struggles of life, this was becoming too much to juggle.

I told Jacob's teacher and the school nurse of the new diagnosis as I dropped him off at school and the limitations on Jacob for contact sports and then I just knuckled down and pushed ahead.

Having children with so much going on, and balancing it all is lonely and alienating.  I am fighting with the insurance company to get permission to go to Boston.  I am working to ensure that Jacob is safe and feels ok about not playing football.  I am finding child care because our summer plans changed after the heart issues were found.

All week I have cried tears of sadness for another thing on my plate.

I have worked and balanced phone calls and texts as I have had a total of 10 people in and out of the house to care for my 3 children this week.  I have worked to ensure that my school functions and the teachers felt supported and the children laughed all while I wanted to simply burrow and hold my boys and feel like one day it would all be ok again.

As I have finally read more about Marfan syndrome my best guess is that this will be Jacob's diagnosis in Boston.  It explains a lot of his struggles but not his educational struggles.  We will cope and move forward because that is the only choice we have.  He will feel love and connection but I wish he could feel it now, instead of having to rebuild his connections.  He is moving forward as he finds his way at the YMCA camp which has welcomed him with open arms.

Over time this too will just become our new normal and we will move forward, and my hope is that in Boston they will explain a plan of action which will help Jacob and possibly allow him to play sports that create such a strong outlet for him physically.  He will likely not be allowed to play football, but if he can find another sport, another outlet than he too will move forward.

Make A Wish Ambassadors

Tonight was incredible!  A few weeks ago we got an invitation to be Ambassador's at The Make a Wish Volunteer Appreciation night, and I immediately said we had to do this!  As a family we have been so touched by all that Make a Wish gave us when we went to Orlando in April, and I just knew we had to share our story.

We left the house tonight armed with our scrapbooks of our vacation and I had a few notes about the story of David to share.  We came home with our hearts full!  It is incredible to be surrounded by a group of people who give their time to make the wishes of children come true!

As soon as we arrived we were greeted by staff members of Make a Wish who immediately welcomed us and made sure we were all comfortable.  All 3 of the boys were greeted with such warmth and caring, but the best part was that once again David was the star!  David was asked about his trip, and he got to show off his scrapbooks.  People oohed and ahhed over his pictures with Mickey Mouse, and asked him to share about his Wish trip.

People reached out to me and I got to share our story.  So many people think of Make a Wish as an agency that grants wishes for children with cancer or other terminal illnesses, but they are working hard to change this misconception.  Make A Wish grants the wishes of children with  life altering and terminal illnesses.

David qualified for a wish due to his genetic disorder.  David takes 4 anti seizure medications each day and still struggles with seizures.  While seizures are not commonly a terminal condition, they have certainly altered David and cause him to struggle in so many different areas; socially, cognitively, with communication, and emotionally.  For David this wish was truly a celebration of all that David deserves given all of his struggles.

Tonight as I shared our story, David's story, and then I got to share about how incredible our Make a Wish trip was my goal was to inspire these volunteers to keep volunteering.  I want these wish granters to know that the work they are doing is changing the lives of children and families.  In a time of challenges and struggles the wish inspires children and families to keep up the fight.

After a week for us personally full of struggles and challenges tonight was exactly what I needed.  I needed to be reminded of all of the gifts that come with our struggles.

• As Matthew worked the room tonight, and greeted everyone, and all of the wish granters fell in love with him, I was reminded of Matthew's amazing strengths.  He is an almost 15 year old who has a gift for making people feel special.  His warmth is infectious and he makes all who meet him fall in love with his generous spirit.
• Jacob tonight was the goofball entertainment.  he was the adorable little brother who made everyone laugh.  As I was giving my speech Jacob was the goofball who came up to say hi to the crowd on the microphone.  He was the funny munchkin doing head stands and getting people to laugh.  He desperately wanted to win the raffle, and ended up not winning, but one of the winners gave him the golf balls he won anyways.  (Jacob came home and immediately gave the golf balls to our neighbor next door- this is the perfect picture of who Jacob is....he will beg and beg and beg for something, and in the end he doesn't want it for himself, he always wants it so badly for someone else!)
• David was the star of the night.  He smiled so hugely as people came over to greet him and talk to him.  As Matthew told my mom, "his smile was bigger than I have EVER seen it!"  This group of people knew how to reach David.  As one of them said, "if you ask him questions he answers.  We loved hearing about his trip!"

Tonight was the night that I needed at the end of a long challenging week.  I needed to be reminded of our blessings and of the gifts that we can share with others.  As my life has its ups and downs, tonight I will remember!  My boys are rock stars and together we will support Make a Wish, an agency that is changing lives one family at a time!

A magical night

After watching the Lion King show at Animal Kingdom our plan was to go to Epcot for the night.  At this point we were using our final day of tickets to any of the Disney Parks and we knew it was either push through the exhaustion and hit Epcot, or we would need to skip it all together.

Unfortunately, as much as I wanted to push on to Epcot, one of David's favorite Disney experience is the Nemo ride at Epcot, I also had to be realistic, and the boys were falling apart.  It was hot.....very, very hot!  Our feet were tired, and we still had a few more days of major parks ahead of us.  As we walked out of Animal Kingdom David became the voice of incredible reason and all but flat out refused to go to Epcot.  He was tired, and made it very clear that he was not going to another Amusement Park.  I quickly offered a compromise; we would go home to the Villa for a few hours, maybe take a dip in the pool, and then head off to Epcot in time for a ride or 2 and the fireworks.

As soon as we got back to the Villa the boys were hungry so we walked over to get dinner. I had heard that it was Christmas at Give Kids the World, but as we are Jewish I didn't give this much thought.  However, as we were walking over towards dinner, all of the kids and their families that we passed were beyond happy and chatting about Santa.  I could tell that the boys were becoming curious, and to be honest, I was also intrigued.  How do you celebrate Christmas in April?  How do you celebrate Christmas every week?  What does it all look like at Give Kids the World?

It turned out that Santa was set up right across the hall from the dining hall, and so as we walked in to the dining area we decided to check out Santa.  Magic.......true magic is all that I can describe.

First, we got in line to wait to meet Santa and there were so many amazing volunteers.  Each volunteer was just so devoted to each family and child that they interacted with.  Santa took time to take pictures with each child and family.  He took moments with each child to ensure that magic happened.  Then after each child  met with Santa they walked off of the stage area and are told to simply pick out a toy- these were not little toys....these were the types of toys children fall in love with- huge brand new containers of Legos, art sets, board games, nerf footballs, and so much more.  Truly, just more magic for children in a week full of magic.

After meeting Santa we had dinner, and then my mom took a little break and headed back to the Villa while the boys and I went off to explore Give Kids the World.  As much as I had wanted to hit every amusement park, and I thought missing Epcot was a bad idea, David was totally right....we hit the land of Magic by staying at Give Kids the World.

• There is a video arcade on property- no money needed, walk up to a game and play.  Complete with a teen night, this was a space just for kids.  The boys and I had an awesome night playing Pac Man,  a basketball video game and playing David's favorite, the driving game.  He laughed every time I told  him that based on how many times he crashed his video game car he would NEVER drive a real car.

• There is  a room with an electric train that goes through a toy village.  For little children this is pure magic. 

• We met some incredible families who just were able to be in a moment together and I was reminded again of the importance of slowing life down and spending time in the quiet together.  It isn't in the crazy non stop action where all memories are made.  After a day of busy, and so much to see, one of my favorite memories was just playing the driving game with David and Jacob and shooting basketballs with Matthew.  I also loved watching Matthew shoot hoops with another child who was staying at Give Kids the World. 

•  We were walking back towards the Villa and the boys asked if we could have ice cream and I was in a happy place and said yes.  As we went back to the ice cream palace we saw more volunteers scooping ice cream late at night.  We were happily eating ice cream when more families came in and I again just soaked in the moments of happiness and togetherness.  The boys asked for seconds on ice cream and I said yes- they thought I was being "amazing" and yet I was just soaking up Give Kids the World moments.  I was watching the volunteers and seeing the happiness in the families and just wasn't ready to head back to our villa.

•  As we headed back towards our villa there was one more moment of awesomeness.  While we were we waiting in line to meet Santa one of the volunteers had chatted with David and Jacob very briefly.  He was just one of the amazing volunteers we interacted with, and I assumed we had moved on and he had moved on to the next family.  I never expected that when we bumped in to him 3 hours later that he would remember my boys names and take such care to interact with them again.  He asked questions about their night, addressed them by name and just related to them with such care.  It was so heartwarming for me to see.  It made me smile that a 20 year old guy would never know how important this interaction was for me and the boys, for him it was just a natural part of being at Give Kids the World, but to me it was anf\other sign of the magic of our week. I am used to us being recognized, but I am not used to people remembering David's name- he is often the quietest of my 3 boys, and often the most overlooked.  For this volunteer to remember him and approach himself was must a moment of beauty to me.

Our final moment of magic on this Christmas night happened the next morning.  As we got back to the villa Matthew realized that he had forgotten his football from Santa  at the video arcade.  I called the front desk and they told me that the football had been turned in, and I could come and get it.  I was exhausted and just wanted to get the boys to bed, so I said we would stop by in the AM on our way to the next park to get the football.  Little did I know that the magic would find us again in the morning.  As we opened the door to go to Legoland on our porch was the football and a note:

                     " Santa and the elves missed you last night!  We picked out a present we hope you will enjoy" 

Of course this note along with a present was left for each and every child who was staying at the villa who had misesed the chance of seeing Santa.  Another reminder that every single little detail is taken care of at Give Kids the World.

We had been gifted a full week away.  We had been gifted a week of fun at Oralando's best amusement parks.  We had been gifted money to cover any expenses, and yet on top of this the staff at Give Kids the World made sure that Santa visited each child one time during their week at Give Kids the World.  One more memory.  One more moment of magic.  One more incredible touch to make kids wonder and parents smile!

Taking my animals to Animal Kingdom

Today was going to be the day that we were all to be tested.....we had seen 3 parks in 3 days and the goal by the end of the day was to have seen 5 parks....today we were to conquer Animal Kingdom AND Epcot!

Our plan looked great on paper: get to Animal Kingdom at opening, see as much of the park as possible and leave Animal Kingdom to head to Epcot by 4/4:30.  We knew that we needed to only see the major parts of Epcot and could likely skip visiting the Countries, and we knew we wanted to see the fireworks.  With plans for water breaks, and inside rides, i figured we were good to go.

Well.....good to go, until we started our day by oversleeping!  We weren't ready to leave the villa until almost 9:45, and so we were starting our day behind schedule.  No big deal, with a stop for coffee and breakfast, we were on our way, and set to stay on schedule.

As soon as we entered the park we headed right to  Dinoland U.S.A and my favorite ride DINOSAURS!  I have always loved this ride, but until this year the boys were not fans.  My hope was that with their new found love of rollercoasters that they may also enjoy this thrill ride.  Matthew and Jacob loved it, but David was again overwhelmed with the movement and the visuals.  Matthew and Jacob and I rode a second time, while my mom and David hung out waiting for us.

We then headed over to see the Finding Nemo Show- again, this was an purely incredible show.  David especially was totally enthralled throughout the entire show.  Watching the puppetry and the action come to life was amazing.

The boys then wanted to return to Dinoland USA to try the carnival area.  Jacob and Matthew again quickly headed onto rides, while David had his heart set on a game.  At this point in our trip I knew that David was collecting stuffed animals- he had a huge mickey mouse, a large patrick from Spongebob square pants, and now he had his heart set on winning a dinosaur at Dinoland U.S.A.  The problem is that I know these games are rigged and often impossible.  As we approached the lady running the games I mentioned that we were there on a Make A Wish trip, hoping that the lady would help him "win" the game......however, she was set on doing her job, and made it clear that there would be no "wins", he was to win or lose the game on his own.  He was playing the game where you have to throw a ball into a container- there were about 100 containers and David had to get his ball to land in one of the 10 containers that were different colors.  Ball 1, no luck.  Ball 2, no luck....Ball 3...I am holding my breath as it rolls around .....and LANDS IN THE RED CONTAINER!  He won!  I have no idea how he did it but he won!!!!

I have rarely seen a child so in love with a stuffed animal as David was as we strutted back towards my mom to show her his prize.  At this point the other boys were done riding their rides and we headed off towards Rafiki's Planet Watch.  My plan was to keep us on time and to hope that Jacob wouldn't notice Expedition Everest, a huge rollercoaster.  Unfortunately Jacob has a nose now for rollercoasters and sniffed out Everest......My hope was a quick ride on Everest and we would be back on track and off to see the baby animals.  It was hot as could be, and I wanted to get David out of the sun and on to see the baby animals and some inside exhibits.

Jacob LOVING Everest!

Jacob immediately got on Expedition Everest and got off and declared it AWESOME!  Matthew was riddled with anxiety- he was desperate to ride Everest but also scared and so he started asking questions.  "is it fast?" ,   "does it go backwards?", "do you go upside down", "is it fast" "does it go backwards"," Do you go upside down?"  over and over again, to every person he found, he repeated his questions, and then he watched the ride go again, and then he talked about wanting to ride, and then he asked his questions.  Finally, after Jacob rode a second time, Matthew decided he wanted to ride....ok, maybe not wanted to ride as much as he felt he HAD to ride it......Jacob quickly convinced him that he would go with him and keep him safe     ( yes, it was an awesome moment of mom pride to see the 2 of them go off together to get on the ride).  Matthew covered his ears, he worried, he panicked, and then he did it!  He rode Everest.  He had no need to ride it again, but was so proud of doing it once!

i love Matthew's face in this picture!

Finally, over an hour later, and no longer anywhere near being on schedule, we were off towards the animals.  As we walked we saw a quiet spot with a line, so of course I had to see what was going on.  It turned out that this was a Character greeting area with Safari Mickey and Minnie.  I figured since David had just waited almost an hour while the boys rode Everest that we could take a few minutes to meet Mickey and Minnie.  We showed the person our special passes and he let us go in the Fastpass entrance and this is where we noticed that even in the Fastpass line we still had over a 20 minute wait to see the famous Mouse.  As we waited David started to pick at things and bang the wall, and then bang his head on the wall.  I walked out to ask if there was any way that he could meet Mickey any sooner.  He had been in the heat too long, and it was all a little too much, and he just wanted to see Mickey.  Sadly, we were told that he needed to wait in line.

As we waited the family in front of us began to notice David's struggle.  As they were called in to meet Mickey the mom encouraged us to go in front of them.  She was so sweet, and David was really struggling and so we went ahead.  Unfortunately, once again David checked out as it was time to meet Mickey.  

Even with David checked out, this was a magical moment.  The mom from the family in
front of us was so touched to meet David and our family, and she was so sweet and kind.  She took pictures of David meeting Mickey and just seemed to innately understand, one mom to another, how important this moment was to me.  After we met Mickey we took a moment to help David rehydrate and get back together, and as the other mom came out she asked for my email address.  She had taken some pictures of David meeting Mickey and wanted to make sure that we got a copy of them.  As she left she and I both had tears in our eyes- it was truly a magical moment that we shared and a moment of connection from one mom to another that I will cherish.

As we continued on we headed to get some lunch and then finally to Rafiki's Planet Watch.  We were now officially behind schedule, and decided to simply live in the moment.  We knew that we couldn't leave Animal Kindgdom without seeing The Lion King Show, and based on the available show times it was more and likely that we wouldn't make it to any show before the 5:00 showtime as it was already 2:30!

We quickly took the train over to Rafiki's Animal Planet and while the boys enjoyed seeing the animal hospital area, and my mom and I enjoyed hanging out in the air conditioning, this part of the park was not nearly as big a hit as it had been a few years ago.  Matthew was thrilled to meet Chip and Dale ( again, a fun mom moment as my 14 year old happily stood in line to meet some cute chipmunks!)

After a quick dash to the safari ride, it was time for the highlight of the day.......

THE LION KING SHOW!

At 5:02 we got to the entrance...I am convinced we have missed our opportunity to get in, and yet once again our awesome passes save the day.....we are quickly escorted to front row seats.....Please, don't allow yourself to believe that this is all roses and sunshine...as we are trying to get David to come to the show, all he is saying over and over again is "it's just a show""it's JUST a show" "it's no fun, its JUST a show" over and over and over again...repeat, repeat, repeat....there is no distracting him, no convincing him that it will be fun, until the show starts....from that moment on.......his eyes glimmer and he is HOOKED!

The Lion King Show was amazing for all of us!  Jacob is amazed by the monkeys are their gymnastic movements, Matthew loves the rhythm and the music  David loves all of it, and even giggles later as we remind him that he thought it would be "just a show!"

As I watched the boys at the show, I began to realize that we had to live in the moment more.  While I want to get to Epcot, I realize that David is cooked.  He is exhausted, and an exhausted David is not a David who is having fun.  I suggest to my mom that maybe we should go back to the Villa for a little while and then head to Epcot after everyone has cooled off.  She agrees and so we head back to the villa.

Stay tuned to learn about our magical night in the next blog!

Hollywood studios afternoon edition

After we finished up with meeting Buzz and Woody, Jacob and Matthew were excited to go off and hit the big roller coaster rides at Hollywood Studios and David was ready for some time out of the sun.  Because David wasn't riding all of the big rides that the other boys were riding, he and my mom had been spending a lot of time together.  I was really wanting some time with David, so I was thrilled to take him shopping while my mom walked with the other boys to go tackle The Tower of Terror and The Rocking Rollercoaster.

David is a shopper....he loves to look around and simply enjoy all of the looking and exploring within a store.  He and I had a great time checking out all of the shopping options that are at Hollywood Studios.  We checked out Mickey Mouse socks, they didn't have his size.   We checked out hats, he didn't like how they fit.  We looked at t-shirts, and toys, and stuffed animals.  So many awesome stuffed animals.....and then he fell in love!  As a true Mickey Mouse lover, he fell in love with the largest Mickey Mouse stuffed animal you can imagine.  I hoped that it was so large that it would be out of his price range, but it only cost $40.  I tried hard as I could to talk him out of it, as I was becoming afraid that we didn't have luggage big enough to fit all of the things we would be taking home....but there was no talking David out of this stuffed animal.  He was officially in love.

After lots of slick maneuvers on my part, I finally convinced David that we needed to leave Mickey Mouse at the store and we needed to go to the Fantasmic show and then we would come and buy Mickey at the end of the night just before we left.  This Mickey was so big I just could not see myself lugging Mickey around for the rest of the day while we saw shows.

Finally we met back up with Jacob, Matthew and my mom and the boys were on a high from riding The Tower of Terror!  They both loved it, although Matthew said it made his "tummy feel funny".
After reuniting it was time to see Fantasmic.  This is an awesome show!  David thought that seeing all of the characters in one place was a riot.  He kept asking "what are they thinking?  So many Mickey's, what will the manager say?  What is Mickey doing?"  He was truly alive and engaged and loving the show.  This is my favorite version of David- he sees the humor in life.  He chats up a storm and notices the slightest details in everything.  He truly giggles as he talks.  It is the best!

After we finished watching Fantasmic it was time to see the Hollywood Studios fireworks and GO GET MICKEY!!!  As soon as Fantasmic was over David was ready to go buy Mickey Mouse, so waiting until after the fireworks were over was again a bit of a challenge.  Thankfully, once the fireworks started he was enthralled and just loved them.

As we left the park we stopped to show Bubbe the new Mickey, and David made his purchase.  Talk about a happy kiddo!  David thinks having ANOTHER oversized Mickey Mouse is the best thing ever and had a great time snuggling with him on the car ride home.

Jacob was very excited as we returned to Give Kids the World because it was time to make his dream come true and order pizza at 9:00 at night!  We ended the evening with a pizza party in our villa, and then we hurried the boys to bed because we knew we had to get up and out in the morning....our goal was to tackle Animal Kingdom and Epcot....this was going to be a tall order......our heart and souls were prepared, but Bubbe and I had some aching feet at this point.

As the boys went to sleep, Bubbe and I had some time just hanging out together, talking about the trip, the boys, and simply being together.  For me this was a special night, because for as many hours as we were together on this trip, there was always a distraction.  For me, this was a few hours with my mom, who had now lived a few days inside my world, and was able to give me an outsiders perspective about the good, the bad and the ugly that makes up life for me and the boys.

We talked about our worries for the boys, and their strengths.  We talked about how amazed we were to see Jacob loving the roller coasters so much, and at how proud we were to see Matthew trying the roller coasters.  We talked about how adorable David is, how much he loves each of his Mickey Mouse stuffed animals, and how special this week was so far.  And finally, it was time for us to head to bed, as we knew we would be getting up again in the AM and starting another day full of adventures!

Make a wish trip....part 4- 3rd park in 3 days- Hollywood Studios

One of the things I always ponder is how much of my boys lives are impacted by the question of nature vs nurture.  I am a person who has 2 speeds.  I love to either be moving and busy, or I love to be sleeping.  There are very few times that I am living life somewhere in the middle of those 2 speeds.  Matthew and Jacob LOVE being busy and are constantly on the move.  This trip brought to light how much David truly prefers a slower pace than the rest of us, and it was a good reminder to me that I need to make time for us all to go slower.

Luckily, in true David fashion, he will  make sure he is heard by doing whatever is necessary.  Tuesday night after being at the Magic Kingdom and getting home close to midnight David had a huge breakdown.  He threw things, he yelled and finally when he stopped he answered my yes/no questions enough for me to hear from him that we had to go slower.  He was sad that his brothers were going on roller coasters and he didn't like them.  He was feeling left out of their fun, and he needed us to go much slower so that he felt engaged.  I promised him that we would go slower at Hollywood Studios and we would all have a great day together.

On Tuesday, upon entering Hollywood Studios we started off by looking at the map and really looking at what we wanted to accomplish for the day.  David loves maps so this was a great way to start our day.  We then headed off to check out the Star Wars activities which are right as you walk into the park.  We rode the Star Tours ride, but one of the things I was beginning to understand was that David was struggling with the 3D  and 4D ride experiences. He was doing ok with the 3D shows, but somehow the visual aspects of a 3D show along with the motion of a ride, was too much for him.  I made sure that after riding Star Tours that we took in calmer experiences to give his body a rest from the visual stimuli.

Jacob meets a Stormtrooper!

Our first show of the day was Muppet Vision 3D and this was one that all of us loved!  Throughout the entire trip David thrived when we saw shows together.  He has a fantastic sense of humor and the more crazy the shows were, the more he enjoyed them. The Muppets are the perfect balance of physical humor and great entertainment, especially in 3D.

As we were continuing on after the Muppet Vision 3D show we noticed David was getting hungry and a hungry David is not a good thing.  We stumbled upon the Sci Fi Drive in Theatre and I just knew this was where we needed to eat.  This was one of the times that it was simply awesome to be wearing our Make a Wish Shirts.  As soon as we went in to try to get a table, I found out that they were booked for the day.  The hostess looked at our shirts and asked me to wait a moment- she came back and said that if we could wait about 30 minutes she would have a table for us!  I was excited because I knew the boys would love eating in a drive in movie restaurant, and I was happy that David would have some time in the air conditioning.

Eating lunch inside a car......how cool is that???

Fewer times is a mom more wrong than I was at first about this dining experience.  I was so excited to see the boys reactions to eating in tables made out of cars, that I psyched myself up and my boys were sure to remind me that they are kids who often can be unpredictable.

I tried to surprise Matthew by ordering onion rings as an appetizer, a food he ALWAYS begs me for but I will almost never pay extra for......his response?  He was mad because now he couldn't have onion rings on the side of his burger.

I tried to surprise Jacob by saying he could order a milk shake......I NEVER approve a milkshake as their beverage.........the response?  He wanted chocolate.  Matthew then ordered vanilla.  Now Jacob wanted vanilla.  Now Matthew was mad that Jacob was "copying him".  Then the milkshakes came and it was too thick.  Now Jacob just wanted the regular drink that David has.

You know the saying, "no good deed goes unpunished."?  That's kind of how this lunch got started.  Thankfully, after a few minutes the boys got excited about the ambience of this cool restaurant, and we ended up having a great lunch complete with  Jacob taking a lunchtime nap at the table.

only a super tired kiddo falls asleep before
drinking their milkshake

Jacob cheesing it up!  

After lunch it was time to hit another one of my favorite areas in Hollywood Studios.  I love Toy Story Mania and I was excited to show the boys the Toy Story ride again.  Unfortunately, David started to look "out of it" again and fought against going on the Toy Story Ride.  I was able to get him to ride it with me once, but he was then out of it for 30-40 minutes after the ride.

One of the things I really struggle with is that I am never sure what is going on for David in these moments.  He does not have convulsive seizures, so there is no way to know if he is having an absence seizure of if he is just shutting down for some reason.  I hope that one day he will be able to tell me what he is feeling or thinking so that I can really help him.

As you can see from these pictures, meeting Woody and Buzz Lightyear was something Matthew and Jacob loved, but David was just not fully with us for this part of the trip.

This was one of the times that David really needed my phsyical support and connection on the trip.  Woody was fantastic at trying to engage David.

My mom would move mountains for David.  She worked to support and engage him, and he loves her kind and patient methods.

You have to love a 14 year old who hugs a life size Woody like this!

After meeting Buzz and Woody it was time to make one of Matthew's dreams come true.....the boy fell in love with monorails and............wait for it.............palm trees! 

 His one request.....a picture of himself with a palm tree!

This boy is the picture of cool!

The rest of our day at Hollywood Studio was amazing........i will leave you with this picture of a boy and his palm tree and will fill you in on our afternoon at Hollywood Studios in the next few days.

Off to meet the Mouse- Make a wish trip part 3- Blooms take on Magic Kingdom

On Tuesday, we headed out to spend the day at Magic Kingdom with a break at David's favorite restaurant- Chef Mickey's, for a character lunch.  Chef Mickey was the one place David really wanted to go, so we set off for Magic Kingdom full of excitement.

We entered Magic Kingdom and I decided we would go to the quieter parts of the park first.  We started off in Adventureland and did a Jungle Cruise.  Jacob was excited that he was to see real animals, and was disappointed by the fake animals he saw, while David giggled and was entertained on this funny cruise!  David's teacher describes him as having an awesome sense of humor, and the cornier the jokes the cruise driver made, the more David smiled!

We also hit Pirates of the Caribbean, and then it was time for us to head off to Chef Mickeys for lunch.

Matthew is obsessed with monorails, and so for him not only were we heading to lunch, but we were also off on a monorail ride!

just in awe at the awesomeness

 The boys all loved the monorail especially because this monorail goes right through the Contemporary Hotel!


Now it was time for Chef Mickeys Restaurant!

Immediately upon a character coming over to meet David, he starts to panic.
It was hard to see him so nervous, knowing that he would soon meet Mickey.

You can see here that David is very unsure  After Minnie and Donald left, I had my mom, Jacob and Matthew go get food so I could talk to David.  He teared up, and was so nervous.  

He knew Mickey was in the same room as him, and it was too much!  Finally, we slowly went and peaked at Mickey, and then talked some more, and over time I was able to convince him to get some food,  Finally, after about 20 minutes......it was time for the big Mickey meet and greet!

This smile melts my heart.  I know it is a side view, but man, his eyes are twinkling and he is so excited!  His idol is close enough he can touch him!
It's funny, in that moment I truly remember feeling so disappoointed because the previous 20 minutes had been so hard to watch.  On so much of this trip David tore the finger off of his thumb as he dealt with anxiety.  The more we asked him to stop, the more he picked.  He was throwing things, and ripping things, and even ripped his autograph book that we had hoped to get Mickey's signature in, so I am so thankful to have this picture to look back on that captures that his "moment" did happen, because in that time, I felt it was lost.  Now to see his cheeks, and smile so happy and Mickey so engaged with him.....well, it is pure magic!

After lunch we headed back to Magic Kingdom.....we knew we had less than 7 hours to complete the entire Magic Kingdom park....this is a tall order, but the Bloom's were up for the challenge!

                         My mom and David had a blast shooting the targets during the Toy Story Ride

Matthew said his highlight from Magic Kingdom was meeting a monorail driver and getting monorail trading cards (yes, these really do exist) and driving the small cars in fantasy land.  Matthew also had the comment of the day when he announced before the parade, "I love all girls, I should date them all!"

For David, the highlight was definitely Mickey's Philharmagic.  He LOVED this show, and thought it was awesome to see Mickey Mouse in 3d.  He also thought the fireworks were incredible, and loved watching them by the castle.

For Jacob, Space Mountain wasa HUGE hit!  A rollercoaster in the dark.....does it get any better than that? He also loved the parade- I loved watching him oooh and ahhhh as the parade went by.  He also enjoyed the fireworks, but felt like they would be "much better without the boom!"

For my mom I think the highlight was seeing the boys on It's a Small World and just watching the boys faces as they took in the magic.

When it was time for the fireworks, I got to watch them with Jacob on my shoulders and David holding my hands.  In that moment, it was pure magic! Late at night......at Magic Kingdom......life was good.

Make a Wish Part 2

Since coming home, one of the most important things to me is that people hear a few messages from me about our Make a Wish trip/my family and our experience.  First and foremost, I want you to hear of the incredible gift that we received and the foundations that give these gifts to so many families.  However, that said, I need you to hear and understand that even while receiving a magical gift, that the struggles of raising my 3 boys is intense at times and that this trip was no different than other times in our lives.  It is only by sharing the story of my family that people can understand what makes children with special needs different, and this trip for us was an amazingly highlighted week of the ups and downs of life with the Bloom boys!


Even today as I shared our story and my worries and sadness over some of the experiences that I will share, I heard from many, "all kids struggle at Disney World" and "Disney brings out the worst and the best in all kids".  This I am certain is true.  For all kids there is the hype and excitement about being at the parks, and the go, go, go speed of a vacation like Disney.  However, when you bring a child with special needs, there is all of the typical challenges and then other challenges that go with the territory.  For each of my boys, their struggles were magnified by being at the parks.  That said, I have to also share that as much as their struggles were magnified, so were the the things about them that make them sweet and special.

On our first day in Orlando we went to Universal Studios.  As part of David's Make a Wish Package, he was given passes for 2 days at Universal Studios, 3 days at any of the Disney Parks, and a day at Sea World.  In addition, Give Kids the World has  passes for Legoland and other parks available and I really wanted to make sure that David saw Legoland. In order to do this and get David to all of the Disney parks, the plan was to go to Universal Studios first and see if the boys would need 1 or 2 days to see all that they wanted to see at Universal Studios.

Upon entering Universal Studios I quickly realized that this was going to be one heck of a trip.....keeping track of all of the boys, and watching them as they saw everything for the first time was going to be so much fun!  David heard that there was a train that he could ride from one part of the park to the other and so for David his focus was intently on finding the train.  Unfortunately, the train was halfway through Islands of Adventure, and so while David was intent on finding the train, there was A LOT for us to see before we got there!

It turns out that Jacob is a total thrill seeker.....one of the perks of being with a Make a Wish child is that you get a pass for each park that gets you to either the front of the Fastpass line, or the ability to enter the ride through the exit.  For Jacob, this was a HUGE PERK, because the bigger the ride the longer the lines, and the ability to skip these lines was huge!  He and I immediately went on a free fall ride called Fear Fall, and Jacob was HOOKED!  From that moment on, it was Jacob's mission to go from big ride to big ride often riding a fun ride more than once and he never wanted to look back.
                                                               
The more big kid rides that Jacob rode the more that Matthew was intrigued and preparing himself to go on the bigger rides as well.  It took some time before Matthew was ready to tackle something as big as the Free Fall, but not as long as I would have thought.

 I took the boys on the  Spiderman Ride and this was where we introduced David to the fun and craziness of a 3D thrill ride.  While David was a good sport, I think that he came off of Spiderman really trying to like it, but totally convinced that he had signed on for more than he expected.

On this trip, there were many times that David would be stuck and only say the same thing over and over again.  This was around the time that all David would say to me is "where is the train?"  It was impossible to walk Jacob past the rides and try to get David to the train, plus it just didn't make sense to go out of order, so as we walked I did my best to keep David focused on the rides around him so that he would stop asking about the train.  This was a huge job as I was trying to engage David and he was only engaged in wanting to know where the train was!

One of the highlights for me was when we went through the Jurassic Park Zone and we saw a long line of people but we were totally unsure what they were in line for.  When we heard that it was a photo opportunity, I happily encouraged us to all get in line.  Little did I know that it was an opportunity to meet the Dinosaur from Jurassic World!  By skipping the line, we had NO IDEA what we were about to see........this is easily one of my favorite pictures from Universal- I love the look of fear on David's face, the look of awe on Jacob's face and the "don't mess with me" look from Matthew!

After seeing the Dinosaur, we wandered past the train- yes, that took some fast talking from me and my mom......and towards the Dr Seuss zone....I figured I might only get to Universal Studios once, and I had to at least see Dr Seussland!  After riding the Trolley Train Ride, it was decided that we were all hot and hungry and that Dr Seuss land was a little on the young side for most of us, so we headed off to find some lunch.

Once again our Make a Wish pass came in very handy because David has seizures that are triggered by intense heat and it was becoming ridiculously hot.  A hot, hungry David is a REALLY bad combination, and so we went to eat at Mythos Restaurant, and with our pass we only had a 20 minute wait.  Unfortunately, upon sitting down for lunch I realized I had a hungry, hot David and the restaurant did not serve Mac and Cheese- it took some quick thinking, but I realized that as long as the waitress could be convinced to call "Pasta Alfredo" by it's more child friendly name "Mac and Cheese" then we might be able to save lunch without too many things being thrown by David.  Thankfully, the waitress was amazing.....and she had a brother with autism, and quickly understood that by hyping up the Mac and Cheese, she could help calm David down, and we could have a nice lunch.  This waitress was by far the best our whole trip.  She totally understood all 3 of my boys, and she was able to meet all of their needs while my mom and I were able to cool off and plan for the afternoon.

After lunch it was time to hit the train!  Of course before David got on the train, Jacob convinced him to try the Harry Potter Ride- we rode another 3D thrill ride, and again David got off trying to figure out why any human would ride something like that voluntarily.

Finally.....it was time for the train and while I think David enjoyed it,  there was no way that after wanting to do something for 5 hours that it was going to meet his expectations!  Essentially the train became the pathway towards David's next "want/obsession".  From the moment we got off the train, David saw a sign for the Simpson's Ride- David has wanted a Simpson's lego set of a grocery store for almost 2 years so in David's mind if he could get to the Simpson's ride, then he would also get to the Simpson's lego set.....unfortunately, he would quickly learn that there was no lego set at Universal Studio.  David was stuck.....all he wanted was the lego set, and the lego set didn't exist.  I reminded him that we would be going to Legoland....I told him of the Lego store in Downtown Disney, but eventually I had to just pick him up to keep him moving. Carrying a 12 year old, even a small 12 year old, through a theme park is not easy, but at times for David it is the only way to help him get past being stuck.

 On the World Expo part of Universal Studios there are many of the 3D rides and rides with lots of lights and motion.....the more of these that we rode, the more overwhelmed David's brain became, while at the same time making Jacob's brain amazingly happy!  We were at a cross roads....it seemed that David could really only handle a few of these types of rides at one time, but Jacob was desperate for them.....how do you help 1 child go past these rides when it is a once in a lifetime opportunity, while helping your other child who is quickly becoming overwhelmed by all of the stimulation to his brain?  There is no magical answer for which child's lead you follow, so my mom and I did our best to balance the needs of both boys.

Luckily, an easy balance came when it was time to meet characters....all of the boys fell in love with meeting Patrick from Sponge Bob Square Pants!  It is a riot to see Matthew, who goes from Ultra cool 14 year old, who made sure that he had sunglasses with him everyday to wear at the parks,  to little boy when he meets any character.  He is still not certain whether these characters are real or if they are costumes with people inside!                                                                                                                                                                                

Finally, our bodies were becoming exhausted and the park was gearing up to close, and Jacob saw 1 more ride that he HAD TO DO!  The Hollywood Rip Ride Rockit was the Mecca of rollercoasters for Jacob.  I was certain he would chicken out, and he was just as certain that he had found the promised land!  Faster than I have ever seen him move, Jacob ran off, ready to tackle the Rockit! I chased after him, ready to reassure him that it was ok to skip such a big ride.  I got to the entry of the coaster in time to see Jacob talk to the ride operator and take his seat in the front row......I had hoped he was too small......certain he would chicken out.....positive he would NEVER sit in the front row....instead, he fist bumped his riding partner, and off they went!  No sooner than he finished his first ride, than he jumped back in line, and hopped right back in the front seat for a second ride on the Rockit!  True Crazy Insanity!!!!  Matthew stood there watching him the whole time...desperate to get on the Rockit and petrified all at the same time.....it would be another day before Matthew would jump on the big coasters with his brother, and he did a great job cheering Jacob on and watching him ride.

As we walked back down from the Rockit my mom and David were having a blast- you see the sun had gone down, David was cooler, and he was hitting his stride.  He thought that knowing his brother was on this insane coaster was the funniest thing EVER!  He laughed and laughed at the idea of Jacob being up in the air, over his head.  The entire time Jacob rode this coaster David kept my mom chuckling by asking what in the world Jacob was thinking!

Finally, with laughter and the conquering of the Rockit, my mom and I were beat and it was time to head home to our villa, and prepare ourselves for Tuesday at The Magic Kingdom.  To Jacob's great excitement upon returning to the villa we ordered pizza at 9:30 at night, proving that dreams really do come true!  Finally around 10:30 we got the boys into bed, and my mom and I set out to pack and plan for our day with Mickey Mouse!

Make A wish- David's trip to Orlanda- Part 1- Give Kids the World

David has always lived life pretty much on the sidelines- he spends his summers watching Jacob at football practice, and when the boys are outside playing he often chooses stacking sticks, cleaning the garage or tidying the garden area.  He is a child who really has not mastered the art of play, and if I give myself time to really think about this, it is one of the saddest things in my life.

Play....it is what I do for a living, and yet for David play this is an unknown skill.  He loves puzzles, but left to his own devices, free time for David is spent cleaning something or organizing something.

This is one of the reasons that I realized about a year ago that I needed to see David have a time in his life that was just all about him.  We watch Jacob play football, we watch Matthew play basketball and softball, we go to events for Jacob at school, we take Jacob to playdates and birthday parties, and for all of these things David is a happy observer, but I needed time for David to shine.

At David's last neurology appointment the Doctor and I talked about the Make a Wish Foundation and Dr Simmons told me that he had seen children approved for a Wish with a diagnosis like David's.  When I contacted Make a Wish I was thrilled to learn that David qualified and we would be making David's Wish come true!

Anyone who knows David knows that his biggest wish in life is going to be centered around Mickey Mouse, so it is no surprise that his wish was a trip to meet Mickey Mouse in Disney World.  On Saturday at 11:00 we were picked up in style and the boys, my mom and I headed off on a huge adventure in style!

We landed in Orlando and were immediately greeted by a volunteer from Give Kids The World, likely the most magical not for profit foundation I can imagine.   Give Kids The World exists only to fulfill the wishes of all children with life-threatening illnesses and their families to experience a memorable, joyful, cost-free visit to the Central Florida attractions, and to enjoy the magic of Give Kids The World Village for as long as there is a need. 

Give Kids The World and Make A Wish Foundation worked together to give David a week of Magic:

*Flights to Orlando for all of us

* Passes to all 4 Disney parks for the 3 boys, and my mom and I

* Passes to Universal studio for all of us

*Passes Sea World for all of us

* Passes to Legoland for all of us

* and an incredible villa surrounded by everything that makes a child's dream come true.

I thought before we left that I knew what to expect.  I knew we would have passes to do everything David would want, but I had no idea that we were on our way to entering paradise.  As we walked into our Villa it became apparent that we had entered a world of magic and happiness, that is focused on the needs of children.  As Jacob heard that we could order pizza to be delivered to our villa at 9:30 at night, after a day at the parks, and that ice cream was available from 7 AM until 11 PM, well, basically he knew he had entered paradise!

We spent our first night just getting the lay of the land at Give Kids the World.  The boys were each given a token to have a pillow made for them and they walked up to a special tree, told the tree their favorite color and a pillow popped out for them....complete magic.  I still cannot figure out how Jacob got a  gold pillow decorated with footballs and other sports items, while David got a yellow pillow covered in traffic signs.  How did the tree know which fabric to use?????

Then David decorated his star- something that is done by every Wish child.  His star now hangs in a huge gallery full of stars from all of the children who have stayed at Give Kids the World.

After decorating David's Star, it was time for us to wrap up our first night and get ready for our first day hitting the Amusement parks.....just as I thought we were heading back to the Villa, the boys stumbled upon the salon where they each got fake tattoos, and Jacob got his fingernails painted the colors of the Giants!

I could hardly believe that the magic had not yet even started, and yet I already felt like we had been given so much.  So much more was to come our way.  Incredible memories were made over this week- we met people who simply made us smile, we had moments that simply brought us joy, and there is so much to share......over the next few days I will try to share with you our Make a Wish Journey!   

Our struggle with Lyme Disease

It's been a while again since I have posted, mainly because I have been going through a lot with Jacob and I work hard to protect Jacob's privacy.  While I do try to keep some parts of life for David and Matthew private, I am also aware that both of them will live a very different life than Jacob will in the future.  My hope is still that Jacob will be able to live a mainstream adult life, and as such I want to ensure that his privacy is maintained.

That said, I always have believed that this blog has been a way to share information and I am already aware of families who have been helped by reading our story, so given Jacob's recent challenges, I want to share how Lyme disease has impacted him.

Last summer Jacob became very moody and there was never really a good reason as to what happened.  As his mom I tried to hypothesize reasons:
* He was missing the structure of school
* He was struggling with going to different camp programs
* Being a brother to Matthew and David had finally come to a head and he was struggling with the stress of his role in the family.....

On and on and on......for every problem I hypothesized a reason.  And yet no matter what I did to try to help Jacob, the stresses remained.  Once school started things were a little better in September and October and then suddenly in November it was as if Jacob's world fell apart.  He had a few weeks of strange headaches, combined with a fever that came and went, but he was never really super sick.  Then his behavior in school and at home really bottomed out.  He was miserable everywhere, he wasn't smiling at all, and he was just drained.  Even football, which he once loved, he hated going to.  Nothing for Jacob was fun anymore, and his smile was gone.

After seeing a neurologist and having blood tests run, Jacob was diagnosed with Lyme Disease.  I may be the only mom in history to cheer at a diagnosis of Lyme disease, but I was fearing some horrible disorder, and so I figured he would be treated with a month of antibiotics and then be "all better"!  I could not have been more wrong.

Now, 3 months after the antibiotics, I am starting to see glimpses of my son coming back to me.  He is happy a lot of the time.  He is asking for friends to come over.  He is acknowledging that he has friends.  He is smiling at school, and he is smiling at home.

When you have a child who is typically happy, and then he becomes dark and angry it is even more scary than having a child who has always had mood fluctuations.  With Matthew there had always been Special Education services, support for mood issues, and a team of specialists to help him, so when he began to struggle emotionally in 3rd grade it was not a huge surprise.

With Jacob my hope was always that he would be the child of mine who followed the typical path in life, and while this has not been the case, I also never expected that he would struggle in a way that made him the most challenging of my boys, and yet this year that is what we have faced.

I am beyond thankful that he has been blessed this year with a team of teachers who have known something was wrong and who have done everything possible to support him and find answers rather than just expecting him to "get better".  Without this team I don't think I could have made it through this year as well as I have.

However, for Jacob, he has not come through this year unscathed.  He now has a 1:1 aide at school, and he is using assistive technology to write rather than writing by hand.  For some reason, we are not sure why or the root cause, his handwriting has gone from that of a 9 year old boy, to completely illegible.  He is very proud to have a computer to bring home and do homework on and to use at school, and quickly has seen this computer as the path to success.

What has amazed me over the past month as Jacob has begun to return to a happier version of himself, is that every tool we have put in place to help him has been met with complete enthusiasm and almost a sense of "it took you all long enough to figure out what would help!"

On the Friday that he was told about having an aide at school he came home excitedly to report the good news.  He then woke up Saturday morning begging to go to school so he could meet Mrs G!  He did the same thing on Sunday morning, and was upset that he had to wait "all the way until Monday!"  Since Mrs G started, Jacob has had amazing success.  While his days are not perfect, she is able to tell him throughout the day how well he is doing and we are rebuilding his self esteem which took a huge hit this year.

Jacob is now part of a social/emotional development program at his school and he loves working on all of the skills that are part of that classroom.  He has been sharing with everyone that the word "antagonizing" means "bothering someone" and tries to use it as often as possible.  He is enjoying the rewards of this new classroom, as well as the responsibility that comes with it.  He knows that he has a new teacher in the school who can help him, but he also has been very successful working in his regular 3rd grade classroom almost all day every day.

Watching him do his homework this weekend I was so proud of him.  Instead of crying when it was time to read, he happily skipped off and got a book.  He then couldn't wait to finish reading so he could do his write up on the computer.  While I watched him hunt and peck for each letter I was fearful that he would get frustrated.  He was just excited to complete a thought without having to rewrite what was illegible and then lose his train of thought!

I hate that for so long we argued over reading, when in reality the problem was him having to write his response to what he read.  For most of the year he has read and then quickly run over to get the paper to start writing only to scream and yell.  Between forgetting what he was trying to write, and not being able to form the letters, it was as if each night he was living in a nightmare of an unattainable homework assignment.  Thankfully, reading seems to now be enjoyable, and the homework that once took forever is now done in a reasonable amount of time with no tears.

I have done enough reading about Lyme disease to know that it does not have a clear line from diagnosis to treatment/cure, but my hope is that over time Jacob will continue to get better.  There are definitely some things that are concerning and we will be following up with a neurologist to learn whether these are permanent changes to Jacob or whether he will regain skills in time.

Emotionally, Jacob is being well supported at school, and is beginning to look more and more like his old self each day.  He is wandering the neighborhood looking for kids to hang out with and for me that is HUGE!  To see my social kiddo go from wanting to only be alone to now finally wanting to be social again makes me so happy!  Losing his friendships was the hardest thing for me to watch. But, I am trusting in Jacob's charisma and the kindness of children, and hope that in time  these friendships will grow again as Jacob continues to return to the happy, friendly child he always was!  I am sure that this path to happiness will not be without bumps, but seeing glimmers and glimpses of Jacob makes it all worthwhile!