Joel was more determined than ever before to find a way to support our son, and although we had always been told how short Jake’s life expectancy would be every time Jake defied all the odds and deep inside we truly wondered what if … What if Jake had other plans, we needed to be prepared. We attended seminars on how to prepare a sound future for handicap children, medical expenses could destroy an entire family’s financial well being, and the thought would arise what if something happened to Joel or myself how could we manage. There were programs in place for families to have support in these situations and as we asked many questions of others who had paved the way for us and had learned along the way what ideas work best and what maybe not so much we tried to start to develop a long term plan not just for Jake but for the whole family. We felt very strongly that we needed to try and be prepared; a shortened life expectancy could still be 20 years? We met several families who had children that were not suppose to make it as infants and I met several kids in there 20’s, you never know what life has in store (as we learned time and time again) so we decided to go with a plan that Jake would be with us long term. I also had a strong conviction that they would be great years! Jake would not live in a bed, he would not have a nurse to come in and take care of him. As long as I could move I would take care of my son and he would live every day just like everyone else!
Joel had a big decision to make he was currently employed at Flying J and enjoyed his work and the people he worked with. But he had been traveling for 7 years and he watched the toll it was taking on my body. As I would bend over and lift all of Jake’s 50 pounds in the tub and carry him up and down the stairs, by the end of the day (every day) I could not feel my middle back. Sometimes I would have ribs pop out of place and I was so lucky to have a great brother-in-law Dr. Pain as Jake referred to him, we really know him as loving Blaine, who would put me back together and off we would go for another day. It always seemed catastrophes would happen when Joel was out of town, I would start to worry in the middle of the night as I was alone with all of the kids “what now”. I am so grateful when Joel could be home to keep my toes warm at night and have the extra security that everything is ok, whatever might come. Joel realized we would need to build a house for Jake a rambler with no stairs that would be better for us in taking care of him. Also for our growing family, since Jake was born we spent most of our time at home and wanted to build a sanctuary away from the world as a comfort zone for all of us. Joel also realized he could not continue to travel; he was needed at home for our other children as much as for Jake. And he also felt great pressure to find a new career that could support Jake and our family financially yet have the time to be there for them as a father. As much as we watched Jake fight sometimes just for a breath of air, we wanted to fight for him by providing every monetary item that he could use and enjoy.
In our searching for a home to build Joel was directed to a piece of land that he thought could accomplish all of his goals. He wanted to find a way to purchase the 20 acres of ground in Draper just one short mile from where we lived, our kids lives would not be disrupted in any way they could keep their friends and go to their same schools. Joel wanted to find a way to purchase the land, develop the land and build houses on the lots. This was a huge risk for Joel as he had no knowledge or background in any of these areas, but he had been blessed with an entrepreneur spirit and was more determined than ever to find a way to make this work. Joel went to work at nights figuring out how to accomplish his goal, while he still worked for Flying J during the day, he was able to not have to travel as much but had to drive to an office in Ogden every day. He was actually busier than ever working 2 jobs now, but my toes did enjoy being kept warm at night. Joel’s strength and determination came from Jake’s example as he watched his son every day fight to breath, swallow, have seizures and endure pain that a grown man would struggle to endure, yet Jake never complained and never murmured he was content just to be with us and would give us encouragement with his smile.
Joel had been working for months and had done all he could to make the project successful. He had a deadline at the bank where he risked all we had and mortgaged all we had paid off and took the last little bit of savings to purchase the land. At the same hour I had to be at a different meeting, one that Joel is usually with me but this time we had to divide and conquer- my meeting was to get Jake’s results back on some more test’s his doctors had been working on as his little body was still struggling for survival. Joel finished up first and called me on his cell so excited “We got it!” He was able to purchase the property and start a new exciting adventure of development and building homes. The land was now named Oak Hollow Estates being developed by LeRoy Development and the custom homes being built by Jake’s Custom Homes. None of this would have been possible without Jake it was all for him and by him that we could have the strength the risk everything for a chance to make everything! I was proud of Joel and tried to enjoy in his excitement, but as I was still in the doctors office my voice trembled as I swallowed my tears and said Jake’s results are in and the doctor just told me Jake once again had maybe months left but that Jake was going to die.
How could this be, we felt so strong that Jake was going to remain with us for some time we had seen so many other families with children who had survived way into their 20’s- why was Jake so terminally ill, and nobody could figure out what it was? Joel had known through this whole process he was being guided and directed, he felt the spirit give him direction and thoughts came to him that helped him solve problems that would arise. We know we have heard it before, but somehow Joel was not going to let this information get him down or stop him from the path we were on. Nobody knows for sure we are going to move forward! I know all that we are doing is for Jake and we are being guided, helped and blessed on our journey- only our Heavenly Father knows the master plan, Joel felt that he would help us through whatever comes. At this time Joel was laid off from Flying J and put all his efforts into developing Oak Hollow Estates and started preparing for Jake’s Custom Homes first build job our very own dream home!! I cannot even begin to describe the obstacles that tried to stop us along our way- but together Joel and I were a team and worked together every day at developing, building taking care of Jake and raising Janessa, Monique and Tyler. We have amazing children that were doing great in school and excelling in extracurricular activities. Janessa and Monique loved to dance and play with friends. Tyler and Jake were with me a lot but Tyler went to pre-school and played soccer and loved spending time with his best friend (and cousin) Josh. It was almost an overwhelming uncontrollable busy time but we did it. We got up each day and worked together to get everything done. It was at this time that Joel and I were having nagging feelings that our family was not complete but at the same time knowing it was impossible to have another child, right now it took all the strength I had just to take care of Jake and try to help our other children. I was scared to even think of the possibility of adding to our family with the responsibility I felt for Jake. Sometimes late at night as my mind was filled with thoughts I wondered if every doctor was right and Jake would die what would happen to Tyler? Was it to big of a gap for another child anyway, were we too late? Where were these thoughts even coming from Joel and I felt our family was complete and really wanted to have give Jake all he needed which was like taking care of several children. My girls already had so many responsibilities they had to do and so many things I would have to miss out on- nobody was upset it was just the way it was, but to purposely add to the mass chaos? Not to mention all of the doctors who would call me irresponsible, they still were not sure if this could somehow be genetic and to purposely bring another child in the world that would have to live like Jake – well we were told more than once that we should never have any more children. Yet somehow the feelings would not go away, and then by a total surprise I was pregnant. We had not planned on this pregnancy and for the first time in my whole life I cried when I found out and felt so much pressure how could I possibly do this? Jake weighs 50 pounds I carry him around all day long and because of Jake’s floppy tone he could not help me hold himself and well it was like flinging a sack of flour over my shoulder and I loved every minute of it! I was told I could not carry him while I was pregnant and I simply said that is not an option, if it is meant to be I know this baby will have to be stronger and hold on as my body has very strenuous days. Somehow very quickly I got used to the idea of a new baby in our family and found ways to make everything work- like Costco has big carts and I soon learned that every where I went I could push a wheelchair and pull a cart. It could totally work. I just had to be very organized and it usually took me twice as long to do anything. With my sister’s help and building up my confidence I had everything worked out and was ready and excited for this new life to join our family! That is when it happened I had my first miscarriage as I was in the emergency room and nobody could find a heartbeat I knew it was over. Oh the guilt I felt I was so sorry for ever allowing a negative thought to enter my mind, that it would be too hard or that I couldn’t do it- was I being punished for not wanting a gift from above? I was so sorry and there was nothing I could about it I laid on the couch for 3 days in pain, but none of the pain was as bad as to the guilt I felt for my actions. Joel and I knew we had allowed fear into our lives and it controlled our thoughts and actions. If Jake had taught us anything it was we were not going to live in fear- we had the love to bring one more spirit of our Heavenly Father into our home and give them a place of refuge from the world. Joel came to me only a short time after the miscarriage and said he feels we are to have a child now and not any child but that we are to have a son. This time we made a decision to listen and to listen “right now”. I was still scared to be pregnant I was scared to deliver a baby and to find a doctor that would listen to me because of what happened during Jake’s delivery and trust me when it came time to deliver our baby, we went forth in faith- a lot of faith.
Life went so fast I could hardly keep up myself. Joel did a great job the land was developed it was subdivided into 20 lots we had sold some lots to keep cash flow moving. We worked with an architect to design our families dream home that we could stay there forever with Jake no matter what may come. We took Jake every day in his wheelchair to make sure every hallway was wide enough for him to move freely, his room was built attached to ours with 2 huge windows that he could look out and feel the sunshine everyday. His shower had 6 heads that he could sit in the middle and be massaged on every body part and the steam would help to relax him. We walked around every corner to make sure he would fit in his wheelchair in the kitchen and be apart of everything the family was involved in. We even built an apartment downstairs so he could have a place of his own when he was older; there was another room for him and a possible a helper if that is what he wanted. We added a sidewalk so he could access to the yard and downstairs. We had future plans for an elevator if we needed and for a swimming pool because of the great therapy that it is for Jake and the freedom it gives him to be able and move. Every detail we could think of was met and we were truly blessed beyond words to be able to live in our dream home that was built for and perfectly designed for Jake and because Jake was in our lives we all were going to enjoy this wonderful home together that had something for everyone.
We did find another angel on earth that believed me and listened to my concerns about being pregnant and still having to care for Jake. He closely monitored me and my baby towards the end of my pregnancy when I started having some of the same problems I had before, we started some more testing and monitoring and at 37 weeks we decided to do an amniotic test to see if the baby was developed, lungs matured and ready to be delivered. I was nervous for the test and as I get very large when I am pregnant it seems my skin cannot stretch anymore so to put a large needle straight into my stomach did give me some anxiety , but I trusted my doctor and because of what I had learned with Jake did not want to take any chances. The test was done and there was a rush put on it for the results. Within 2 hours my doctor called and said the test was completed and our baby was totally developed and ready to be born right away and we decided to have a c-section that very day. So off we went and on November 3, 2006 Jake, Tyler, Monique and Janessa were given a new baby brother Brock Jax LeRoy and we knew right away that he was meant to be a ray of sunshine for our family. We were so thankful we truly listened right away and did not live in fear but had the faith to follow through- that’s what his middle name means Jax is after Jacque to always remember to have the faith to do what you know is right.
Well we had another wonderful holiday season with all of the same traditions and were so excited because our house was just about done. We were scheduled to move in January so we were very busy packing, but with Jake and a new baby it went pretty slow. Life was good for a moment until we were hit hard once again. Tyler was not feeling well and we couldn’t figure out what was wrong he was losing weight, his skin was very cracked and bleeding and he was urinating a ton. One day while Joel and I were working on the house we left him with Monique for an hour and told her to count how many times he went to the bathroom she called me after an hour and said it had been about 8-9 times. Surely this is not normal I called my sister and told her his symptoms’ and as she googled for me we both surely thought this cannot be right Diabetes is a sign for all of his symptoms’. I called my doctor and just said I needed to have Tyler checked for an UTI infection or something he was not feeling well and with the weekend approaching I wanted to make sure he was ok. So we just ran in to give a urine sample, but I will never forget the look on the doctors face as he came in with the results and said how fast can I get Tyler to Primary’s Children’s Hospital- I knew immediately I could be there in 42 minutes and that would give me time to grab some things from home. But why? The test led everyone to believe that Tyler had Type I Diabetes but the hospital needed to do further test to confirm the diagnosis. The office staff was shocked as we had become so close from all of the times I am there with Jake. Everyone was in shock when they heard the news- how much trauma can this family take? The arrangements were made and Joel, Tyler, Jake a new baby Brock and I all headed up to the hospital for 5 days as Tyler was diagnosis with Type 1 diabetes an autumnal disease that his own immune system overreacted and attacked his own pancreas. Destroying the cells that create insulin in our bodies which would require Tyler to have to inject by needle insulin for the rest of his life. When you are barely 6 years old and afraid of needles this is a horrific process and anyone in a white coat comes in and pokes you countless times a day, and then expects you to just understand accept your fate and do it yourself before you are allowed to leave the hospital. What a harsh reality Tyler was just dealt with, nobody can understand what it is like even me until you live with it yourself. What devastation can come so quickly into our lives Joel took this one really hard as we learned how our lives would forever be changed.
We learned why it was so important to listen immediately if we would have waited would we have the required faith to have had another child? With Jake and now Tyler’s own chronic diseases our lives were tossed upside down? We all just wanted to get home but we were between both homes and living in such a mess it was overwhelming to me. Once again my sweet family and ward literally just came in and moved us to our new home where we started to rebuild and come to terms with our situation. We all were so grateful for this wonderful gift we had been given- the house was amazing it was truly 10,000 square feet of perfection and we were so grateful and blessed to be able and have such an amazing sanctuary away from the world that seems to keep hitting us with hard blows.
We found a way to have some more time to spend on the boat with all of the medical conditions and a new born baby most people thought we were crazy to go camping and with no electricity. But we found a way to make it work and tried to enjoy life together. We were more determined then ever to bring joy and happiness to our family and enjoy the small moments where we would find some peace. One thing is for sure when you keep hitting rock bottom there is only one way to go up.
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