*Chapter 7* - "The Wish"

I am sure by now it is evident that Jake will have a different path from what we thought was “normal”. Our imaginations could not have even begun to contemplate what Jake would give us next. It all started at one of his doctor’s appointments when they mentioned to us if we had contacted the “Make a Wish Foundation”? I said no, I had seen on the news kids who were terminally ill be given these amazing experiences by the kindness and generosity of others, but had never put Jake in that category. They set the wheels in motion and made some calls for Jake and told me how to follow up, at first I felt awkward and a little guilty because I always had it in my mind to be self sufficient and I still struggled saying “terminally ill”. But, then I realized this was for Jake and I would do anything for Jake. We made the calls and the foundation let us know that Jake was too young to qualify and I said that is ok, his doctors were always concerned how long Jake would be able to make it, but they said they would keep in touch with us to see how things were going.

In the meantime Joel and I were determined to give Jake all we had and more so when an opportunity to go to Hawaii for work for 10 days in March of 2004 came available we jumped on it! We weren’t sure how we were going to pull this off but decided we would find a way. We wanted Jake to travel and experience as much as he could so we made all the preparations to take Jake with Joel and myself to Hawaii. The doctors thought we were crazy and would have helped us make arrangements for Jake to stay home so that Joel and I could go alone, but that was never an option for us. It was hard to get all of the necessary equipment for Jake to go a new wheelchair, extra luggage with special food, syringes and a full suitcase just of medical supplies but we did it, and oh how Jake loved it!! During the day Joel had to work but Jake and I would be outside on the beach, swimming in the pools, putting our toes in the warm sand, and breathing in warm moist air. Jake loved the long walks, having tastes of pure fruit smoothies and our favorite coconut syrup on our pancakes for breakfast. We took him on a catamaran to go whale watching and as he was giggling with the motion many of our co-workers were spending there time over the sides. A sweet friend held Jake on the boat while Joel and I went snorkeling by the reef, it was amazing. I think one of Jake's highlights was the Polynesian Culture Center where we spent the most of our day and then finished it off with all of our first Luau. Jake loved to feel the fire and to hear the music it was wonderful to be able and share these wonderful moments with Jake and see his little smile! It was also very memorable being able to visit Pearl Harbor and recognize all we have been given and what many people truly sacrificed for our freedom. We still remember looking down and seeing the sunken submarine and oil still in the water. I think Jake did much better than expected and other than our kids at home we would have wanted to stay longer.

This was the year for Joel to see how many different places he could take Jake to experience, and this worked great since Joel traveled for work and it worked that Jake and I could go with him. So in November Joel needed to go to Cleveland Ohio for a truck show. He could go early and work and then Jake and I would fly into meet him and we could go visit many of the Church History sites, it sounded great! But it was fall and Jake again had started to decline in health, but we had a renewed desire to get Jake to see and experience all he could. So I had no idea as we had booked our flights ordered extra equipment and started making all the necessary preparations to go that it was next to impossible to have oxygen on the plane for Jake? As I started working through the proper channels I was treated like I was trying to take a bomb aboard. Again this was Jake and there was nothing we wouldn’t do for him. So after many long battles we secured Jake his monitors and oxygen aboard the plane. We had oxygen ordered to be delivered to our hotel rooms along the way as well. It was a good thing because on the flight over Jake’s desaturation levels (his oxygen levels were dropping) but Jake has always been a fighter and used to breathing with less than any of us do and managed to do great! I was always nervous but Jake was just happy to be here. It was great to meet up with Joel and start on our trip with Jake. It was the first time we took Jake out of the country as well; we went to Canada to see Niagara Falls. We stayed in Canada for the night and walked around and had a great dinner and of course took Jake swimming. We did not have the best planning because on our way back across the boarder we did not have the proper identification for Jake, we had to take him into security – after they took a look at him and heard our story they let us back across the border, I guess they figured Jake was not the kidnapping type and he was with both of his parents- it is always an adventure.

We continued on the rest of our trip heading to Palmyra and visit the sites there. I still remember coming to the 4 way stop in the middle of town and seeing 4 different church denominations on each corner. It was as if nothing had changed since Joseph Smith was there and asked which church he should join. We were able to go through his home and stand in the same place with Jake where the angel Moroni visited Joseph as well. The highlight of the trip was pushing Jake into the sacred grove. It might not have been the best day as the weather was kinda cold and a small rain was coming down. But we were the only people in the grove it was silent except for the crunching of leaves that had changed colors and just starting to fall off the trees as Jake's wheels rolled over them. We examined the trees and saw many that had the scars of being tapped for maple to make the syrup, there are little benches for you to sit and contemplate as we did this we looked up and the trees seemed to go on forever and touch heaven. It was then we said our own prayer just as Joseph Smith had so many years before and was answered by a visit from our Heavenly Father and his son Jesus Christ giving him direction for his life. We poured out our souls at that place where they had visited and quietly pleaded for direction in our lives to help our son, begging for a change that what we were being told could be altered that Jake would be healed and live a long life with his family. I waited and waited but did not receive a visit (you can always ask) but we did have an incredible feeling of warmth and love. We may not always get what we ask for but I received an increased faith that my Heavenly Father and brother Jesus Christ knew the beginning from the end and I would have to have faith and continue on with trust in them. We took some leaves as a reminder of that special day and the feeling we were given.

After visiting more of upstate New York and all of the church sites we headed to New York City, it was great and Jake loved every moment of it, after all it is not every day you have mom and dad all to yourself. We went on a bus tour of New York and took Jake to Times Square where the lights and sounds never sleep. But the highlight on that location was visiting the statue of liberty. After the situation with 9/11 you were no longer allowed to go up inside the statue and tours of the inside sell out months in advance, but because of Jake they let us in and we saw replicas of the statue and the copper that the statue is made of, it looks like a very polished gold. There was so much history it was amazing to be able and see, touch and experience it all for ourselves it was a once in a lifetime chance and we were grateful to have such a wonderful opportunity- Jake did that a lot every where we went he was able to get just a little bit more and make the experience just that more special. Thanks Jake!!

When we returned we had some calls from the Make a Wish foundation and Jake was ready at the minimum age of two and a half to receive “his wish”. So an appointment was made for them to come “interview” Jake and see what he would like to do. The whole family was so excited for Jake; little did we know again what Jake would do for us! When the workers came and saw Jake they ended up interviewing the entire family, since Jake cannot verbally communicate we talked about things he liked to do. Swinging and movement came up as favorite, we talked about how he enjoyed lights, music being with his family, being able to move in the water and being warm. We talked about his sensory likes and dislikes and then came a wonderful proposal, Jake was offered to take his entire family on a vacation of a lifetime, through the Make a Wish Foundation we would all travel to Orlando Florida to stay at Give Kids the World Village and receive a week long adventure to Disney World!! We were all so excited we couldn’t believe it! Jake’s wish to take his family on this amazing opportunity was irreplaceable. With the expenses of hospitals, doctors and prescriptions money had become a bit tight, but even if you had all the money in the world you could never duplicate what it is like to receive a “wish”. Our wildest dreams could not prepare us for what was in store; we had never before received such an amazing gift. They helped us every step of the way we started packing and making all the necessary preparations to go and you would be surprised how they are able to get oxygen on a plane much easier than I could. The day finally arrived as we loaded up our suburban with suitcases, wheelchairs, monitors, syringes, special food for Jake – we were packed to the roof and made our way to the airport it was cold when we boarded the plane in Utah for our trip from November 29 - December 5 2004. The flight went great Tyler, Janessa and Monique all giggled when the planes wheels left the ground and their tummies were filled with butterflies. They each had a little back pack specially packed with games and cards to begin their 5 hour flight.

Everyone did great and on the other side there was a kind face waving a sign in the air with Jake’s name on it waiting to pick us up. The moment we walked outside we knew it was going to be a great week! It was a beautiful warm sunny day, the kids were so excited and it just got better from there! We were driven to Give Kids the World Village where we would be staying. This is not a place you can book- you have to be invited to go and stay, and it can only happen once in a lifetime. Like its name it is amazing! The living conditions are fantastic you stay in your own mushroom home equipped with rooms a huge Jacuzzi that fit the whole family inside the bathroom there is a little kitchen and family room every night a bunny could come read you a good night story leave you with a stuff animal and tuck you in. But that is not all in the village there are paths that lead from the mushrooms to an ice cream parlor where you can invent and customize your own ice cream creation, Janessa won with the best banana split ever! Also there is a merry go round, an arcade, a large boat you could stand on to go fishing, a really pony ride, an amazing dinning hall where clowns would come and tell jokes make balloon animals and so much more, so many things you could not count them. But maybe the best was the star room where a special ceremony was prepared and Jake's star was hung with all of the thousands there twinkling in the light for the special wishes. It takes a thousand volunteers to run the village, and there are so many kind and loving people there helping and serving one another it felt as though you were lifted off the ground and half way between heaven and earth. As we were getting checked in Jake was given his own Mickey Mouse stuff animal as a memory for his wish with a small button he wore that let everyone know that this was Jake’s special “wish”. With that button every one he came into contact with was overjoyed in going the extra mile to make his week unforgettable, and it was!!

I cannot even begin to explain the week we all had as a family. Every day was filled with such fun, laughter and love. We started at the Magic Kingdom and spent 3 days there going on rides, rides and more rides having ice cream and cotton candy having a special private visit with each character taking pictures and making memories to last a lifetime.

Sea World was also a hit with perfect seats to see the real Shamu, go on rides, watch lots of shows with the animals and yes more cotton candy. The Animal Kingdom allowed us to slow down a bit and enjoy the train rides and seeing all of the wildlife in their natural habitats, and yes enjoying more cotton candy. We had to throw in Universal Studios as well so Tyler could get a hug from his favorite super hero Spiderman WOW! More rides until we couldn’t go on another ride. Then came Joel’s possible favorite EPCOT center – we always wanted to give Jake the world and here we were close.

Now the entire family could travel to each individual country and be able to experience the best thing about it “the food”, yes we had a sampling from every country!! Now we really couldn’t go on any more rides. We had time to stop and an artist colored a picture of Jake to capture and save this memory. It was a little difficult as he was done and handed me the picture- it looked just like Jake, but one thing was different Jake’s eyes were looking straight at me. I hadn’t had Jake looking straight at me since he was a baby. His eyes were always looking up. There were a lot of medical reasons why Jake’s glance was always up and to the right, but I like to think he was just gazing at Heaven communication with angels while he was down here with us. Jake was always so close to the other side and when you were with him you could always feel it! All along the way every where we went people were so kind, the staff at each location went out of there way to make it an incredible experience for Jake, and it was!!

Jake’s wish was complete; he gave us all the time and memories to last our life times. How did he know that we would need this experience more than him...? That in a very short time ahead we would look back and remember the laughter, remember the fun, remember the love that we all shared. It would get us through hard days and long nights. But for one week together as a family at one of the happiest places on earth everything was great, we were able to be a “normal” family all together on a vacation of a lifetime.

Again, Jake’s selfless love blessed us more than what we could do for him. He didn’t need the rides, the cotton candy (although he did stick his tongue out) meeting every individual princess, character, super hero you could think of- but, Janessa, Monique and Tyler did and their brother made it all happen for them. It was a moment in time where everything just stopped for us and we had so much fun! The love that everyone felt and shared will stay with us all forever.

Thank you Jake for giving your “wish” to us and memories of joy and happiness that will never leave.

A Child Loaned
“I’ll lend you for a little time
A child of Mine,” He said,
“For you to love the while he lives,
And mourn for when he’s dead.
It may be three or four years
Or twenty-two or three.
But will you, till I call him back,
Take care of him for Me?
He’ll bring his charms to gladden you,
And should his stay be brief,
You’ll have his lovely memories
As solace for your grief.

I cannot promise he will stay,
Since all from earth return,
But there are lessons taught down here
I want this child to learn.
I’ve looked this wide world over
In My search for teachers true,
And from the throngs that crowd life’s lanes,
I have selected you;
Now will you give him all your love?
Not think the labor vain,
Nor hate Me when I come to call
And take him back again?”

I fancied that I heard them say,
“Dear Lord, Thy will be done,
For all the joy Thy child shall bring,
The risk of grief we’ll run.
We’ll shelter him with tenderness,
We’ll love him while we may,
For the happiness we’ve known,
Forever grateful stay.
But should the angels call for him
Much sooner than we planned,
We’ll brave the bitter grief that comes
And try to understand.”