By Small and Simple Things...: *Chapter 6*

Jake was doing well and we were so grateful for the moments we were having together. When it hit, against our best efforts Jake had RSV, he had been given the RSV shots and we were taking all of the right precautions I thought maybe it won’t be so bad- but I was wrong. Jake's little body was so frail it hurt so bad every time he would cough and try to expand his lungs for a breath of air. Jake was struggling so hard he was admitted to Primary Children’s Hospital once again. We said goodbye to the family and everyone took turns holding him before we left. I remember the doctor said we would know in 3-5 days if he could regain his strength he could make it through, but with his current weak condition again this could take his life. So we took pictures with Jake wondering if this was the last picture we would ever have in our pj’s getting ready to leave. Everyone gave hugs and kisses and we were off. Jake did not improve and it seemed every day he would get a little worse. But I stayed right by his side and suctioned and suctioned him night and day until his nose and throat would bleed. I would hold him upright and rock him all day and all night and then we got a break Jake's lungs were a little clearer his color was a little more normal and once again Jake was fighting his way back. It took him awhile but he made it, he even smiled and I knew it was my sign that things were going to be OK eventually. We made it home once again and were so thankful for Jake's determination and strength, he was such a great example to us all of how to be so patient in suffering. We wanted, we needed and most of all Jake deserved a break from it all.

As always there were the usual appointments and schedules to be kept. But we were getting better at scheduling and organizing chaos. Jake had made it through a rough winter and a not much better spring. He was being prepared for the biggest surgery that he had yet undertaken. As always because of Jake’s overall condition or unknown diagnosis we had to accept the possibility that by putting him under anesthesia his body would be taking on added difficulties and that he might not make it through. It is so difficult to take all of the opinions of each individual doctor, research for ourselves and somehow make the decision to try and help better Jake’s situation, but with the risk and recovery at such a high cost. It was almost impossible to have to make the decisions we had to, how we ached for our son. And how inadequate we felt we were to be making these life altering decision that no parents should have to make. Where other families were deciding between what color shirt to wear that day or to have chicken nuggets or peanut butter and jelly for lunch that day, we were faced with literally life and death questions. It would be emotionally, spiritually and physically draining. How many times can you pray over and over and over again? You want so badly just to know for sure-but one thing we got really good at was knowing that nothing was for sure every single 24 hour day when the sun would come up in the morning you had no idea what you would be hit with that day. As Joseph B. Wirthlin counseled us “come what may, and love it!” We tried to do the best in our adversity; we did all we could on our own and then took a leap of faith and went for it.

The decision was made for Jake to have a G-Tube permanently placed inside his stomach for feeding and the bigger part of the surgery would be to have a Nissen done. Which means you take his stomach wrap it around his esophagus and tie it off so when the stomach fills with food it will tighten and for the rest of his life he would never be able to have anything come back up. This is difficult because there are times in your life when you need to be able to throw up like with the flu hits and other situations, we would have to learn how to pump Jake's stomach and take care of his needs a little different. As harsh as it seems there were many positive's affect’s that Jake should receive due to the surgery. Jake would be able to finally get that tube out of his nose and throat which had caused so much irritation and damage on its own. In theory it should all work great and cause more comfort for Jake. Most kids who have feeding tubes in there nose only last a couple of months and then the G-Tube is always placed. It took us over a year to decide because of the permanency of the surgery and also us accepting that Jake could not get better and drink or swallow on his own. Was he really going to have to be fed by a tube for the rest of his life? Where we accepting that he was not going to get better and fully recover? We had held out for hope and lived on faith for so long it was difficult to make a permanent decision, if in our hearts still had faith Heavenly Father could fix this whole situation? Then we had put Jake through an awful surgery that could have been avoided? The months of planning that goes into this had been completed and everything was scheduled for an early morning surgery on June 10. So we needed to make good and keep up on our end of the deal. We started by going to Lake Powell at the end of May over memorial weekend on our very first trip with our own new boat! Jake loved it!! We camped out in tents and played in the sand went tubing and on as many boat rides as we could fit in before the sun went down- then we sat by the fire and enjoyed the peaceful nights. Everyone loved it and we knew right then we finally found the cure for our family. Lake Powell!! It was something the WHOLE family loved and enjoyed and could all do together. From that very moment we knew how we would recharge our batteries that life seemed to drain.

There was no time to waste because when we got home we had to leave for Jake’s first trip to Disneyland! We were so excited we rented a beach house for a week that overlooked the ocean. Jake was able to put his toes in the ocean and play in the sand for the first time.

He seemed to love it as much as grandpa Clayne did and would sit and be so content just watching the waves and hearing his siblings squeal with delight playing on the beach.

Jake's 1st Disneyland trip was great! We meet Goofy which was Janessa favorite character he came over and gave Jake the biggest kiss that engulfed his whole head, Janessa was right there and so excited to get a big hug herself.

Jake loved all the rides we would do together and could feel his tummy wiggle as we went on every roller coaster we could get him on! It was just what everyone needed nothing but fun and joy and happiness. You know you get more joy over seeing your kids light up and give a little smile, for Jake as always he took it one step further and we found ourselves tearing up with seeing his joy.

We stopped off at St. George for some pool time on the way home.
We took every moment we could and savored it because we only had one day to get home and get Jake ready for surgery the next morning.

I think I cried all the way to the hospital as I was holding on to Jake praying we were doing the right thing. Sorry for what I was about to put him through but hoping so badly for a better outcome for him on the other side. I knew I hadn’t even hit my most difficult part. After becoming so connected with Jake I never left his side I did not see how I would hand him to the doctors and watch them walk away with my son and that I was not allowed to go and just watch or be by him. We checked in and changed Jake's clothes and for the last time I pulled out the feeding tube from his nose that had kept him alive till now for the last time.

I was holding him and rocking him trying to explain what was going to happen and letting him know that I was so sorry I couldn’t go with him, but I would be right outside the door waiting for him and I would be there when he opened his eyes (whether the doctors liked it or not). As we were in the pre-op room the time had come and as I handed Jake over to the nurses I collapsed as I felt so empty without Jake in my arms. Joel and I embraced as we watched Jake disappear around the corner and had to wait for the next 3 hours that felt like eternity to us. After 3 hours we still were not with Jake and I couldn’t take it any longer. Your mind does awful things as you sit there and wait each tick of the clock you think something has gone wrong. With Joel trying to calm me down I had to find Jake on my own I had to see him good or bad I needed to know what had happened, I promised I would be the first thing he would see when he opened his eyes. I went through the no entry doors for the surgery room and found Jake being wheeled to recovery they asked me to go and wait and I said not on your life. The surgery was over and had gone very well but they were still trying to bring Jake off of anesthesia and still needed to clean up his bloody body they did not want me to see him in that condition. But I was very insistent and explained I had to stay with Jake, we came to an understanding. I was there with Jake again and whispered in his ear to come back he made it!

The surgery was a success for Jake and we spent the next 5 days in ICU recovering, but when we finally got him home we had a new beginning. And even more amazing was the peaceful feeling we received letting us know that we had made the right decision for Jake.

We did just that after Jake’s surgery we started searching for things that could bring him joy and happiness to his life. We came upon an early intervention program from Jordan Valley School for the handicap. We signed up for a mom and me music class that Tyler got to come to sometimes and help us. They had fun instruments and songs and books and cd’s that Jake listened to every night. We started having physical therapy and I went to classes and learned with Jake and then we scheduled things at home to have therapist come to our home to keep Jake healthy and happy. We started going to PIP vision classes every week and continue with our physical therapy, vision therapy, and music and movement classes. We found new equipment for Jake and had braces made for his legs to keep them straight then put his body in a machine that stands up so Jake could be upright and this would help with his health and muscle tone as well.

We had wonderful people who came to know and love Jake and we looked forward to continue our learning so we could give Jake all he needed for a successful life. And then every day we would do all of the therapies ourselves we had a basket of learning toys and every day we would have Jake wear his braces and stand as much as possible.

We kept trying to activate his swallowing by practicing taste sensation and trying to swallow every day. After 3 years of trying daily Jake was able to eat and swallow a small jar of baby food! It didn’t last forever and again he became too weak and could not do it anymore- but it was worth it for Jake and I to accomplish such a huge goal and climb that mountain that he was never expected to be able to!

We kept trying to help him see and learned new techniques and got him his first pair of glasses. He loved to play with all of his vibrators and bright color toys with songs and music. Having a big brother only 18 months older sometimes it was tricky and because Jake needed so much help Tyler was great at just blending in and doing what needed to be done for Jake. He spent a lot of his time with his cousin Josh who is only 3 weeks younger. How lucky we were to have an aunt who loved Tyler and would raise him as one of her own. We did what we had to do to survive and tried hard to make everything work out. On the good nights it was normal to see Jake in his stander right in the circle of the family playing Yahtzee as everyone would have Jake roll their dice for them, and as a bigger treat Jake got to suck on the caramel popcorn spoon. He would stick out his tongue and get a good taste.

I don’t care what anybody says Jake was there, inside his body and he knew everything and was a part of everything, and we were so thankful for him being a part of our family.

We would get in as many Lake Powell trips as we could and go boating on the weekends whenever we could. Jake loved to have trips to the zoo and loved the train we would do what we could to keep things fun. And what we did next might have just been a little crazy but we decided Jake needed a little puppy of his own to sit by him when he couldn’t move. It was really needed by the whole family more than we ever knew. So I began to research and found a little puppy that I think was sent just for us. When the day arrived for us to go get the puppy we sent the kids on a scavenger hunt around the house and as they found all of the items needed for a new puppy they realized what was happening and squeals of delight could be heard for miles. The day had arrived and preparations were made to go to Idaho to pick up our new puppy, Joel thought I had lost my mind. It was great we had a stop to visit our great Grandparents and came home with our little Maltese puppy named Brewster. When the owner heard of our story she would hold our puppy and train him just to sit and be held for hours. And that is just what he did from that day on if Jake was laying on the couch it was very normal to see Brewster snuggled up next to him or licking his checks and hands. Jake loved it!! Brewster did a great job of healing some of our hearts and all of the kids loved him.

At this time in life Jake had made it through so much, so many doctors still not sure what was wrong, still not sure on why he was still here holding on. But we didn’t care we had our family and although it was different than what we had planned we were living it to the fullest each day. The summer had come and gone the fall and winter was upon us once again and time to take extra measures to keep everyone healthy and strong. The kids were involved in their activities and trying to have as normal a life as possible. We would go to dance concerts, parent teacher conferences, help with homework and try to give the time and attention to all. Tyler had a broken leg, Monique would have asthma attacks and need extra help we learned just because you think you have one thing that is a pretty big trial it does not exclude you from other trials that still come your way. We would work as a family through every obstacle. A positive attitude help’s a lot at a time like this and encouragement that whatever may come you can do it, you can handle it just keep moving forward. We had to have the Lords help every day in our lives as we started with prayer and ended with a prayer of gratitude for just making it through the day.

The Holidays were upon us again and as always we were so thankful Jake was with us it gives you a different perspective on life. We have a very loving extended family and so many of them were already helping us out so much, we were given so much service but it just seemed to never end. Unknowing to us a sweet family we will call the Wallace’s did quite the production of the 12 days of Christmas an amazing sister we will call Wendy doesn’t know how to do anything small. My kids waited and waited and squealed with delight each night when the door bell rang and they were sure they would catch them this time, but every time they got away and another amazing gift was left to open and enjoy each night. How thankful I am to have been given such an amazing family and sisters that were my best friends. Every time life got to tricky or too hard and I just didn’t want to do it anymore they would always step in and fill in my gaps. I know the Lord answered my prayers many times through my sisters. On one of the 12 days of Christmas a pack of stuffed calling birds were left on the door step the bird Jake was given was the Chickadee, it sings “Jacker's”. The real Chickadee found us and continually comes singing his “Jacker's” song to remind us of Jake and the love of others. Jake still loved our newest tradition of bundling up to keep warm and on Christmas Eve we would head out for Temple Square. Seeing the Christmas Lights and hearing the sounds it was another way Jake could be involved in the celebration, that he was apart of it, it was not just happening around him. We tried to bring our extended family in on this one as everyone thought we were crazy. But there is a special feeling at Temple Square on Christmas Eve that you can’t get anywhere else. It didn’t matter if it was snowing or freezing outside and you would think Jake should not go out in the weather or it would be too hard to get him there. No matter what we did it!

And Jake loved it and taught us again another valuable lesson – if he could do it anyone could do it, and without complaining, how simple it really is to feel the love of the Savior and feel the spirit of Christmas. Every Christmas Eve we devote to the Savior and contemplate what he did and sacrifice for us and remember the true “reason for the season”. We had another great Thanksgiving and the Merriest of Christmases. Thanks Jake for teaching us once again.

We kept plugging along again and with the sicknesses that follow you from winter to spring we just kept going. Jake had to be on oxygen during this time quite a bit and we just learned how to carry more and ordered his first real wheel chair made just for him with all of the bells and whistles that would keep him comfortable and positioned just right since he was unable to move for himself. We added an oxygen tank holder so Jake was ready and equipped for more adventures.

We kept trying new therapies some Jake liked some he did not. Jake did not always love the special time with Uncle Blaine also known as Dr. Pain. Blaine was so diligent in taking so much timeout of his busy schedule and to be away from his family to come over and stretch Jake out and make sure his muscles and bones were all where they were suppose to be. He gave me a break and would spend so much time stretching every finger and toe and I know it helped to keep Jake healthy and strong. We are so thankful for Uncle Blaine and his family for there time and service to our family. Jake did love having horse back riding therapy and being able to ride the horse and pet him. It did not last long because Jake was so floppy but he did enjoy trying new things.

We did find out what Jake's favorite therapy was SWIMMING, we were lucky to find a therapist at TOSH that would help with Jake and every week we would take him in and he would have therapy in the water and we learned that Jake could move in the water. Sometimes he would stretch and point his toes and push himself straight up and down, other times he would flex his arms and sometimes nothing happened, but you could see his littler legs and arms make waves in the water. Either way it was great because Jake would laugh and smile which is what is most important.

So after making it through the spring Jake's 2nd Birthday was upon us there was no question what Jake wanted to do for his birthday this year. So with everyone ready we all went SWIMMING to a fabulous indoor warm pool that Jake loved! It has something for everyone deep water with diving boards for the brave ones and a kiddy pool with a jungle gym in the middle that was warm for the little ones. Jake loved it all!!

After wards we came home to do his other favorite thing MUSIC and MOVEMENT. We all gathered round and made our own instruments, we then went downstairs to blast the music with our own homemade band, and it was great! You could hear the roof rise off the house for a mile away and we sang and danced until we were sweating and couldn’t move another step.

Then with help Jake blew out his 2 candles on his very own guitar cake. Happy Birthday Jake, we loved your special day and all of the special memories you give us.