I learned early on whenever life takes you to the end of your limits it does not last forever, almost like your allowed to come up for a breath of air. We were very blessed to have a season of peace, joy and happiness.
We were all moved into our new home and loving it! We still had all of the same issues but we found a productive way of dealing with things. Tyler’s life (and the rest of the families) would forever be changed, I am not sure if you ever adjust to all of it, but we were managing. We kept in construction mode as we still worked to get the basement and yard finished. Jake’s 5th birthday was just around the corner and I wanted a huge celebration!! We worked hard and had everything finished just in time. It was great! Jake invited all of the construction workers who had worked so hard on our home and since Jake was the boss (and so easy to get along with) everyone wanted to attend and of course we had all our family. The day couldn’t have gone any better Jake was doing great he was all smiles with a party that was all about him. To start we had his favorite “silly songs” cd blasting through the whole house (and outside) on our great new sound system. The guests arrived and we started with an amazing barbeque from one of Jake's favorite places in the new house our huge deck, it was large enough to hold everyone with a view of the entire valley, but the reason it was one of Jake’s favorites places was for his new red swing that he got for his birthday! His swing was big enough for Joel to have a ride but mostly you found Jake, Tyler and Brock all having a ride together, when Janessa and Monique got a hold of Jake we had to buckle him up because it was like he was on a ride from Disneyland and then it would happen you would hear the sweetest sound in the world “Jake's laugh” he would swing and swing until his eyes watered and he lost his breath from laughing so hard, and as the protective one I would say slow down be careful, and they just waited till I was gone usually in the kitchen watching from the window and they would go just as hard and fast as Jake could take it, Jake LOVED his new red swing!! It should be mandatory for every child to have their own swing especially special spirits like Jake who truly felt joy and exhilaration that you couldn’t receive many other places. Whenever Jake was crying or there was a spare moment we would get Jake into his swing, it was a true gift not just for him but for us. The party must go on so after dinner we all went to the newly finished basement where there was a massive game of musical shapes Jake style in his wheelchair or feet while the music was blasting you had to run and run and end up on a shape, we did this until everyone was sweating. Then it was off to the indoor basketball court where a great game of volleyball was taking place. Jake loved being involved with everyone and when he entered the room it was even better because everyone played the game with giant beach balls. The day would not have been complete without a new trampoline and his 4-wheeling stroller! With all of the new additions Jake truly had a great birthday and he went into overdrive with all of his vestibular senses activated, from this day forth Jake had so many activities that he loved to do and so many places and ways for him to receive enjoyment during his day. Our goal was met, another incredible birthday for Jake and as always a bigger gift from Jake- he gave back to us joy and happiness in being able to purposely make him smile and laugh! Words cannot describe the pure joy we all felt that day!
Jake loving his swing- room for everyone! Getting ready for another fun bus ride to school and on the really cold days a personalized coat that kept him totally warm and dry- thanks Grandma and Grandpa Poulsen!!
Life just kept getting better and better I would wake up every morning to the sound of birds in our own little private canyon, Jake would wake up look out his window and just wait for me to get him ready for the day. He loved to start (and end) with a steam in his own personalized shower, no more back breaking work we just laid him on his shower trolley and pushed him to the shower. First we would get his toes wet and he would always pull his legs in for just a second until he felt the warm water and would relax and let out an enjoyable sigh as his whole body was being massaged by warm water. Mornings were always quite busy as we would get everyone else up and ready and off to school and guess what? Yes, even Jake was off to his own little kindergarten class. This was soooo hard for me but somehow Jake could always convince me to do the right thing and know what he really wanted. Although I started slow and most of the times would drive him to school, and not wanting to leave, Brock and I would hang out there with him. Eventually again I learned to back off and lose some of my control and let other qualified people hold Jake and interact with him more. The more I backed up and watched my eyes were open to an amazing world that I could not see before, Jake had taught me to see all of the good and kindness around me in his handicap school Jordan Valley that I myself would have never allowed myself to do. All of the kind instructors and aids who have had children of their own or been involved with kids with disabilities and craved that feeling that you only receive by serving one of these special spirits. I was so impressed every day by Mrs. Dolly (Jake’s teacher) as they would all meet for circle time and go over the calendar, days of the week and learn to talk and say each others name, even Jake was given a little switch that when he pushed (or had help pushing) would say his name. How everything they said or did with the other kids they would involve Jake, he would have something to feel since he could not technically see it. He went to school just like his brother and sisters and they did the same things in Jake’s school only better because it was so individualized and carefully planned out. Yes, Jake loved his school I could tell and I could not take it from him. By the end of Jake’s kindergarten year he won and I even let him ride the bus to school. His cute little bus driver Joanne had never met a more protective mother but was so tender and patient with me as I would call and be standing outside if Jake were 2 minutes late. Every day she would tell me Jake loves the ride he laughs all the way down the hill as we bounce and roll. I know Jake was truly living his life, it was a different life but it was his- and he deserved to live it the best way possible.
Summer school is available to all of Jake’s classmates and most of the other kids enroll I simply said we are too busy playing all summer no time for school, and play we did! We were blessed enough to be able and upgrade into a boat that could fit the needs of our growing family – we spent every chance we could on our new boat and named it JJ’s Crew. Our favorite spot as always was Lake Powell and with our new boat we loved it even more it had a bathroom way more storage we had cushions designed so we could all sleep inside and a big tent was built to keep us warm and dry on stormy nights, oh and the kids favorite a tower with speakers and worked great for wakeboarding off of. I knew Joel loved me to new levels when he paid extra and had a hot shower installed now the whole family (especially me and Jake) enjoyed all of the hot water we wanted at the end of our fun days. There was nothing better than filling our summer nights sleeping under the stars and making memories to last a lifetime. It was so fun all of my sisters, brother and parents all purchased boats and together we find a canyon for all 6 families to stay in and go to Lake Powell as much as possible, we are truly a very very blessed family!!
Well fall comes and back to school we must go everything was on schedule as we know the drill but my biggest challenge lay ahead as it was Jake’s first grade and he would go to school all day. This took me to new depths as it went against everything I knew and well Jake was basically “my life”. I had tug-of-wars within myself feeling guilty for letting him go and not knowing what I should do without him to remembering his teaching from the last year and know that he loved it and wanted to go. Eventually I did break down and on healthy days Jake rode his bus to school both ways, Joanne truly loved and cared for Jake and enjoyed each day she was able to spend with him. Jake always dressed so nice with his hair gelled up (Jake never complained about what to wear or how his hair was) he is the only one of my kids who gets that award, but like everyone else he didn’t like to brush his teeth. Jake would get compliments each day for matching his shoes to his outfits; he even had helpers at the school that would look for him to see what fun shoes he would wear that day. This year Jake was moved to a class that would be considered the most severe of all the handicap children and as I interviewed all of the teachers I came to meet 3 angels (plus assistants) on this planet Sue, Mariana and Carrie. As I watched them tube feed and suction and lift and carry little broken bodies filled with enormous spirits and care for them as if they were their own little loved ones it caused my heart to swell. This is a part of the world that I had never before experienced and without Jake would not have even known about or been part of. But somehow it became a huge extended family as we would have chances to meet other families and hear of their stories and their life altering experiences how we all ended up having children in this room when our hopes and dreams for them would have been somewhere else. It was like becoming part of a club that you didn’t really want to be apart of- but now that you were apart of this elite club that had life altering entrance dues, you never wanted out of. Because the world that you are now apart of is so much sweeter and deeper than anything you have ever experienced. And occasionally there were great benefits, like with all of my kids I enjoy helping out in their classrooms in school so every Friday was no exception for Jake, but when helping out in Jake’s school we got to go swimming. That’s right every Friday I would put on my suit and drive to school where I would enjoy one-on-one time with Jake and I would put my skills to the test and help him stretch and exercise with his classmates. He loved it, and so did I! Jake also loved going to PE, music class and having the projector on the wall where he could experience by sound, touch, lights and vibration his lessons at school. Jake’s all time favorite experience at school was the somotron room- it was a magical encompassing room filled with soft music, lighting and vibrating bags that he was able to totally relax and all of his senses were engaged. Jake loved it so much I worked hard to try and mimic a little room of his own at our home. It took us a long time to get as many items as possible but Jake loved it! Jake’s favorite part was his somotron bean bag that I hooked up to a stereo system and turned it on- Jake would feel the music beats through the bag. His brothers and sisters would love to sit next to him and feel the music. It is almost impossible to explain if you have not seen it for yourself, but trust me when I tell you that there are true angels walking the halls and they are in the classrooms and little miracles happen every day in Jake’s school. This is where I gained most of my knowledge and ideas that I could do more to help Jake at home. I learned about lights, switches and how to reach senses I did not know possible before.
At school Jake was introduced to a new experimental project called Eagle Eyes. This was a little box that attached probes to Jake’s head and then by plugging it into a special computer your eyes became the mouse and Jake was able to play his own video games on the computer- that’s right you heard what I said! Jake was able to shoot alien ships and color with stars and other shapes on the computer screen. It looked like the very first Atari game that ever came out but none the less it was moving mountains to me. His first day he was able to shoot 6 of the 10 ships, I was sure if I practiced with him every day my hope was that Jake could receive another miracle and learn to train his brain to communicate with his own computer some day. My goal was to eventually have a yes or no box on his computer and hopefully with practice and determination someday Jake would be able to answer for himself. Could you imagine? I was so excited for the possibilities it could offer. I was so hopeful that we purchased Jake’s own Eagle Eyes machine and practiced with him at home and not just at school. The kids thought it was great and loved to watch Jake play on his own computer.
Jake and I were asked to be interviewed on the new technology of Eagle Eyes, we said sure we were so excited and I am a firm believer that our special kids should have every opportunity if not more given to them. So if there is anything Jake and I could do to help we were all in. We met at the school with Kimberly Perkins who asked us questions about Eagle Eyes and the wonderful benefits Jake was receiving. She was so touched by Jake’s sweet life story and the amazing, contagious person he was to be around that we were asked to do an extended interview at our home with his whole family and how our lives truly revolve around Jake and how we all come together to rally and make sure Jake has all he needs. The program is called Profiles in Caring with Doug Jardine and Kimberly Perkins. They came to the house and took footage of Jake on his computer working his Eagle Eyes computer and video taped the kids playing with him Janessa and Monique loving him and helping with his sensory toys Tyler doing huge swoops and turns and making Jake laugh Brock would give Jake the biggest wettest baby kisses and Jake just sat there and smiled with all the love everyone continually gave him. You can see the interview with other people who believe in Eagle Eyes here: (http://www.goodtube.org/videos/188/profiles-in-caring-epi-5-8-eagle-eyes).
Well we were all so happy I was almost scared, could life really be this great? We had so many ups and downs I would be nervous when things were going so great that something was waiting for us around the corner. Well as always what goes up must come down it was a particularly hard winter for Jake where his body seemed to weaken and he would catch every simple sniffle and he would get soooo sick. Poor Jake was so sick that he had to stay home for over 3 months and needed 24 hour care. I didn’t mind I loved to spend the time with him (a little selfish on my part) but I know Jake would have rather been at school and working on his computer and playing with his family, but he just tried every day to breath. Jake was back to crying like when he was an infant, it seemed like it did not matter what I did I could not comfort Jake. I quickly called my team of professionals and again there were no good answers, everyone was so sympathetic and shocked he was almost 7 years old and still here. I did not like any of their answers as usual, and we went back to basics treating his symptoms. He had another overnight sleep study at the hospital so we could try and figure out his breathing and brain sensitivity. We ended up trying a C-Pap machine where Jake wore a mask at night hooked to a machine that forced air into his lungs. I know Jake loved the air and ease of breathing but he hated wearing the uncomfortable mask hooked to machine- so each night was a decision do you want to breathe or have sleep apnea and quit breathing several times during the night? What parent would ever want to make that decision! It wasn’t just his breathing Jake's whole body seemed to be deteriorating he could no longer accept food in his stomach he would hack, wrench and gag that brought his whole body to shake as he would try to throw up but because of his Nissan he could not and would just gag and gag until I pumped his stomach empty. For this we decided to place his G-Tube into his intestines and order yet another machine that would drip Jake’s food 24 hours a day, his body seemed to tolerate this a little better. I started a new diet with Jake called the Ketogenic Diet I did much research for over a year and found that this treatment could help with the seizures Jake was tormented with and if it worked you could reduce the medications so he could be more alert. My problem was that his doctors were not very excited about trying this method with Jake due to his overall condition and the dangers it proposed. After one of Jake’s day where he had 10 grand mal seizures I called the doctor and as politely as I could demand that Jake starts the diet immediately. After much negotiating Jake had to be hospitalized to start the process because you have to put your body into a state of ketosis (which is the danger Tyler has with diabetes- ironic) and then he has to only consume pure fat, the fat will coat the nerves in his brain which theoretically will help to have less to no seizures. I had to call a dietician daily to weekly as every day I had to measure, weigh and calculate his food add all of the nutrients he needed. I was happy to do it, because I know it was working Jake was having less seizures, I watched him closely and was meticulous at organizing his nutrition, I was so glad I took the leap of faith and it worked out to benefit Jake, I really learned to try and trust my instincts. Well what goes in must come out, Jake had an incredible difficult time just going to the bathroom – Joel and I would literally have to help him each day get his waste out. I could not believe that with everything else Jake had to deal with he had to endure so much pain because his body could not fart or relieve himself. I was determined to find another option I could not watch my son suffer because he could not go to the bathroom. It was pretty messy for Joel and me but it worked for Jake. Also, Jake’s little body was deteriorating as he now had scoliosis due to his low muscle tone, he did not have the muscles to hold his bones into place. His back was curved which caused his whole abdomen to compress and everything to get smashed inside, which is what was causing most of his GI problems. The only thing we could do to fix the problem was to have VEPTR’s (rods) placed on Jake's rib cage and by little mini surgery’s they would expand the rods helping Jake to straighten out. It was so invasive and the risk of infections were high every time they have to expand the rods, but Jake would be able to breathe, swallow, his stomach and GI tract would be able to work again (hopefully). We knew it was something that had to be done but had to be positive of the right timing. Jake also needed to have another surgery for his GI tract. He had hacked and gagged so violently for so many years he had pulled his Nissan loose. And on top of that it was not uncommon for Jake’s hips, shoulders and other joints to pop out of socket every day. Oh, you would think that was enough but Jake was also having mouth/teeth problems that needed immediate attention, but was so risky because of the severity of his teeth cleaning he would have to be hospitalized and put unconscious to correct the problem. So we were being faced with at least 3 surgeries that needed to be done, they were actually ordered and I had cancelled right before because Jake was too weak and fragile. I was so worried for my little boy and wanted to keep him healthy, happy and comfortable but at what cost? Did Jake really want these surgeries; could his body fight to recover from each one? We were back to treating each of his symptoms and keeping him as comfortable as possible.
It was now February 2009 and in this frame of mind with all of these heavy decisions weighing on me we decided to get Jake out, we needed a change of pace and some sunshine. We loaded up the family and headed to Arizona to visit Vickie and her family. It was just what we all needed, the kids played outside Jake smiled for the first time in months he even seemed to be able and breathe better. I don’t know if it was from the lower elevation or what but Jake did GREAT! We had a great time playing and even made it to the zoo- Jake had so much fun, none of us will ever forget that trip we needed a little sun and more importantly a smile from Jake to lift our spirits. It was also great to spend time with Vickie and her sweet family everyone loved being outside and Jake was doing great. Maybe a new start in new surroundings is just what our family needed?
Things back home weren’t doing very well in the development, real estate markets and Joel was under a lot of pressure. There was a possibility we were going to have to sell our dream house, Jake’s house and start all over. It was hard enough to have the health issues of Jake wearing on us, but now with the fall of the real estate market and Joel possibly loosing everything he had worked so hard for it added to the stress level of our family.
We did make it back to our home and continued to fight the fight, get up each day make the bed so you are not tempted to get back in and work all day to the point that you fall back into the bed at night. Jake perked up a little bit and everyone was back in school finishing up the year. We were not sure what was ahead for us but we knew one thing for sure we loved each other and would work to keep our family strong and united.
He's My Son
I'm down on my knees again tonight
I'm hoping this prayer will turn out right
See there is a boy that needs Your help
I've done all that I can do myself
His mother is tired
I'm sure You can understand
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son
Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there
Can You hear me?
Can You see him?
Please don't leave him
He's my son
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