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Old 07-23-2007, 12:17 PM   #1
5dwarves
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Our Son's Wish Trip - A Year of a Million Dreams, and One of Those Dreams is Ours.

I am doing my pre-trip and actual trip report here for our wish trip to Orlando, and will hopefully be doing the “live feed” trip report at night when we are recuperating from all that fun. Here it goes….hope you enjoy it as much as we are surely going to be enjoying ourselves! Since we have some wi-fi locations at GKTW (Give Kids the World, our resort), I will be putting forth my best effort to do daily updates while we are there.
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Old 07-23-2007, 12:24 PM   #2
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First of all let me introduce the family….We are:

DH, Jim – Professional computer nerd, published even. Formerly a non-nerdy cool guy football player, (how is that for irony). Wants to open a bbq business one day or at least compete on the BBQ circuit, makes REALLY good ribs, brisket and smoked pork shoulder, but thinks you need a redneck, “hickafied” name to be successful…started calling himself Billy Joe Jim Bob sometime ago…thinks he is funny; heaven help us.
DS 14, Connor, 14 going on 30
DD 11, Hannah, not dating until she is 30
DS 8, Adam, my “wish” kid
DS 7, Jake, probably living with me till he is 30
DS 5, Nathan, can count to 30
And me DW, Elisa, stay at home mom who wishes I was still 30

Adam, the wish boy of the hour, was born 13 weeks early. He is a surviving twin. His identical twin brother, Luke, died at birth. To look back at all that happened 8 years ago and say it was rough, is truly an understatement. I am thankful that God’s grace is sufficient and that He is there with us in tough times and in good times. I am thankful we had wonderful doctors and wonderful NICU nurses. I am thankful that I read books on having multiples when I was pregnant. I was thankful that I read the chapters on what to do in the event of the loss of one or both twins, even though I was thinking that nothing bad ever happened to me, so I didn’t need to read those chapters. I am thankful that Adam made it through his severe pre-maturity, and I am thankful that after several hospitalizations and second opinions, someone finally accurately diagnosed his degenerative liver disease. It was not the news I wanted to hear; news that my son’s liver would eventually fail, and without a transplant he would die. I was comforted though, knowing that there was treatment; that his diagnosis was no longer a death sentence. Had it been my brother who was born with this disease, biliary atresia, he would have died as an infant. It was my son though, and medicine had come a long way. His chances were good, but the road was going to be rough. Boy, oh boy, was the road ahead going to be rough.

My marriage with my children’s dad ends after 14 years, and I am pregnant with Nathan, DS5. I was stunned to hear that over 85% of marriages where there is a special needs child, involved end in divorce. Adam’s situation was not the cause of our divorce, but the stress seemed to magnify everything else. Again, though, God’s grace is sufficient…and the kids and I move on literally and figuratively…off we go to TX from the East Coast. After four years, I ultimately remarry, and now DH Billy Joe Jim Bob (just Jimbob for short) is my kids’ dad. Their biological dad is not involved and only sees them 1-2 weekends a year. Jim has done far more to provide for and nurture them than any step dad could ever be expected to do. I was hesitant to remarry…when I finally started dating again I loved to drop the “I have 5 kids bomb” and watch them squirm…LOL….Jim was brave enough to stick around. My next big bomb was “how can I be sure if you will love my kids like they were your own.” His answer was “I’m adopted…if someone who was not my birth parent didn’t love me when I was a child, then no one would have loved me...I will love the kids like they are my own, I already love the kids like they are my own.” GOOD ANSWER! We marry and we move to AL to DH’s hometown, for his job.

So….that is who we are….and on the next post, (as I educate myself on posting photos) is what we look like (or at least what we looked like a couple of years ago). We will endeavor to get a new family picture that includes children and parents while we are in Orlando….everyone under 15 is much taller now.
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Old 07-23-2007, 12:43 PM   #3
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Wow--great start & your trip is coming up. I hope you all have a magical time & I can't wait to hear more!
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Old 07-23-2007, 12:52 PM   #4
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Great start! I can't wait to hear more. Is this your first family vacation? What a great DH you found. I bet you are so excited...just 5 days!
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Old 07-23-2007, 12:56 PM   #5
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A live report, so exciting.
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Old 07-23-2007, 12:56 PM   #6
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Originally Posted by pixe*dst View Post
Wow--great start & your trip is coming up. I hope you all have a magical time & I can't wait to hear more!
Thanks! I have more written, I just need to figure out this upload photo thing....my husband is the tech guy and unfortunately he is not available right now....
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Old 07-23-2007, 12:57 PM   #7
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Great start! I can't wait to hear more. Is this your first family vacation? What a great DH you found. I bet you are so excited...just 5 days!
Thanks...he is a great guy,and he would be the first to humbly tell you so ...We have gone to visit my parents once, but this is our first family vacation together...we are all very excited!
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Old 07-23-2007, 01:03 PM   #8
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Gotta wait on the photos

Bummer...my file sizes are too large...I will wait on it for now (don't worry, it will come) and get back to the TR
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Old 07-23-2007, 01:07 PM   #9
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Hello! Yay a trip report!!! Only five more days to go... are you ready? I can't wait to read about your trip!!!! I will anxiously be waiting each night for your report. We will understand though if you are a little tired and not up to reporting! 5 kids + WDW =
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Old 07-23-2007, 01:07 PM   #10
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How Adam’s wish came to be….

It was April last year, Adam was no longer attending school, he was just too ill. His spirits were good though. We waited….then one day, on a Friday, the phone rang. It was almost surreal. The transplant office had called. There was a matching organ…come right away. I say, we are 2 hours away from the hospital…she said “that is fine…come now.” He and I kissed everyone good bye, DH stayed home and watched the other 4 kids, and made calls to family and friends and Adam and I drove to the hospital…feeling nervous, happy, fearful and relieved all at the same time…that was me…Adam was sleeping. Anyway, off we went The surgeon was doing another transplant when we got to the hospital. Adam was admitted to the floor and I was told that the surgery took at least 6 hours and the surgeon wouldn’t finish with the current surgery until after midnight. They weren’t sure when Adam was scheduled and the donated organ was in route from another state. Adam’s surgery would be in the morning. Okay…that is good…let the doctor get some sleep, a well rested doctor is a good thing, and Adam settles in for the night; I sort of do too. Adam’s surgery goes well. Adam is doing well….I will skip all the bumps in the road from last year; there are always bumps in the road btw…. his liver is very healthy and I am very grateful…to everyone.

That was last year…this year Adam is having tummy troubles. We wind up in the hospital. Tests can’t figure out why he is having these tummy issues, but his liver is good…We are in the local hospital for 3 days and are ALMOST out the door when our pediatrician comes to me pasty white…she was going to discharge us and put him on immodium…the liver surgeons have other plans though. Tummy troubles like his without a known cause can be bad…very bad. His body may be rejecting, but rather than attacking the liver, it might be attacking other areas…this may be colon cancer…go to Children’s immediately, they are expecting us. I take a deep breath and quietly say…please God no….He has already been through enough…please, please…no. I get copies of all the labs and off we go; to the house first to pack for an extended stay, then to Birmingham … to Children’s. I will cut to the chase…THANK YOU GOD….THANK YOU!!!! No cancer…just run of the mill tummy troubles…magnified in a special needs child. Everyone is wonderful…the streams of doctors (man…they look young these days!) the nurses, the housekeeping people, the child life people. We are treated very well, once again. Thank you Children’s!

That is when the wish starts coming into play….It is April. I am in the middle of legal issues with my ex concerning child support. Facing Goliath as it were. I am preparing to make the drive back to VA for a court date, when I get this envelope in the mail from Magic Moments…Adam has been selected for a wish, the wish is for children who have life changing illnesses, (in other words, don’t get upset by this letter, we are not telling you he is terminal.) Not all wishes are granted…you were nominated by JF…fill out this paperwork and return it asap. WOW! Out of the blue…what an opportunity! What a blessing…Who is JF?...LOL…yes, I had no idea who the nurse was who nominated us. I called Adam’s liver transplant coordinator, Nurse B, and she told me who JF was…a pediatric liver nurse case manager person extraordinaire…I am not sure if that all fits on her business card but I am sure it says something just like that…anyway she is someone who we have not met yet, amazingly enough. Even the lady at the snack counter across the street from the clinic knows us, and our snack preferences (me, Snickers and Sobee Strawberry drink – I call it Lizard juice because of the gecko on the bottle, and for the shock value with my children…Adam, skittles and any soda he thinks he can talk me out of.) Considering we know EVERYONE, how could there be someone we haven’t met yet. Adam’s last stay in Children’s must have triggered all this. Wow….blessings coming out of struggles…again…WOW…one more time….WOW. I fill out the paperwork, send it in, and then don’t think about it again. I go to VA…prevail in court…woo hoo….then back home. Three weeks or so go by…”My name is DF and I am a volunteer with Magic Moments, I am very pleased to tell you that Adam’s wish has been granted…” Shocked silence on my end accompanied by a huge smile, then thank you very much. This means the world to all of us….DF is a lady pastor….she has just recently started doing volunteer work with Magic Moments….she loves it and she is thrilled to work with us, we are getting a package in the mail…fill out all the new paperwork asap and the ball will get rolling…Thanks DF, thanks JF….You have been awesome.

I call DH and we both do the happy dance over the phone…”We’re going to Disney World!!!!” I tell Adam when he gets home from school…his response…”COOL…can I see Woody and Jessie when we are there”? Well, we will see if we can make that happen little man!
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Old 07-23-2007, 01:09 PM   #11
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A live report, so exciting.
Trust me, I surely hope so! Thanks for checking it out.
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Old 07-23-2007, 01:11 PM   #12
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Originally Posted by Iluvmickeymouse! View Post
Hello! Yay a trip report!!! Only five more days to go... are you ready? I can't wait to read about your trip!!!! I will anxiously be waiting each night for your report. We will understand though if you are a little tired and not up to reporting! 5 kids + WDW =
Yes, I am not sure if we will be posting every night or not, but we are taking a break during the heat of midday...that might be a good time to do it. I just need to stop being technically challenged and figure out this photo thing....I saw where you have dates for your trip now...9/07? Is that right?
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Old 07-23-2007, 01:15 PM   #13
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Give Kids the World

We got our packet and heard about Give Kids the World, GKTW, for the first time. For those of you who are unfamiliar, GKTW is a resort that was founded by a former hotel owner. He heard of chronically and terminally ill children who wanted to go to Orlando but couldn’t afford to or arrange to…he wanted to change that and GKTW was born. Our accommodations, breakfast and dinner are free, as are all the other benefits. Things like horseback riding, carriage rides, train rides, carousel rides, miniature golf, fishing, arcades, movie theatre and ICE CREAM!!!!

Originally we wanted to stay on site at WDW…I wanted easy access to the room for naps and down time…I wasn’t sure if it would be easy to do that off site. I spoke with the Wish Coordinator at Magic Moments and she told me how much all the other families enjoyed staying at GKTW, she told me we received a ticket package that included 3 days at WDW, 2 at Universal and 1 at Sea World and that there were other local Orlando attractions that gave GKTW visitors free or reduced admissions. She further told me it would be easy to get back to the room for a mid day break because they are only minutes away from all the important things like WDW, Universal, SeaWorld, Wal-mart…LOL…okay, okay…I’m sold…let’s go…I give the coordinator several dates and she checks with GKTW…our second set of dates are available and we are locked in for July 29 to Aug 4. We have decided to drive. My DH doesn’t like to fly, and the whole contagious TB guy on a plane has me a little paranoid too, considering I have an immuno suppressed child. It is 10 ½ hours from door to door (with 5 kids in one enclosed car…) Sanity prevails, and we are sure it will be best to take our time and make it a 2 day journey. Time to plan the details.
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Old 07-23-2007, 01:19 PM   #14
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This is the best story and you have barely even started!! I can't wait to hear more
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Old 07-23-2007, 01:27 PM   #15
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This is the best story and you have barely even started!! I can't wait to hear more
Thank you! I am hoping to add visual aids soon...man I wish I had paid more attention in computer class.
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