everything is possible... the impossible just takes a little longer

slow and steady wins the race

Friday, October 30, 2009

more friends...

On our very last day we checked out of our villa and headed to Aquatica... Sea World's water park. It was Amazing. This is a family picture that was taken right inside the park. There is a water slide that shoots you down through a tube that goes right through a dolphin pool. I was going too fast to really see them but Andrew informed me later that if you sit up you go slower and can actually see them swimming above and around you.

When we went to Sea World we were able to take advantage of some special things that we may have otherwise passed up because of $$$ but our Make-A-Wish and GKTW passes got us the red carpet treatment all the way. Not only did the boys get free trays of fish for the dolphins and Sting Rays but we again were escorted to the front of the line and we were treated to some special dolphin introductions. This was something the boys were really looking forward too and it was incredible. Feeding the dolphins was one of the things that was truly a highlight and something the boys will never forget...Thank you so much Make-A-Wish. We were not only able to feed the dolphins but we got to touch them too. One of the trainers, (taking notice that we were a Wish family) used a whistle to call several dolphins over to our area and to have one come up on this ledge right by the wall, sit there and hold his tail up so that Sam could touch him. I think the many of the dolphins were moving too fast for Sam to really see them well so this was a nice treat so he could actually interact with them. We also got to feed the sting rays
They gave each of the boys a tray of fish to feed the dolphins... Sam immediately tossed the entire bowl right into the water... bowl and all. The trainer had to pluck it out of the water but then gave him another tray. You can't see her in the picture but the trainer has called this dolphin over and is asking him to stay there and wait for Sam to put the fish in his mougt and the surprised look on Sam's face is because the dolphin is talking to him too.

Same dolphin but with out the trainer instructing him... he was a bit more eager to snatch the fish away from Andrew.

This is one of the dolphins the trainer called over so that Sam could get a closer look.
These dolphins were chirping at us... Sam loved it
This is a pic of Sam waiting for the Shamu show.

A few new friends...

These are pics of a few new friends we met. With our special passes from Make-A-Wish and Give Kids the World we were able to jump right to the front of all the character lines. I felt a little bad about it at first... the lines were always really long and so a few times we just got into the regular line with everyone else. However when anyone saw our badges they would escort us to the front of the line. One of the character helpers told me...
"you guys have to wait for enough in your lives and have had so many more challenges... you have a special pass for a reason and so no matter what anyone says you enjoy yourselves here, you are our special guests and special guests never wait... everyone here (at the parks) is always on the look out for your pass and they want to make your experience here one to remember and enjoyable and this is just a little thing that we can do to make things easier for our special guests. So please don't wait in lines anymore... Mickey said so"

Stitch stole Andrew's ice cream cone!

We actually had to wake Sam up several times during his visit with Woody and Jesse. It was such a hot day and we had a late night the night before. Sam just couldn't keep his eyes open. But they were very sweet.

Sam loved Goofy and Donald. He gave them both kisses.

Jedi Training Academy was sooooo cool. Andrew got to battle Darth Vader. Sean was a bit more leary of him but they all had a fun.

Oh how Sean Love's Cars. I thought he would be so excited to Lightning McQueen and Mater, but seconds after this pic was taken he fled the scene.

All you need is faith, trust and little bit of pixie dust. (notice Tinkerbell in our hands) We were all soaking wet from the rain but I think the picture turn out really cute.

Sam enjoyed meeting Buzz Light Year. We caught him just as it started raining.... it was a down pour. Andrew and Sean played in the rain while Sam met with Buzz. People kept asking us if we needed an umbrella... I said "no... it is snowing in Chicago... the rain is fabulous!"

OMG... the Princesses.
Sam was ga-ga over the Princesses. Picture this... I am soaking wet and standing in line with all these other mom's dressed to the hilt with their daughters in gowns and wings and all glittery and here I am with Sam. We of course got to go ahead of the line and I think they thought I was there to see the princesses until they saw Sam's reaction. He ran right up to the bench and called Cinderella over to sit next to him. He was so bashful at first and grinned from ear to ear. He gave her a big hug and was so excited when she signed his book.

Then he saw Princess Aurora (Sleeping Beauty). He danced with her for awhile then took his seat next to her on the bench. I thought he was going to climb right into her lap. H blew her kisses and could barely keep his hands to himself. When it was time to leave I took Sam's hand and said "Let's go Sam" and in his clearest most assertive voice he said "NOOOOOOO" and then looked back at Aurora and batted his eyes.

He was not so thrilled with Wolverine but I think he was still a bit scared after the interactive Spiderman ride.

Sam and Niko

Sam really enjoyed Goofy each time he saw him. This was a special visit at Give Kids the World. Sam danced with him and gave him kisses.

Pluto also made a big impression. I would be willing to bet that Sam appears in several other families pictures with Pluto... I just couldn't keep him away. This was also taken at GKTW. The private meetings that they have set up each morning are so special. Sam got to spend more time with them and you could tell he was really enjoying himself.
I absolutely love this picture!

Big kisses for Mickey (at GKTW)

Special meeting with Mickey and Minnie.

Sunday, October 25, 2009

home again home again jiggity jog

I am sure that it will take several posts to completely fill you all in on Sam's amazing Make-A-Wish trip to Disney. It truly was the trip of a life time. Here is the basic run down..

first we had to get all of this...

into this...

Day 1 (10.8.09)
We didn't end up leaving Lindenhurst until about 1:30 on Thursday when we planned to leave closer to 10:am. We picked up Andrew at school and headed out. I had made reservations at a hotel near Atlanta GA. The drive was pretty uneventful but we didn't arrive at the hotel until about 4:25 AM. I think the check in clerk thought I was nuts. But we checked in, got a few hours of sleep and were back on the road by 9:30am.

we had some fun along the way...

Day 2 (10/10/09)
We arrived at my Aunt Ann and Uncle Ray's house in Brandon FL at about 7:30PM. The boys were full of energy. We ordered pizza and called it a night. The next morning after a dip in the pool we headed out to Ybor City for Cuban sandwiches. We rode the trolley and spend the day just hanging out. We had our orientation appointment at Give Kids the World at 7:45pm and that is where we got all our tickets/passes. It was about an hour and a half drive and we just made it in time. However the orientation was filled so I waited for the 9:00 session. In the mean time we were escorted to our villa (#123) and began to settle in. The villas are amazing... 2 bedroom, 2 baths with a living room, laundry and large eat-in kitchens. Every morning we were surprised to find special gifts for the boys (everything from games, stuffed animals, DVDs and much more). I will write another post just about Give Kids the World Resort... it is an amazing place. And yet another post about all the characters and special people we met.

our home sweet home at GKTW

Day 3
Today we started hitting the parks. I will say that we had more passes than we had time to use them (Thank you Make A Wish). We planned to meet Uncle Ray and Aunt Ann at Universal Studios/Islands of Adventure. It was very clear that it was going to be a very hot week. Everyone was telling us that it was unseasonably warm for this time of year and there were times when I thought the boys might melt. So water rides were top on our list. At the end of the day we realized that we never even made it into Universal Studios... we spent the entire day in Islands of Adventure (AMAZING and they treated us like VIPs) You see with our special passes we got escorted to the front of the line...we never waited for more than a few minutes for anything. This was a blessing due to the heat but even then a very special treat indeed. When we tried to pass over to Universal at the end of the day we found that it was closed for their Halloween Bash (to reopen later that night). Besides we were all exhausted and hot so we headed back to the villa and ordered pizza and salad.

Aunt Ann and Uncle Ray

a place to cool down

Day 4
Today we went to Animal Kingdom. Again another hot day...I guess you could say it was Africa-Hot (LOL) but the boys really enjoyed the Safari ride and the Lion King show was amazing. After a long day we headed back to GKTW for some ice cream and a dip in the pool.
tree of life
my boys in front of the tree of life

Day 5
Today we went to Sea World. We saw some amazing shows and got to feed dolphins and stingrays and again got some special service with this. I have some great pics that I will post soon of the boys feeding the dolphins. We then took them to the underwater viewing area and it was funny to see a few of the dolphins really take an interest in Sam's wheelchair. The checked him out up and down... or it could have just been that they were saying thank you for all the fish. The first tray of fish Sam was given he through right into the water...the whole thing. They gave him another one but the dolphins really liked the extra treat. The assistant also kept calling them over to us and had them get up on a ledge so that the boys could touch them and get a really close look.

Day 6
Today we went to the Magic Kingdom and the Epcot laser light show/fireworks. We knew it would be a long day so we let the boys sleep in a bit. We stayed at the park all day (more on this later) then about 8:00 we took the monorail over to Epcot for the show.

Day 7
We went to Hollywood Studios and Magic Kingdom again then back to Hollywood Studios for the Fantasmic Show. Andrew was chosen for Jedi Training Academy and he did awesome (more on this later). We played in the Bugs Life playground and had a great day. In the late afternoon we headed back to the Magic Kingdom to catch a few special things that we missed. It started raining and the boys played in the rain. So after we were completely soaked we headed over to meet the Princesses (this will be a whole post later). Sam loves Cinderella so this was a must. With our special passes we got right to the front but being the only mom in line with a boy... and not being dressed in a gown with sparkles I got a few looks (LOL). OMG...this was amazing and I could hardly tear Sam away.

Day 8
Sadly this was the day that we had to leave GKTW. We packed up our stuff, gave Sam's star to the Star Fairy and all the boys made their special pillows (more later). And as one last treat...after we checked out we used our complimentary passes to go to Aquatica (water park at sea world). Then we started making our way to Apex North Carolina to see Brad and Kim. We stopped for the night and got an early start.

Day 9
We made to Brad and Kim's... yea!!!

Day 10
We went to the North Carolina State Fair... seriously the largest state fair ever and I swear they deep fry EVERYTHING. A whole lotta happy!

Day 11
We headed up to Martinsburg WV to see Pat's cousin Jen and her family. We had fun with the Sampsells and I think the kids were over joyed to be out of the van

Day 12
We headed to Washington DC for our whirlwind tour of the Capital.

Day 13
Started making our way back to IL. We stopped in Cleveland for the night and hit the hotel pool.

Day 14 (10.22.09)
Home again home again!

I have to say that our entire trip was wonderful... we tried not to rush too much, we pulled over to see interesting things, we ate when we were hungry and we slept...well never. There is no way possible to get everything in one post to look forward to several more.

Monday, October 5, 2009

Hey MOM!... Look what I did...

I love these new forms that Sam is bringing home from school. Of course there is a note from the teacher also but these really allow me to communicate and interact with him. I am able to ask him about his day and he can point to the pics. The page is laminated and there is a bit of velcro to hold the pictures in place. Sam helps select the appropriate pics each day and puts them on his page which then comes home in his folder every night.

Sam has also started getting homework (which I love) and his teacher is working on literacy skills (LOVE this). His homework consists of a short book that we read to Sam several times and then a "book report" page with picture choices. I ask him the questions and he is able to respond by picking one of 2 picture choices. Sam is doing great in school and I can't wait to see all the new things he will learn this year. I am gearing up for his IEP the end of this month. In the past everyone has been on the same page and I am anticipating yet another smooth meeting (fingers crossed).

I am so proud of how far he has come. I learned long ago to never compare him to other children... Down syndrome or not. Sam is Sam... pure and simple. His delays are considered Moderate to Severe... basically, for me, that translates to less fighting for me when it comes to getting services for Sam. I believe that he is capable of much more than the tests would indicate but because his low scores I can usually have no problems getting this therapy or that therapy or whatever. Of course there are somethings that I wish they would focus on less... for example I have had enough of self help skills... OK... clearly my child has been taught how to remove his shoes and socks but can you also please work on putting them back on Pleeeeeaaasssse... and Thank you for teaching him how to take off his shirt to get ready for swimming but could you also please mention that it is not appropriate to remove your shirt in church or other public places (and for that matter just because you remove your shirt does not mean that you get to go to the pool)...LOL. Slow and steady wins the race!!! All in all I really like Sam's school placement and he LOVES going everyday.

the count down continues...

As we continue to count down the days to Sam's epic wish trip... we have a few preparations that we still need to take care of...

Several months ago, Andrew expressed some interest in wanting to get his hair colored. There was a breast cancer fundraiser at his school and he wanted his hair pink in the worst way. However he was going to be in Ben and Erica's wedding so we told him NO. He was persistent so we told him that he could get his hair colored before we went on Sam's wish trip. Of course he remembered our promise...and being the so very cool parents that we are (LOL) it was off to the salon we went. I love that he wanted to express himself this way... I told him that I didn't care if he grew his hair long or shaved his head or dyed it a new color each week as long as he was respectful and kind and polite... it was fin with me. Now if he had his way he would have come out with 5 different colors, but I put my foot down... I didn't care what color but it would only be ONE color. He wore his favorite tie-dye shirt so that he could show the colorist exactly what color he wanted.

He choose this deep red, almost magenta color and I have to say I absolutely love it on him. He is thrilled with it too. And now, with Disney in our sites, it will be even easier to spot him in a crowd...LOL.

Thursday, October 1, 2009

hi ho hi ho it's off to Disney we go...

We are counting down the days until Sam's wish trip. I am excited and apprehensive and excited. On one hand I am thrilled that my family has this opportunity, while on the other hand I cringe to think about what it really means for Sam to be a "wish child". As wonderful as this experience is, no one really wants their child to be damaged in anyway enough for them to receive such an honor. I didn't want Sam to be a "wish child", I didn't want him to be born severely premature, I didn't want him to have open heart surgery, I didn't want them to remove his entire large intestine, I didn't want him to be only able to eat through his g-tube, I was angry when he was diagnosed with Infantile Spasms, I cried when he learned to walk at the age of 5 1/2, I didn't want to "live" at the hospital for his first year and I hated having oxygen tanks stashed all over the house. I didn't want Sam to be born with and extra chromosome but when it came right down to it... I wished that he ONLY had Down syndrome. I worried about Andrew... and although I was so impressed with his maturity there is just something just wrong about a 3 year old knowing how to silence the alarm on a pulse-oximeter and program a feeding pump.

Over the years, Sam has been granted a Wish twice in the past... and twice I turned it down. Initially I was angry. Very Angry and hurt. I actually choked out the words when I asked his nurse if the real meaning of Sam being granted a wish was the Doctors passive-aggressive way of telling me that there was nothing more they could do and that they were quietly giving up on my child. I felt defeated. I was not in a good place to hear what the well meaning wish granters had to tell me and through hot tears I turned them away.

Several months later I was in Sam's hospital room waiting and hoping for a miracle. Sam had been diagnosed with Infantile Spasms. This diagnosis came like a sucker punch. Sam's newly repaired heart had given us a new little boy, a pink, active little boy who was starting to roll over and hold up his head on his belly, drink from a bottle, eat cereal and could for the first time in his life... scream. We were thrilled that he finally had the energy and stamina to scream. However, there I was sitting in a hospital room with a quiet little boy who had all the wind just sucked out of his sails. I wanted my happy baby back. He was not even able to make eye contact at this point and I was angry that all his hard work was gone in flash and the only meaningful movements that he was now able to do came in quick clusters of myoclonic "jerk" seizures.

So here, in this room I waited.

When I was told that treatment was to start immediately, and it was unlikely that my insurance would cover this miracle drug, I wept. I was to find out later that it would be covered but it was in this impossible waiting place, not knowing if my child would get the treatment he so desperately needed, that Sam was granted a wish for a second time. Desperate, I agreed to listen to what the wish granter had to say. I do not know who sent them or where they came from... they just appeared. It felt like only seconds had passed from the time I was told that my son had a rare and life threatening form of epilepsy to the time the wish granter appeared in Sam's hospital room. Nothing punctuates the severity of your child's condition when Make A Wish pays you a visit before you are even discharged from the hospital. I can remember asking her if Make A Wish could cover Sam's $10.000+ dollar medication. She very nicely told me no. I agreed to listen to the rest of her spiel, but it kept sounding more and more like a timeshare offer. Here I had just bled my heart out to her about how we couldn't afford our child's medication (and I remember being annoyed thinking that she didn't hear me) and although it sounded nice...where in the hell did she think we were going to get the money to pay for this amazing once of a live time vacation??? I stopped her and said that we were not interested. I never did hear the part about it being no cost to us..... but I seriously doubt that at the time I could have.

Jump a few years ahead and we have rejoiced with several of our friends who have had amazing Make A Wish experiences. All of whom ask why Sam was never granted a wish. After telling them that he was actually granted 2 and I turned them both down, I thought they were on the verge of hosting an intervention. They filled me in and I realized that not only was I about the densest parent there was but that I was really denying my children a wonderful opportunity far beyond anything that we could do for them. After about a year I finally was able to put down my own hang ups and put down my pride and come to terms with the fact that this is not about me... it it about the boys...it is all for the boys. So I took a deep breath, I logged on to www.wish.org and I nominated Sam myself. GULP. DOUBLE GULP. To my surprise I got a phone call from Make A Wish almost immediately. I think they must have people just sitting there waiting to jump on the phones as soon as emails come in. And wouldn't you know it... Sam was still in the system the process had begun. This time I welcomed the wish granters (Deb and Bill Motzer) into our home and hung on every word they had to say. This time I experienced an entirely different set of emotions and instead of feeling raw and exposed I was overjoyed and deeply touched by the gifts that were being presented to Sam and our family.

I will admit I have felt a bit of guilt... all considering Sam is doing sooooooo very well and does not fit my preconceived notions of what I thought a wish child was (ie he does not have a trach, or cancer, or a transplant etc). A child only needs to be living with a life threatening condition... not be terminal...to qualify for a wish. AND every child who qualifies for a wish is granted a wish. Because one child gets granted a wish it does not mean that a potential wish is taken away from another child. Wishes are not granted based on financial information, need, or other factors.... only the fact that the child is living with a life threatening condition. A parent, doctor, nurse, therapist, teacher or para professional can nominate a child. To this day I do not know who nominated Sam the first two times.

So as I begin packing for our amazing Disney wish trip, I find myself thinking about all the things that I will NOT be packing... like tanks of oxygen for example. I am so excited to see the looks on the boys faces (well except Sean because he will be scared to death...LOL) when they see Mickey Mouse and the other characters. Sam loves Cinderella and I can't wait for him to see her castle. I can't wait for them to just be kids... not sick kids or kids with a sick brother... just kids at Disney. We are driving (our choice) and so I raided the dollar store and now I have a secret stash of goodies that I will pull out when a crisis arises. And you know that you really have not lived until you have driven 20 hours in 2 days with 3 children... needless to say I am planning on a few melt downs, lots of laughs, big smiles and one happy family.

So with all that being said... I am so excited to be taking my kids to Disney and for our family to be taking the trip of a life time. It is humbling to admit that this is something that we could not do for them on our own... perhaps in time but not right now, right now while they still believe in all the magic of Disney. I am so thrilled that Sam will be able to walk up to meet Mickey Mouse under his own power on his own two feet. And I am over-the-moon about all that the Make-A-Wish Foundation does for special kids and their families.

Blessed and Lucky are we!