*Chapter 9* - "Live to Live, not Live to Die"

Our day started at Primary Children’s Hospital at yet another appointment. Jake had started jolting and making jerky movements with his eyes blinking and sometimes what we thought to be a laugh followed by a scream and crying. I had never seen anything like it before and a little bit of me was excited because he was moving and I thought wow, he is starting to get better! But there was a nagging in the back of my mind that something was not right- if Jake were getting better why would he cry? I started calling my team of doctor’s and tried to explain what I was seeing and as always the answer would come “well lets watch it” I was not a very patient person when it came to Jake and did not like that answer, so I started video taping the times that Jake would have these episodes, it was really hard because they were so short and Jake never gave notice when they would start so I just kept my camera with me at all times and was finally able to get some on tape. I noticed that the episodes were very short but were happening more and more frequently, eventually Jake would start falling asleep after they happened. All of the excitement I once had left me and again somehow holding Jake as he would fling around and laugh and cry all in the same breath when I looked deep into his eyes I knew something was wrong and thought to myself what else could it be, what does my little boy have to go through. Whenever there was a pause and things were good and I was able to feel a moment of peace, I knew during those times you stored up energy and refilled your cup because it does not last forever. So once again in the neurology department of the hospital I was showing them my video tape and notes on how many times a day it was happening and how long they lasted. It didn’t take long for the doctor to recognize what was happening as I was informed that Jake was having seizures. My mind raced as I had so many questions I had no knowledge of seizures why do they happen, how does it feel, do they hurt, how can I stop them? An EMG was scheduled to have a closer look at his brain and see what we were dealing with. Immediately we knew it was not good- Jake was seizing 24 hours a day he had constant “firing of the neurons” even if he could this activity would not allow him to collect his thought or even have anywhere close to a normal brain function. On top of that he was having grand mal and other variations of seizures at least 10 times a day which put him again on the severe radar. What if he had a seizure and I couldn’t stop it or he could not breathe or swallow? It was another reason we were given that Jake would not make it long. Our sweet doctors came and tried to answer all of our questions, but just as they answered one I would think of ten more after about 2 hours we received our first diagnosis for Jake he had Epilepsy. I had always thought I would feel better if I knew what Jake had or what had caused it, but at that moment I learned it does not feel any better at all when your doctors can or can not tell you what is wrong with your child or what kind of life they would have waiting for them. I wanted to try and use this information in any way possible for good. I just kept going over and over again thinking that now at least we know this it could give us clues to what was really happening in Jake’s brain and how to make it better. I finally had to accept that this was only more bad news for Jake and to the extent of brain damage he has, my heart sank to new levels. With the information at hand I scooped up my little son and very carefully starting unwrapping the bandages that very tightly held the probes attached to his head in place. Attached to each probe (which were more than I could count) was a glob of goop I called it and you had to go so slow to get the probe out without pulling his beautiful thick brown hair. Jake had such great thick hair ever since he was a baby- which in most cases you are so excited and love! In Jake's case it seemed to even be a trial as having to have shots and so many tests done on the brain if he were a bald baby it would have been easier for him, but none the less we loved running our fingers and massaging his head of hair. After we left the hospital I would go home and bathe him and soak his hair in conditioner to get the goop off. Well as always new medications were prescribed and for what seemed to be forever we could never get it just right, he was on so many different kinds of medicines trying to help all of the symptoms he was dealing with until one day I looked at him and he was just laying there looking “stoned” for lack of a better word. I went to the internet again and starting researching for myself to see what kind of side effects Jake was dealing with. I came to the conclusion that what was better being a vegetable from his brain disorder or being stoned by the drugs he was on trying to help his brain condition. As the months went on Joel and I grew more concerned as we looked at our son and thought this is no life at all! About this time through our research and contacting other hospitals throughout the country we came in contact with an organization called the Leukodystrophy Foundation. Although Jake had been tested for several Leukodystrophy’s and they had all came back negative he resembled most of the symptoms of this disease and most of the medications he was on would be treating him for this same disease. I started communication with a parent support group and leaders of the organization we noticed so many similarities with our children. There were good things and bad things but I thought at least I would know what it was and how to proceed with better information to make the medical decisions necessary for Jake’s survival.

There was an upcoming conference taking place in DeKalb Illinois just outside of Chicago were doctors who specialized in all Leukodystrophy from all around the world who were basically leading experts would come once a year to collaborate with one another and do case studies on children. Jake was accepted by the doctors to be a case study! What a marvelous opportunity after all of this time we were finally going to know what happened to Jake but more importantly we were going to know how to fix it. After all we were meeting with some of the most intelligent people on the planet! Doctors from the Netherlands, Amsterdam, and all of the leading Mayo hospitals in the United States, surely collectively they would be able to help Jake! The only problem was they would not allow us to take Jake- how in the world could I ever leave Jake; in my mind it could not be done. What a dilemma I had in front of me I was required to leave Jake for 3 days to go and hopefully find answers to save him. I knew deep down what I had to do I always promised Jake that I would do anything in my power to help him I just never thought that meant leaving him even for a minute. I started preparing the documentation right away the x-rays, MRI, labs and doctors notes that were about three inches thick were mailed to the foundation were all of the doctors would have access to look at Jake medical life on paper. Also all of the preparations were made at home as well to have all of the children taken care of and especially Jake. I could never have gone if I did not have such a loving, caring and involved extended family. My sisters all jumped in prepared to help in any way and of course I have the best parents on the planet. The only person I could truly leave Jake with and know he was in the best hands possible would be my mom. How she and my dad loved my little Jake and have been by our sides every step of the way. Jake knew his grandparents and would “perk up” when they were around. I felt like I was putting a great deal of pressure on them but they never complained or would ever even give you a glimpse that it was an inconvenient in any way. You could just call my mom and dad at any time and it did not matter what they had planned they would drop everything and be there in a flash to help me at any time. Most times you did not even need to call they would just show up ready to help. I think my mom’s day would start by checking in with her kids to see what any of them might need that day. I was truly blessed with an amazing family and all of the tools necessary to make it through our challenges, even my biggest one yet leaving Jake.

Well the day arrived and with many tears Joel pulled me away and somehow we made it to Chicago we were picked up in a limousine with other people headed to the conference. Some had the disease themselves, many parents just like us from all of the United States who’s children were all ready diagnosed with a specific Leukodystrophy and every year they come back to learn what new developments were in the works, and also they required no children because they felt very strongly that parents that take care of a child with this disorder need a few days every year to have a short break from them. This was very hard for me and I would never give in to needing a break, but Joel did enjoy the time he and I had together. There was a big joke that the new people they always put on the outside wall of the hotel because every night a train goes through the corn fields and toots its horn and wakes everyone up. Well the joke was on them for the next morning they asked how did you sleep and we said great! Didn’t you hear the train last night, Joel and I were like what train? For the first time we had both slept through the night that had not happened since Jake was born. I was like a sponge wanting to take everything in and learning as much as I could, I was on a mission to come learn go home and fix Jake. We were able to sit and talk to many parents and learn from their experiences what has worked for them and what has not. We talked about medications, doctor visits, feeding issues, family issues, and school issues but believe it or not one of my favorite was about shopping. I learned that there is a whole world out there with specific toys and movement opportunities and specialized strollers that I had no idea about. Catalogues and on-line shopping, which I had never done before it, was going to be my new hobby for Jake and I. Well the appointed time for Joel and I to have our one-on-one meeting with all of the doctors had arrived. We went into what was like a big board room with a large oval table in the middle of the room surrounded by the best minds in the world and 2 seats in the middle for Joel and me. My heart was pounding and I was breathing so heavy, this was it. I had prayed for this day and it was finally here! All of Jake’s films, tests and paperwork were on the table and specific doctors had different sections and it began. We gave a verbal history of Jake’s life and all he had been through; I shared pictures of Jake and the different things he struggled with. I felt my 3 years of studying had not been wasted as they would talk and ask us questions I could understand and know how to answer and reply. I was so excited things were going great they recognized his symptoms understood all of the lab reports and discussed amongst themselves some information asked us a few more questions and then put away the paper work and the leader of the group said….

Joel and I were (mostly me) squeezing hands so ready for the answer- Jake does not have a Leukodystrophy, they did not know what was wrong but they knew for a certainty that Jake did not have this disease. I think my heart stopped my mouth dropped open and I was not sure how to respond as the tears immediately started flowing I tried to stop them but I couldn’t. They reassured me that Jake had been in amazing care and the team of doctors I had in Utah were experts in their own right. That there was nothing more that we could have or currently be doing for Jake. They were so sorry but as much as they knew science had not caught up with what Jake was experiencing in his brain. They were so kind and gave us some information on specific symptoms but all agreed there was no cure or treatment for Jake. Many were surprised as our own doctors were how Jake was still here and had not passed away, and asked if we would allow a small biopsy taken of Jake’s brain to be studied- maybe even when he passed away. Jake truly was one in a million or more. The next day or so was a blur to me, why was I even there I just wanted to leave. All of these people around me know what they have and how best to proceed with life however short it may be, they know! I soon learned at the banquet that night that it does not matter if you know or not as they read all of the obituaries of members that year alone. Some children some dads wondering if they passed on a gene to their children other older people no matter who you could never plan or be prepared enough to lose a loved one, but losing a little child seemed for all to be unbearable.

Somehow we made it through the rest of the conference, it was difficult when the other case study families that were selected were given their conclusions, and with excitement everyone was asking about each others results. The tears came every time I answered we just know what its not, but we knew deep down it was not good. Joel took this opportunity to have some one on one time with me (which had been absent in our relationship) which was great. He is the one who strengthened our marriage and found the energy to want to do something fun together. So while in Chicago he took me to miracle mile and looked at the shops, we went to Lake Michigan which looked like the ocean to me and we were in the water for only a short time because it was cold even in the summer but I loved the beach there, and my all time favorite was going to dinner on the top floor of the John Hancock building we were given a window seat and were able to view the whole city as the building turned around for us to see all of Chicago. We had one our all time favorite meals and when we were done asked how it was prepared they somehow stuffed the steak with blue cheese, it was great. Joel now prepares our steaks with blue cheese and I have to say its great- we have wonderful memories of where we learned that little trick.

I was anxious to get back to the family and Jake and you will never believe the problems we had while sitting in the plane on the runway. We had to wait for hours for take off due to weather problems when we finally arrived at the New Jersey airport we were not allowed to take off, by this time I had lost my temper and yelled and said I had to get home to my son but nothing I did mattered. All of the flights were booked and we were stuck. No luggage, there was not a safe hotel room available and every bench in the airport someone was already sleeping on. Joel found something for a few hours and let’s just say we were both very nervous for the night. Everything eventually worked out and we made it home, as I knew it would be- Jake and the kids were great. Grandma and grandpa had done an excellent job and everyone was excited to hear what we learned. Somehow Joel and I were able to say the words that we did not want to hear or accept, and then holding Jake and looking into his deep blue eyes we snapped.

Our focus changed, and there was a total transformation for not just Jake but the entire family. Nobody knew how Jake’s body was able to function, yet he was! We made a radical decision and took matters into our own hands very slowly we started taking Jake off all of his medications to find his true base line and then very slowly only gave him what he needed to not be in pain. It was a very fine line that would constantly be changing as he would get use to the dose and we would have to fine tune it again. Our family motto became “live to live, not live to die” and we stuck to that! We cancelled our on call hospice, decided not to have any more tests and probes done. We consolidated all of our doctor appointments into one so we still continued to do all we could medically but Jake would remain home with the rest of the family and have all the experiences he could have and be involved in all of the family activities. He would not live in a bed he would live his life it was a different life but it was his life to live. Our focus as a family unit was to help him make it the best life we could.

Learning about the medical catalogues and on-line shopping options for alternative toys for me was really exciting, until I learned that all of the handicap toys and accessories were about 3 times more expensive than regular toys. At the conference if you lived back east you could order anything you wanted for your child for free and insurance would cover the cost. Well it was not that way in the West so we saved up and ordered what we could and then I started making some calls. One of my best arguments was when I called our congressman and asking him how many pairs of shoes he had in his closet, he was taken off guard and again I asked him how many pairs of shoes he has in his closet. As we talked I said you wouldn’t wear your nice work shoes and go hiking or to the beach would you? I explained to him that for my son his wheels were his shoes and how could you possibly expect him to only have one set of shoes (or wheels) every 5 years? Jake might not have another 5 years and I was not about to have him miss out on everything possible that life has to offer. Jake needed a really good wheel chair to be able and sit positioned properly with correct support to have complete comfort. Yet that does not mean that he didn’t need a set of wheels that he could take on dirt roads that he could feel the bumps and be strapped in for a fun ride. Well I was able to get enough funding and Jake had 5 wheel chairs so he was able to go anywhere and do anything. We did just that!

At home though Jake would still have complications we would keep our motto “live to live, not live to die” and Jake would always somehow find buried strength and pull through whatever obstacle might come his way. I did find a way to get all of the medical equipment necessary to help him at home and not have to go into the hospital. I became his full time personal nurse.

What happened next I could not see myself doing but knowing it was best for Jake found a way. I found the courage to let Jake go to preschool! With our motto if Jake needed to experience everything than he needed to have his own friends and teacher and have the experiences his siblings had. At first I just went with him every time and then sometimes I could leave him for an hour or two, but I eventually looked past my own desires and saw that Jake really liked school, he was happy and had a change from just me it was an important piece of his life and with all he had overcome he did not need an overprotective mother not allowing him to be all he could. So somehow I found strength for me to let him go and in the process I met some of the most angelic people on the face of the earth. Jake’s teachers were all so kind and loving and at first I did not understand why anyone would want to do this by choice, it is so hard to see little children in difficult circumstances and find out that many have had similar children of their own and many are just blessed with a true love from our Heavenly Father and are able to share this love with those who were our Heavenly Fathers most precious spirits.

This process of allowing Jake to go to preschool was hard for me. It was hard to allow other people in his life, to hold him just right or change his diaper and not make it too tight or what if they didn’t do something just the right way. When I started losing some of my control I was able to see the joy Jake had in being in his environment, making his own accomplishments, setting his own goals and then achieving them. It was never about having a couple of hours to myself or being free from Jake for a moment, I usually couldn’t get anything done without him now we had our system and way of doing things. But for Jake it was important to have his choices and freedoms to do what he wanted and liked-
This is a letter from one of his preschool teachers:


Jake, You are a very special person
And you should really know,
How I loved to be your teacher,
How fast the year did go.

Please come back to visit me
As through the grades you grow,
Try hard to learn all you can,
There is so much to know.

One thing I tried to teach you
To last your whole life through,
Is to know that you are special,
Just because you are you.

Good luck in Kindergarten!
I am very proud of you!


Thank you so much for letting us get to know you! You have taught us so much this year. We have loved your sunny disposition and sweet smile. We will always remember you!
I Love You-

You could not be in Jake’s presence for a period of time and not be changed for the better. Jake did amazing but it was time to make some memories and have some fun together. Remember all of those wheelchairs we talked about well he had his big comfy one for school and look at what he did with the other ones-

Jake enjoyed his 3rd birthday at a bounce house with all of his family and cousins they bounced the night away and he enjoyed the whipping cream on his cake!

As an entire extended family we rented a beach house in California and spent a week in San Diego we all had so much fun but my highlight was getting Jake a wheelchair and taking him on the waves, that’s right Jake rode the waves just like everyone else he played in the waves and giggled as he went up and down and was splashed by the waves. It is a memory that is burned into my heart that will never leave.

In another wheel chair that allowed him easy access to getting in and out and playing with his cousins. We took him and our family along with grandma and grandpa on our first ever Mexican Rivera Cruise! We spent a week on the Norwegian Star- since Jake all ready liked boats rides we thought this would be great, but we had no idea how great it would be. It was truly the best vacation we had even been on because I was able to have a small break myself. There is always a certain amount of work involved in anything worth while- but with Jake there was always something to be done, don’t get me wrong I wouldn’t have it any other way, and was so grateful for Jake but very meticulous on providing for his needs. Well on this cruise they took so much of the other work out of my life that I just had Jake’s needs and I was able to enjoy the fun things with my kids and FUN it was! We took Jake to every port and to every beach and did something fun at each place there was snorkeling, boogie boarding, horseback riding, parasailing, jet ski riding, playing in the waves, and lots of swimming. And that was just the beginning on the ship we had pools, ice cream, entertainment, cruising along in the ocean, and just pure fun. I didn’t even mention the food that was never ending as all day long we could eat and have treats that were gourmet treats- my kids still remember “washy, washy – happy, happy” as we were greeted at the restaurants IT WAS AMAZING!

We had another trip with Jake in his heavy duty jogging stroller that would last him until he was a big teenager but right now it could hold 3 of his siblings with him.

We took this chair as we toured back east and took the family to New York City were he toured time square, china town, the statue of liberty and Ellis Island the girls enjoyed the Broadway play Wicked, while the boys spent the night in the 3 story Toys R Us store that truly never ended. We toured Washington DC and showed our kids first hand all of the things they were learning about in school. Janessa was able to recite Abraham Lincoln's speech she had memorized while we were at his monument. They loved all of the sites and great history but it was a lot of walking Jake was so kind and we usually had at least 3 kids in his chair with him. They were exhausted as we made it to the Smithsonian but we made it and finished up with the White House. Thanks Jake if it were not for your new chair we would not have made it. Joel and I felt it was very important to show our kids the cost of freedom, many men and women have given their lives for us to enjoy the lifestyle we have today.

At the Arlington Cemetery as you see for miles nothing but white crosses for soldiers who gave their lives, well enough said. We felt the reverence at Gettysburg as we drove through the fields that so many had died in there was a little mist covering the ground it looked a little like a cloud and the earth was healing from the great battle that took place, but there were many scares that will always be a reminder to us. We enjoyed watching the lightning bugs and were thankful to be there at a peaceful time. The Highlight of our trip was being able to see the Hill Cumorah Pageant that was amazing! I hope all of my kids will remember the feelings they had that night as they watched the story of the Book of Mormon unfold at the exact spot where Moroni hid the gold plates waiting for the time that they were once again to be used, and the conclusion watching our Savior Jesus Christ ascended to heaven to be with his Father after all he had suffered for us. The reality that he would come back 1, 820 years later with his Father to the Sacred Grove that was right next to where we were at the Hill Cumorah. He would use the golden plates and once again restore His church on the earth to give us the full gospel through a boy that would our prophet Joseph Smith. I hope all of my children will always remember the feelings they had that night and the burning each one of us had in our hearts that it is true, and the only way to be happy and have joy is to follow His commandments. Walking with our children into the Sacred Grove as they were pushing their brother it was warm the trees seemed to touch heaven as the leaves would twinkle in the sunlight. We walked together to just absorb the amazing feeling that is there and then sat on a bench to talk and offer a prayer of gratitude to our Heavenly Father for this amazing time in our lives. We truly have been so blessed and as a mother I could not have been more grateful for my children and the family we were.

I don’t ever want my kids to forget the amazing experience we had together as we were talking on our bench and not quite ready to leave when a light rain started to fall. We could see the raindrops all around us and even some other people used umbrellas as they were walking on the trails as we were all sitting there not one drop his us, and as we looked up their was a ray of sunshine shinning down on us- Never forget the Love our Heavenly Father has for each one of us and how involved he is in each of our daily lives, how that day we had a little moment where the clouds were taken from us and we were given a ray of sunshine. Never forget- and always keep Him right beside you!

This song was made for Jake and I loved humming and whispering the words in his ear each night- I know Jake was living his plan that Heavenly Father had created for him daily-

I Will Follow God’s Plan

My life is a gift; my life has a plan. My life has a purpose; in heav’n it began.
My choice was to come to this lovely home on earth
And seek for God’s light to direct me from birth.
I will follow God’s plan for me,
Holding fast to his word and his love.
I will work, and I will pray;
I will always walk in his way.
Then I will be happy on earth
And in my home above.

HAPPY 4TH BIRTHDAY JAKE!!!
Spending the day at chuck e cheese with the family, Love you Jake!!!

WOW Jake- You look great!
Happy Halloween-

There was nothing better than a sunny day with the whole family skiing!!