Monday, September 12, 2011

*Chapter 11* - "It Is Finished"

It was an ordinary day on Monday June 8th the week leading up to it was ok Janessa graduated from 9th grade had her lagoon day with all her friends talking about the excitement of starting high school together. Monique had to end 6th grade a week early to start her training for nationals she is preparing to go to in July with her dance company- she is more than ready and anxious to start middle school in the fall. Tyler due to year round school has been off track and scheduled to restart he has enjoyed the Lake Powell trip we just went on as a family and doesn’t want to practice his drums for his coming up lesson. Brock being the youngest gets to hang out with me in making sure everything functions and the family continues to move forward. Jake just finished school on Friday the end of 1st grade who would have thought he would have gone to school and be 7 years old? We went to thank all of his teachers with a little gift of appreciation and give his classmates a gift for being such great friends- this was a sad year because the school was being divided and all of the kids would not be together next year. We gave everyone hugs told everyone to have a great summer and we would keep in touch for next year. How were we to know that the precious years would be coming to a close. So on that Monday we get up early to take Janessa to EFY, we have planned it for months and the day is finally here. Janessa and Brittney (her cousin) are going to be roommates for 1 week at BYU as moms we hope for different things as we drive to the VIBE to drop off Monique and Ashley for dance then down to Provo. We stop for breakfast one last time together we laugh as Wendy spills strawberry crepes on her new shirt and talk about all the cute boys they will meet. We run to Wal-Mart to get extra snacks for their stay then down to BYU we find parking and right when we got out of the car we were right cute boys! The excitement is building we find our line to get in and anxiously await for the exact time 11:00 am arrives and the girls get their rooms and schedules to have a great week. We run to their apartment they are staying at the Riviera this is were Wendy went and lived for college years before the circle of life has come full circle. We move their beds and get them unpacked as Janessa is all ready missing the comforts of home Brittney can only think of the fun that’s coming. We get them some lunch and give the last set of hugs and kisses that has to last a whole week. We know they are safe so off we go laughing at how this will be a great experience for them. At home we thought it would just be a normal day Tyler and Brock are playing and Jake is in his bed. He has started crying more seems a little off his game. Is he getting a cold or sickness (it is June- this should not be the case if we get through the winter we always have the summer.)? It had been a long winter and Jake had a hard time from the middle of November until the middle of January Jake needed to be home and Joel or I needed to be with him at all times.

So why was this day any different than all of the other days we have had for most of his life. We can’t count the times hospice has been called in to help Jake and he has only been given 24 hours left to live and he always makes it through. He was not supposed to come home from the hospital in August of 2002, he was never going to make it to 3 years old and for sure he would never be able to attend school. But Jake did make it through all of these things and more. He lived his life- it was a different life but it was his!!! And it was our job to make the most out of everyday he did because every day he would fight to breathe and live (that has a lot pressure). But through simple things we would have joy and happiness. The smallest of acts like swallowing your own spit would be huge for Jake like climbing a mighty mountain so why was this day any different? Because mom had a bad feeling- an instinct after being with Jake everyday for his whole life (except for maybe 7 days) we had learned to communicate the best we could and something was not right. So Joel and I make our plan like we always do, he takes the boys to go pick up Monique and I start my phone calls. Which doctor do I call this time who will make sure to give him all he needs they all always do. I start with his specialist at Primary’s mostly to keep her updated because 2009 has been a hard year and I HAVE to do more than what’s possible to help him –we have been working on trying new things, was this possibly another piece of the puzzle? Jake was getting worse in a matter of 20 minutes so I get his pediatrician who is always there with anything I need and I just say something is wrong with Jake I will be there in 20 minutes I grab his feeding tube pump and we’re off. We sign in and watch the turtles as Nurse Melissa gets us a room. I am carrying Jake wrapped in a blanket holding him up so it is easier for him to breathe and swallow. Jake’s chart is the biggest you’ve ever seen about 3 inches thick of papers of the medical history of our little boy who has had so many things done to him but still not sure on what’s wrong and why Jake’s “electrical” system does not work. He looks “normal” but something is clearly wrong. Dr. Hansen (we call her Kim) comes in we catch up quickly –Jake’s doctors became some of my closest friends, next to my sisters I would end up talking with them more than anyone else. We go over the past tests Jake has received and try to make sense of what is happening and what needs to be done. After checking him over we decide he needs a chest x-ray and CBG (blood work) we decide just a finger poke will do because only the IV team at primary’s is allowed to take blood ,due to our extensive experience, but we wanted the test done asap at a closer hospital. I get our orders and run over to Alta View the closest place to get x-rays and work done. After the same old routine me and Jake have it down all of the questions are memorized as we check in and hurry down to radiology they get me right in as I explain how we need these pictures done I hold Jake on my lap and comfort his as we hurry – he does not like having to pose for x-rays. The pictures work and I put a STAT on it and tell them I will be right back for the results after the blood work is complete. They haven’t met me and are surprised how pushy I am. They would have known better if they read his chart “psycho anal mom” next to Jake’s name, he needs a voice that can speak and stand up for him and that voice is mine. So off to the lab for the blood work. Me and Jake sit in the corner and wait for the right person because you only get one chance with Jake- with what he has had to endure he deserves not to get poked twice. An older lady comes in and together we get the test done. Jake did not even cry this time as we squeezed each other tight. It’s over Jake and I snuggled as I tell her we are waiting right here for results. Fifteen minutes later she comes back Jake is doing ok in some areas but not other areas. I tell her the doctor wants to know his PO2 levels she told me 65 I said ok goodbye and thanks I run back to radiology to get my results where my doctor is talking to radiologist on the phone about the results. They hang up and I call her on my cell she explains to me that Jake’s lungs have some white in them it is not pneumonia but he is probably aspirating on saliva, stomach acid and other fluids as he cannot control his swallow correctly. We have known that Jake has been doing this for 1 year but he has always been able to protect his airway. He clearly now is getting weaker and it is so hard for his little body to swallow. Because the test we did in the doctor’s office came back negative for a virus (which in the past is usually the answer we get wait 7-10 days) we know there is bacteria in his lungs and we decide to start an antibiotic to help fight any infection, Jake also has a small fever. Her bigger concern was the 65 number and told me the proper range, Jake was way high. At this time we discuss options –they always seen to be the same putting a trach in him, going into primary’s to be admitted or going home calling hospice and see how he does. These decisions are never fun and always bring you back to the question is this the time? Could Jake possibly not make it through this one? My mom finds me at the hospital as the tears start to flow. I all ready know what we must do Joel and I have discussed it so many times before. We are going home, we set up a plan to get oxygen, medication call hospice and prepare once again if this could be Jake’s last night. I hold and squeeze him tight give him hugs and kisses as the tears are streaming down my face I gently place him in his car seat and slam the car door with frustration and pain with thoughts of not having Jake. I call Joel and tell him all that has happened and the other end of the phone being quite speaks volume's. Having the extremely loving, kind and involved family I have the calls quickly come in what did the doctor say, are they sure, we have heard that before, and dude it’s Jake. But none the less as we get home and take care of Jake and just snuggle with him on the couch support comes yet again. My checks are rubbed and squeezed by my dad’s ruff loving hands as he tussles my hair like I am 5 again. Loving hugs from my mom and my sweet sister Wendy and Von who come over with cookies and grapes and time just to talk. My kids know something is wrong when everyone runs over and anxiously and quietly sit on the couch next to Jake. To clear our thoughts we watch the Disney channel. We assure everyone things are ok put the other kids to bed and wonder if Jake will be able to rest. I get him in his pj’s turn on his soft music and light up his room with stars like we always do, snuggle him up make sure he is comfortable and lay down to watch him breathe, his room is in our room so I am always there to see and hear everything. The night goes ok and we again think Jake is tough he is going to make it, just like he always does.

I check in with my doctors the next morning and tell them the medicine is working I think he will pull through. Little did I know the roller coaster the days would be. We get everyone ready for a new day Tuesday June 9th you never know what the next 24 hours will ever bring. We do the normal things all morning get the boys dressed and fed they start playing with their tractors while watching cartoons get Monique off to dance practice make Jake’s food and make sure he has all his medicine start talking to the doctors about his breathing numbers and how he did and what is next. We decide to go get his CBG repeated at Alta View so we could see in 24 hours what was happening. Jake is so tired and sleeps off and on most of the morning I get everyone situated and make plans to get him back in. It is about 1pm when Jake is dressed and we are in registering again we finish up go to the lab and need a repeat from yesterday take our same seat in the corner and wait this time we wait about 45 minutes the same nurse comes in from yesterday and says what are you ding here I say what do you mean Jake PO2 was 65 she says WHAT! Runs to get his results from yesterday and says no his number was 26 his PCO2 is 65, 26 is totally normal so again we call the doctor to confirm no poke for Jake today it is another false alarm we talk about what to do if he gets worse but those numbers look ok. This is a happy time as we walk to the car and I gently load Jake up again and call everyone, Joel was first to hear just another false alarm he is getting his carbon dioxide out. He still is a little weak but we will just nurture him and get him better. The rest of the day was much better as we resume life as normal. I call to cancel his dental appointment on Wednesday because it will be too hard for him getting his teeth clean with extra secretions. Joel drives the kids around and works on all the errands as I stay with Jake. Wednesday night a neighbor has a wedding celebration Brock is Joel’s date and go together so I can stay home with Jake. We didn’t get much sleep and with all of the emotion of taking care of Jake my emotional reserve are on empty.

For the past 7 years making sure all of Jake’s needs and wants have been met, raising our five kids one has asthma, one was diagnosed with type 1 diabetes (extremely difficult) we are having financial stress and Joel has basically lost his job which has maxed out Joel’s emotional reserves as well. But with bankruptcy looming losing our company Jake's Custom Homes LLC that was built after Jake and having worked so hard to loose most everything now has caused Joel extreme emotional distress. His plan would be to take the family and leave the world behind, to find some peace for us all by living on a yacht and traveling around. I do not have the time to go into details as there have been hours of talking on the subject. Bottom line it could be great for Jake to get out and see and live but the logistics of getting medical supplies for him and Tyler with his diabetes worries me. Not to mention two teenage daughters with lives and friends that DO NOT want to go. It has caused quite a stir in the family. So as I am tucking Jake in for the night I mention to Joel that there would be no way to take Jake on his boat I believe the pressure had built to high and Joel left his room clearly disappointed feeling trapped in a black hole with no way out, almost every aspect of our lives were struggling at the same time. As Jake continued to cry I somewhat yelled at Heavenly Father looking upwards and said I am done you have taken me to the very edge of a cliff and I have fallen over I can’t do it anymore Jake is struggling, our lives that we have build are falling apart, my relationship with Joel is strained it is too much pressure I can’t do it anymore you need to change and fix things now. Exhausted I fell into bed. With this rough night still in my mind as the sun came up for another day I had to run to my doctor’s appointment and be home before Jake woke up. We started with small talk as I do not hide my feelings well and my nurse says what is really going on. I relay my feelings of Jake, our financial worries and to top it off I think my husband has lost his mind and wants us to go and live on a boat in the Caribbean. She gently told me of her experiences that they have had to go through bankruptcy as well and starting over it is not the worst thing and invited me and Joel to talk about it. With all of these things in mind I finished up to drive home and take care of Jake. Jake is on the couch when I get home and does not look the best he is not getting over this as quickly as I’d have hoped he would. I give him more oxygen, keep suctioning him slowing down his feeds emptying his bowels but he would still cry when he coughed, he still just wanted to lay down and was just a little lethargic and weak. I make sure he is comfortable and take care of mundane things like cleaning the house and figuring out what is for dinner. Monique has a solo practice for dance I go a few minutes early to watch and am amazed at how well she is doing she is practicing so hard when she turns her pony tails goes flying out I mouthed the words “WOW”. I felt joy at that moment with her we pick her up and back home we go. The rest of the night is much like the ones before roller coaster for Jake some moments are good and you think he is getting better others drop and it gets scary and worry sets in what to do next for little Jake. Friday morning June 12th comes early I weighed Jake he is 38.6 lbs. and give him a bath he loves to have his hair washed a sit under the 5 shower heads that were built just for him I have to hurry and clean the house for a showing later that day as it has been decided to try and sell our home. Just as we are ready to go Jake’s has a diaper explosion Joel tries to change him but there is too much to contain, and the poop is all over Jake and all down the couch and cushions. I take Jake for another shower while Joel works on the couch and smell. Other people are bothered by that but not us as this is a common happening we get everyone changed grab Tyler and Brock. Monique went to school for her last day of 6th grade and Janessa is still at EFY. So off we go to Carl’s Junior for lunch for the boys to play while there is a showing of the house. We get there and start the unloading process, because we need to sell our truck that had a wheelchair ramp for Jake and his wheelchair- we were able to find a new wheelchair that worked like a stroller and with help from his PT at school we ordered a new chair that was so comfortable for Jake. The chair was delivered on Monday June 8th my dad and Joel had put it together for me that night, it fit him perfect and he looked so comfortable. This is our first outing using his new chair. We get in to Carl’s Junior and to our surprise there are tables of neighbors who are there for an outing with their kids. It was great to see everyone I used to go on these outings when life was not so complicated and my sweet friends would always still call and ask if I could go even though every time I would say no but thank you for the invite. We were able to talk catch up on things as they would say Jake doesn’t look that good, how are things going? Joel would talk about his yacht idea. The kids would play together they had fun we finished our lunch and back home we went. We placed Jake in his new wheelchair and he feel asleep again this is so unusual for him he usually can not fall asleep unless I give him medicine for that purpose. We get Monique home and go to get her hair cut and stop at the bank. We make arrangements for Joel to get out of the house and take the boys golfing with Von and their cousins. Monique is preparing for a sleep over with dance friends. As I go to change Jake’s diaper before we drive Monique to Provo he is still trying to sleep and cries if you move him. It has been too long and I get a sick feeling that things are not getting better the medicine is not working this time. I decide to plug him into his Pulse Ox to check his saturation levels he is at 87 and dropping this was not good at all you need to be at least 90. I don’t want to panic and need Monique to get to her party so I grab some oxygen stop his feeding machine and place him in the car propped up with pillows and start to drive, he keeps falling out of his car seat so Monique hop’s in back to hold his head straight. We give LOLA (our GPS) the address in Provo and I immediately call my doctor of course it is 5:30 and we just missed them so I go through the after hours doctor (who also knows Jake well) to let her know something is off and I need an x-ray and CBG. I wanted to just go to Alta View again but the radiologist have gone home and would not get results until tomorrow. Well that would just not do this was Jake and I wanted to know now! The doctors all communicated and let my pediatrician know what was happening we get everything worked out and decide it would be best to go to Primary’s and have the 2 test done we make all the arrangements by the time I drop off Monique walk her to the door give her a hug tell her I love her have fun all the time my heart is racing for worry of Jake. I program LOLA to get me to the hospital asap coming from Provo took me longer than normal but I finally get there and run to radiology just carrying Jake they have been informed I am coming and hurry to get his tests done. The X-Ray pictures are taken Jake is breathing hard and looks worse I just hold him and hum in his ear the whole time. I told them I needed results immediately, and I will not leave until I have spoken to the doctors. We waited and waited what seemed like forever but it was only 20 minutes the radiologist did not want to talk with me. So they patched me through to my on call doctor waiting on line 1. She said they found pneumonia in his lower left lobe. My heart sank my knees buckles as I was holding Jake trying not to fall over and my eyes filled up with tears. My voice shook when I asked 3 times are you sure. I could not and did not want to believe what I was hearing. Over the years when he was so sick and I was sure he had pneumonia I was always told his lungs were ok he was protecting his airway. I squeezed Jake in love as the pain of the words penetrated and I know what it meant. I hang up as I think they said Jacque will you be ok? I tell the tech thank you and need to get to inpatient labs to get the blood work done. The nurse goes with me and carries his oxygen tank for me I cannot let go of Jake we find our way to the second floor by surgery to have our labs done. I sit in the chair tears streaming down my face trying to accept what I have just heard. We start again getting his paperwork done to get his labs they come poke his finger he lets out a cry as he instinctively squeezed my other hand and we gather his blood again I tell them I will wait . My pediatrician has tracked me down in the lab as there is a phone by my chair. Jacque she said how are you? I could barely choke out the words “ok, is this real are you sure”? We talked she said so many times I’m so sorry, I’m so sorry. But my tears just kept falling on Jake its ok I said we’ll just wait and see what happens. Do you really think this could be it? I think so was her reply. We waited until I got the labs back his PCO2 went from 26.2 to 33.5, is PO2 went from 65 to 52 his oxygen saturation was 88.7 all of his numbers were going against me. Kim asked me if I wanted to admit Jake in the hospital we could try IV antibiotics, pumping out his lungs and traching him with a ventilator. I looked down at my son still trying hard to breath and crying said no I promised him when he was 3 months old I would never stick another rod down his throat to make him breath. As much as I would have wanted to save him and make him live this was Jake’s decision and though he could not say a word his eyes said it all. I will take him home he does not want to be poked or prodded let’s see what another 24 hours will bring. I carried my son it took all my strength to get to the car sobbing uncontrolled now I placed him next to me in the front passengers seat tucked him in screamed out loud and made it to my seat. I tried calling Joel and my sister Wendy and somehow said the words I was just told. The pain was to deep what would I do. My eyes were to wet I could not see past my tears to drive then suddenly in the hospital parking lot a small blazer pulled out in front of me I could see his red tail lights and started following him going ever so slow singing Jake’s song “Angels Among Us” as I have on so many other times to and from the hospital it was our tradition. I held his hand squeezing him holding on so tight never to let go I was surprised how that blazer was going the same direction I was I followed him about 45 minutes all of the way to Draper and exited at the Bangeter Highway. I know my Heavenly Father sent me that car to follow home safely I pulled up to the house with Jake and sat in the car with him quietly maybe we could blink and none of this would be real but every time I opened my eyes he was working harder to breath my sisters were at my house and came to get me out of my car along with Joel. I brought him in his room found some comfy pj’s and laid him in bed. My sisters put Tyler and Brock to bed as we went over all that had been discussed. Janessa called me frantic screaming and crying “what is wrong with Jake” is he ok? I assured her everything is ok please calm down uncle Von is coming to get you she wanted to be home we could not get a hold of Monique and decided to let her stay and pick her up in the morning. I gave Jake his 1st dose of morphine to take away the air hunger feeling making sure he would not feel any pain. At around 11:30pm Janessa arrived home she checked on Jake he was resting comfortably and we went to the kitchen made some hot chocolate and talked about all that had happened at EFY this week . Her cousin Brittney was her roommate and together with Wendy, Stephanie, myself, Brittney and Janessa found a way to laugh about meeting new boys and running in the rain. Joel was all ready asleep when everyone left and Janessa went to bed Jake was sleeping peacefully so I lay down next to Joel and held him tight. Saturday morning came early I sent Joel to get some milk and juice and to bring home Monique. Doctors started calling and hospice was on their way I set up a little hospital station next to my bed where we each just took turns holding Jake. He was not getting better and every time we checked his lungs they would sound worse but I could still not accept for certain what the next 24 hours would bring. Many people have hung on for hours to weeks. I was still hopeful if we kept Jake comfortable and rode the roller coaster with him hoping he could make it longer, I would take every moment I could get. I wanted to get him outside for a sunny walk in his new chair he loves to be outside but every time he was awake it was raining It was the coldest wettest June with record breaking weather. We would push him around the house and place him by the windows to feel the sun when it showed or just look outside. We decided to let Vickie my sister in Arizona know his condition and my brother Darren. Mom and Dad had left on a quick trip when we found them they came straight back. Jake was kept comfortable all day he had plenty of food so I knew he was not hungry, I changed maybe my last poopy diaper and gave him plenty of oxygen and morphine to keep him feeling ok. We set up camp on my bed and never left I rocked him for hours holding him talking to him loving him everyone was around just like normal but it was not quite normal or very quiet, Jake knew we were all there. I only set him down to share him with others- Janessa and Monique held him as long as they could then just stayed right by his side Tyler and Brock were in and out Grandma and Grandpa showed up later with much concern. Some how the night came again when everybody was here we decided to give priesthood blessings. With loving arms of all the men in Jake’s and my life with their combined priesthood gave Jake an amazing blessing. Then Joel and I also received inspiration to help us through what was to come. Much was said in our blessings they were powerful gifts of love from our Heavenly Father- Joel will have better days ahead Jake has lived his life, he chose to come and knew he would have the body he had and he has filled his purposes, he could have left sooner but chose to stay, his purpose has been fulfilled. God chose me to be his mother because he knew I would take care of him, but it is time for him to go he is being called back and I need to let him go I have done all I could and more the Lord is well pleased and can spare Jake no longer. What hard words it was hear I asked my dad who gave me my blessing “if they were his words”? He said no Jacque it was not me. How it pierced my heart regardless of what we do medically the Lord and Jake have decided Jake agreed and his time is coming to an end and I must let him go. The pain and sorrow I felt for me I LOVE HIM too much I don’t know how to let him go we have very seldom been separated in 7 years 1 month and almost 1 week. The night went on I held Jake close, I talked to Tyler about the blessings and what was happening tucked him and Brock into bed. Grandma watched a movie with the girls and the night slipped away. Sunday morning the 14th came being so emotionally drained I woke up early to check on Jake did a couple of loads of wash before any one woke up and I cut Jake’s little side burns it was almost time for a haircut for him which I always do to be careful with him but today decided to just trim up around his ears, we washed him off to make sure no hair was on because it can be so itchy. When I was getting him dressed in his blue sweats that are so comfortable I decided not to spend the entire day inside. The girls went to church with Stephanie and Blaine the boys got up were fed and dressed and went outside to ride their scooters grandma was in her camper outside watching them all the time Jake was close by on a pillow in his new chair in the kitchen . He looked tired and slept most of the day. We placed a warm blanket on him and just stroked his check every passing moment while I did ordinary non important house chores. When everyone got home from church I wanted to get Jake outside the rain kept coming but we had a small window everyone jumped in the car we kept Jake in his chair and lifted it in the back of the car. I sat there with him and we went 1 short mile to the new Draper Temple Wendy and her family met us there we took Jake’s chair out and went for a ride around the temple bouncing on the grass and looking up having comfort with the blessing of knowing that no matter what happens we will be sealed together forever Jake will be mine forever there could be no greater gift!
With thunder storms surrounding us heaven opened up a little spot and we did not get rained on. But with drops approaching we had a short trip and went back home. My entire family came over all 30 Poulsen’s were there to give love and support, Vickie in Arizona had packed up and decided to leave the moment she heard to drive up. I picked up Jake and held him I sat on the couch with Joel and with all of the commotion around us we ignored everything and just held Jake together. The movie Transformer was on and people would come see Jake touch his check ruffle his hair and pat me on my shoulder. The night moved along they rounded up food for everyone ate cleaned up and one by one said by to Jake- We Love You, I think at about 9:30pm the door bell rang and it was our Bishop wanting to check up on us I assured him we were ok we had small talk about knowing where Jake is going and we started to discuss the other issues in our lives our financial situation and how we are going to make it through. The yacht idea came up and with strong feelings our loving Bishop said worst idea ever we need something else what a relief for me and heartbreak for Joel. How this was also another blessing in disguise trying to avoid or hide from problems is never the answer, it helped us both face how to go straight ahead with such a difficult road to go through. I know he was inspired to give us the message he did possibly because we could not hear our Heavenly Father through all the confusion and frustration in our heads. He was called to be our Bishop at this time and served us so well. He called all the kids around us and talked to each one about how they were feeling we were all given the sacrament as a family service; it was the last one Jake was able to attend. He gave us all hugs told us to hang in there and he would be back soon. At about 10:30pm I felt anxious like I needed to hold Jake he was getting worse and I was really scared my heart was racing I called Wendy screaming wondering if this was it. I hugged and squeezed Jake and held him in bed next to me Janessa come in and laid down on his other side and never let go of his hand Monique was at his feet we never went to sleep that night checking his stats listening to him breathe worrying and praying . My mom and dad showed up around 1:30 am Joel was on the floor, my mom and dad just sitting in chairs counting the seconds between his breaths. I held Jake all night and he squeezed my finger time and time again with such strength like he has not been able to do for years and somehow said “it is ok mom, let me go this is what needs to happen”. Somewhere during the early morning Joel suggested we turn off the oxygen and stop his feeding pump as fluid was dripping out of him. We turned off the oximeter as the numbers dropped to 0 I could not stand to hear the alarms anymore. Feeling hurt, sorrow and pain I took each minute I could have. Dehydrated from crying and tasting my salty tears I held my precious son as he slipped into a coma never again to open his eyes until his last breath.

I’m not sure how but dawn came the sunshine lit up our room and it was a new day. Monday June 15th was this the day Jake would pass surely he couldn’t make it through a whole day I started calculating how long he has been on earth, how I tried to make every day count for him every day special because of the incredible spirit and son he is to me. Was it enough? Had I done everything humanly possible, visitors started arriving early our Stake President who was there at the beginning who helped in organizing a stake wide fast for Jake that would be a miracle in extending his life. Our bishop was back all of the family my sisters being protective of me and sheltering me from the outside world cancelling all activities for the kid’s haircuts and dance would have to wait. Hospice nurse Russ coming to check on him giving me more morphine and letting me know it’s only a matter of time. My legs and back are bent and not working I cannot stand up straight because I have only set him down to go to the bathroom and let his sisters and close family hold him, I wouldn’t change a thing. My sweet visiting teachers Julie and Jenica which were great friends get past the guard Wendy to come see Jake. They have a special relationship being the only 2 people (mother and daughter) who were Jake’s primary teachers 1 year earlier. They always know exactly what to say and are the most generous people on the planet, what can we do they asked all that came to my mind was “I need molds of his hands and feet I said” They were right on it a few hours later they were back with a staff to make his molds. We held his limp body as we took molds of his hands and feet, what a treasure that will last forever and always give me something to hold when I cannot hold Jake anymore. Jake’s pediatrician and nurse came to the house reassuring me that all has been done that can be done for him and that he is comfortable his heart is strong and needs to stop beating. With tears they gave me and Jake a hug and told me they would check in later. Each passing hour everyone so surprised how even in death Jake is a fighter – each moment his body keeps going not for him but for us to try and find a way to say goodbye. Vickie and her family made it from Arizona they all came in with hugs and love to say goodbye. You will never be forgotten, you will live on in us. How you have changed all of our lives for good. We will continue to fight the good fight for you so we will see you again. He gave cousins “rock” handshake and I said for him “take a tube ride for me at Lake Powell.” How deep it sinks in that nothing will ever be the same again. All of our lives were built around this little boy who forever changed who we are. How do we go on how does anything go on. Evening draws closer and we need to go get more morphine and take a drive to look at cemeteries. We drive with my mom and dad to the 2 places we have in mind. One stands our vividly and my parents were inspired 7 years ago to make plans for Jake in this special place. There is a peaceful feeling as we leave to go home this is where Jake wants his body to be placed. There is nothing more to do now but wait. We get home and make Jake comfortable we try to get everyone to sleep. My vision is blurred as I talk with hospice one last time he leaves me LDS general conference talks on death but I just want to hold my little boy. I lay him down in the middle of our bed as we are told you have to give him a blessing to let him go, he is holding on for you and won’t leave you. How do I do this? That is too much to ask I love him to much to say the words out loud. If this is the Lord’s plan that is ok but getting me to agree to it and purposefully letting my son go I don’t think I can. As we look at Jake and know there is no turning back his body exhausted his skin is white his mouth and fingers are blue no one understands how his chest keeps raising and falling Joel and I in our arms come together. Joel gives him one last fathers blessing and sets his spirit free from his broken little body, we thank him for allowing us to be his parents and let him know he will never be forgotten, we will be together forever and I cannot wait to see him again. We tuck him in and leave the room as we were told we needed to or he would not leave. Walking only to the kitchen I can not stand to be away from him. As my loving sisters, say go back “its ok”. I run back to him only being gone 30 seconds and snuggle under his blanket I bury my head into his side and squeeze his hand as I had so many times before. And with his breathing getting quieter I start to fall asleep trying to fight it to stay awake and have every moment with him but after 2 days I am overcome and fall asleep holding onto to Jake. Family still come in and out to see if it is time in the next few hours. I can hear and feel Jake and know he is still with me. At 4:00am Monique comes to lie next to him. Somehow around 4:30am while Joel was next to him his mind was enlightened and he was able to see Jake returning home to a marvelous reunion with so many loved ones around him. The words were sent to his mind “it is finished, his work is done, it is time for him to go home”. By 6:00am Joel drifts off to sleep again. By 7:00am he has infection draining out of his mouth. My dad gets me a warm wash cloth and I gently clean him face wash out his mouth, comb his hair and put on a clean pair of pj’s. Jake looks more comfortable now breathing ever so shallow. We count his breaths they are 20 seconds apart. My dad wakes up Joel as we both watch anxiously is this the one? No, one more breath comes, than one more. Jake open’s his eyes fully and looks right straight at me as though he can see me again. Takes one last breath and closes his eyes for the last time at 7:32am on Tuesday morning June 16th 2009. IT IS DONE, JAKE IS GONE.

I scooped him up in my arms and went outside to our bedroom deck where the sun was just coming up over the mountains and holding Jake tight opened my mouth. Out came an outpouring of my own soul, I felt my insides come out of me in a way I cannot describe. Screams of pain and torment were heard and I liken it to my own Gethsemane. There will forever be a void, whole, emptiness that went with Jake when his spirit left that beautiful morning. It will not be filled or replaced or forgotten. But make me more determined to progress to be worthy to be his mother at a later time. What could I possibly do with my day that would be worth any value now? There will never be anything more important or of a higher value than serving Jake.

The next days are filled with putting together one last tribute for Jake his funeral. By 7:45am his brothers and sisters are by his side with last hugs and kisses and tears. The room is calm and peaceful no Heavenly bodies like I thought, but oh, what a joyous reunion they must be having on the other side right now. Just as we are gathering for the deepest loss, they are rejoicing in a perfect angel returning home to his Heavenly Father to hear job well done, son. The next hours are peaceful as all the family comes in for support, plans are made, assignments given and everyone off to do their work. Joel and I are left home alone with Jake we bathe him and dress him wrap him in a blanket as we talk of his life and cry hoping we can do what is required of us to get through the next few days at least. Driving past the cemetery to meet my parents that have picked out a perfect place for Jake under a big tree. On to the mortuary where I hold Jake as we select his casket write an obituary and finalize his plans. Then the second most hardest thing I have ever had to do- having to hand Jake to someone else I couldn’t do it. It was too much to ask of me. I still wanted to just hold him I know he is not here but I still just want to hold on to his body forever. I’ll love you forever I whispered and gave him to Joel; Joel was able to give him to our mortician Bro. Cannon. Walking out of the building without Jake came extreme emptiness. Holding Brock was the only reason I did not collapse right there on the floor as my mind said to my feet just one more step, just one more step. We met later with an outpouring of love and support from neighbors and friends with gifts. We are so blessed to have such an amazing family and their generosity was incomprehensible. They had taken care of every detail spared no expense what an amazing feeling of love and gratitude. The flowers were done; I had a new dress, shoes and jewelry hanging up in my room. A new 3 piece white suit for Jake all of Jake’s pictures and videos had been burned to make a video for his viewing- every detail taken care of. My parents helped cover his burial expenses there truly are blessings in times of loss. How Heavenly Father knew I would need this family unit there are no coincidences He has a plan for everything and shows us how he makes arrangements for us. A little later my in-laws gave us the gift of time together for Joel and me to try and heal with time together. Everyone was so kind. On Wednesday the family went to see Jake again, my wonderful friends Julie and Jenica went the extra, extra mile and found another person to come and make some more molds of Jake’s hands. Every family member was able to have their own mold holding Jake’s hand WOW! What a gift that will be treasured forever. When we were alone with Jake again Joel and I and gently dressed Jake for the last time. He was so handsome in his 3 piece suit he never complained about what he was wearing and today was no exception. We wrapped him up in his blanket, he looked so great and so peaceful he had a tiny smile on his face I think he put it there himself to let everyone know he is ok.
There was a viewing on Thursday June 18th with a closed casket and 2 rooms set up with memorably wheelchairs, pictures, shoes, braces he wore to remember Jake. Many people came all of Jake's school teachers, his doctors, friends and family a little class mate Garret and his mom and dad. He has cp and a very handicap body but a clear understanding in his mind after we hugged and cried Garret knew his friend Jake was gone I think Jake came and told him goodbye I will see you on the flip side. Garret started to scream and cry as well I recognized his pain as I felt it so much myself.
Friday morning June 19th came early we ran to the church to meet Jake and wheel him in we opened the casket for family and close friends to see him. I stood by his side and held his had the whole time as I had so many times before in his life. So many people who have been touched by Jake came to say goodbye. It was time for our family prayer, as everyone was excused so our immediate family of 7 could be together one last time. It was time for the third hardest thing I could never imagine seeing myself doing. For the previous few days I told the kids to think of something they wanted to give Jake to keep. It was hard to think for last one time what gift we could all give to Jake. Joel and I were the first to go I placed 2 pictures with letters on them to Jake, pictures of our family- we will not be complete as a family until our savior reunites us together forever. A picture of a family trip and how with Jake we all truly lived to our full potential we will always keep with us the memories we created. Brock stood up on a chair next to him and gave him his silky blankee if you know Brock this is truly amazing he is never without his blanket and he yelled by Jake love ya. Tyler gave Jake stuffed animals his little dog that winds up and hymns a sweet lullaby Jake has slept with this dog every night since he was born and his vibrating teddy bear that lights up so he will never be lonely. Janessa was next with a letter she wrote to him and took off her CTR ring she has worn for the past 7 years and placed in his hand and squeezed his fingers closed. Monique was next with his make a wish memories. Jake was given a token for one last wish and 2 keys to the make a wish room. She placed them in his pocket and he took his wish with him. With all of the gifts given it was time, we all hugged and squeezed and kissed Jake as we tucked him in one last time. As a family we all pushed him into the chapel as we have been behind him pushing him his whole life. We sat right next to him as one last tribute his funeral. It was truly amazing not a dry eye in the full chapel as the spirit personally touched every person there. (see recording)
We all made it to the cemetery where Jake's little body was carried and gently placed down. My dad gave an amazing prayer and dedicated his spot to be safe until the morning of the first resurrection. All of Jake's cousins placed a flower on his casket and Wendy had prepared a special flower with a bow for each member of our family to give him. He was given the flowers and quietly we all sat in silence. One by one people left as Joel and I waited when we were alone, just like as in his life we needed to make sure every detail was covered. We helped as they lowered his casket into his vault his family flowers were left with him and his name plate. We carefully sealed his vault and lowered it into the earth. It was done now for me as well with tears and hugs Joel and I embraced. We made our way back to our family and loved ones who came to honor Jake. When things were calm I went back to the cemetery and laid down by Jake for the rest of the night and watched his first sunset felt the warm summer breeze and talked and sang his song’s to him. Not knowing how to breathe the loss of what has happened becoming all too real knowing that never again will I see and hold Jake. It was too much to bear. Somehow I felt comfort from Jake he sends me his little bird that he has had for years when you squeeze it says Jacker's, the real bird came to me that night in the cemetery and sang Jacker's for hours, this was his nickname. Each day we make it another 24 hours, and it is a good sign, I only grow to love him and long for him more.

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