This book is dedicated to the life and memory of
Jake Robb LeRoy
May 9, 2002 - June 16, 2009
This book started for me days after Jake passed away as I had thoughts and feelings come into my heart. I believe it was my precious son who knew what I needed more than I did. He knew I would need to try and find a way to heal and rediscover who I am and to accept the new life I would be forced to live without him.
I want my best friend and loving husband to know that I could not do anything without him and together we will walk hand in hand and embrace our son once again. I am so thankful for you Joel and have been privileged to KNOW you are my celestial partner and together we will conquer this life and be together for time and all eternity.
I am in awe of the wonderful children Janessa, Monique, Tyler, Jake and Brock that I have been blessed with upon this earth. You are all better and stronger than I am! I am honored to be your mother and I pray for help each day to help you reach your full potential and become the wonderful, incredible, beautiful spirits you each are!
By reading this book I hope you will feel the Spirit and the Holy Ghost will penetrate your heart and you will feel the love of our Savior. I have been overcome with emotion and tears on every page it has been emotionally exhausting and exhilarating to try and capture that love and hold onto it.
It will be clear to anyone who reads these pages that I was just living a normal life until Jake entered my life and made it extraordinary. I did not do such a “great job” with Jake, he did a "great job" with me, we were all truly the lucky or blessed ones for having him in our lives.
By small and simple things please try to keep Jake’s memory alive, and always remember to work hard everyday to earn the right to be where he is, with our Savior and Heavenly Father.
Monday, September 12, 2011
Spirit to Spirit
Dear little child
what words will I know
to teach you, reach you, and help you to grow?
How will I reach you by words alone when
the language of Angels is all you have known?
As I look deep in your eyes your spirit shines through.
I am quietly prompted as to what I will do.
I will look deep in your eyes with concern and love
while asking for wisdom from our Father, above.
Our spirits will- though no words will be said
then by the power of Love you will gently be led.
what words will I know
to teach you, reach you, and help you to grow?
How will I reach you by words alone when
the language of Angels is all you have known?
As I look deep in your eyes your spirit shines through.
I am quietly prompted as to what I will do.
I will look deep in your eyes with concern and love
while asking for wisdom from our Father, above.
Our spirits will- though no words will be said
then by the power of Love you will gently be led.
*Chapter 1* - "The Beginning"
There is so much excitement when you find out you are pregnant and expecting a new life and family member to come into your home. For the next 9 months it consumes your every thought and action, more than anything else the anticipation and excitement is almost too much to bear. In the beginning you focus on eating healthy, exercising, get plenty of rest, never taking medications or putting anything in your body that would not benefit the growth of your baby. You search carefully to find an excellent medical team that will ensure all is going well to help you have a safe pregnancy and delivery. You do everything you are told with no thought to yourself but just for your baby that you can now feel growing inside of you. A relationship begins to grow with each passing week; you have so much love for this new life that is your constant companion. Everywhere you go you are together you are never alone often times you will talk to your unborn baby and he will be able to recognize your voice. He keeps you up at night and gets excited when your excited. Along the way there is an indescribable love you cannot explain but you would do anything for your baby even sacrifice yourself if you needed to. You are nervous, excited and hopeful that your baby will be born healthy and strong with 10 fingers and toes. And everything you have done for the past 40 weeks will all be worth it when you are able to hold this precious life that has come to be part of you.
The room is cleaned and set-up with new sheets, blankets, toys and soft music. The shelves are full of new clothes just washed there are stacks of diapers, baby wipes, q-tips everything in its place waiting for your new arrival. Your overnight bag is packed sitting by the door, the diaper bag with a new “coming home from the hospital outfit” and blankets ready the car seat is in place. Every detail has been seen to the joyous occasion you have waited for about 270 days is here. One last picture of your big tummy is taken for the memory books grandma is at the house to watch the other kids with excitement all of the arrangements have been made and we make out way to the hospital at 5:30am. Being the fourth child things were pretty much routine I know the drill and things should be fine. The last couple of weeks have been really hard I went into pre-term labor but was sent home the thoughts creep in your mind that something is wrong but you hurry and get rid of them and think it is just the jitters of having a new baby. Things seem to be going ok but then it changes and worries become reality for some, like us on this day things did not go ok. It became a complicated delivery but finally your baby is born and breathing so now everything should be all right or will it?
He is here a beautiful baby boy born May 9, 2002 weighing 9lbs 2 oz and 19 ½ inches long with lots of dark brown hair and an angelic face. Right from the start there were small problems we had no idea what they would turn into. But we didn’t care he was here I was holding my baby surely everything would be all right now. With the complications came other side affects he had an Erbs Palsy where he could not move his right arm. If he was not asleep he was crying we thought it was just colic and he would grow out of it. He also seemed to have a hard time learning how to suck. We can handle anything now he is here and safe and I know if I can just get him home in comfortable surroundings I can work through any problem.
He needed to be checked a lot from his pediatrician to see if these problems were getting better every other day he needed to be weighed, his jaundice was not leaving like the other kids, and if this was colic it was nothing like I have ever seen it seemed he could not stop crying even when nothing should have been wrong. After 2 weeks of doing all we could he was still not back to his birth weight and a lactation specialist was called in to try and help with his insufficient suck and colic issues. The thought came to us that we needed to do his baby blessing right now and so we put together a family party celebrating the new baby in our family at the last moment. The first week of June he was blessed being only 3 weeks old.
Three days later on Wednesday after he was crying about 14 hours a day and I had worn out the same section of carpet in our room from pacing back and forth holding him trying to comfort him. We took him back to the hospital where he was born. When the nurses at the hospital had no more answers, he still could not suck that well and was not gaining any weight his pediatrician said it was time we had done all we could and the decision was made that he needed to go to Primary Children’s Hospital and have a few test done for failure to thrive.
The love between mother and child grows incredibly strong when you spend every waking moment with your baby wanting so badly to ease his pain and help comfort him. Doing all you can and the situation not getting any better. I wanted so badly for him not to cry and was trying so hard to figure out what was wrong. I thanked my Heavenly Father many times that there were only 24 hours in one day and no more so the suffering could stop daily, only to start again the next day. It is incredible how much love there is when you deliver your baby and how much more love there is in only 3 weeks time, my feelings were so strong for him as if he were still connected to me.
The drive to the hospital was awful as I held him close crying wondering what was going to happen and so sorry I could not fix it and take this away from him. Finding your way around the first time is scary there are so many unknowns going through your mind. Parking your car and dreading every step as you get closer wanting to turn around and run to take him home where he would be safe but knowing he needed help no one should have to cry that much something needed to be corrected, maybe it was something simple so that he could relax and be comfortable. Once we were checked in and placed in our first room I sat and rocked him, as Joel flipped through the stations on the TV trying to clear our minds and pass some time- there is always waiting. I remember when the nurses came in with a needle to take blood and I said “no! what are you doing we are just here for a finger poke?” They explained kindly as possible something bigger than what we were thinking was wrong with our son we have to find out what, this is not a simple problem blood work needs to be started. I wanted so badly to hide Jake in the diaper bag and run away as I knew what was coming for Jake. Sobbing with him as he received his first blood draw and an IV was placed monitors attached and a CAT scan done. His first NJ (feeding tube) was placed in his nose and he gagged as he choked and sputtered to get it down to his stomach so he could have some nourishment to regain his strength. I don’t remember who cried more me or Jake but either way it was a harsh reality of what children have to go through. Having healthy children we had never experienced anything like this before and regardless of the size of the body it all works the same, it is routine to many people in the hospital but for us it was agonizing. My heart was ripped out of my chest each time something happened to my son, I held him tight as I watched my son’s body, squeezing his hand I whispered in his ear mommy’s here, I love you everything is going to be ok. Or was it?
The drive to the hospital was awful as I held him close crying wondering what was going to happen and so sorry I could not fix it and take this away from him. Finding your way around the first time is scary there are so many unknowns going through your mind. Parking your car and dreading every step as you get closer wanting to turn around and run to take him home where he would be safe but knowing he needed help no one should have to cry that much something needed to be corrected, maybe it was something simple so that he could relax and be comfortable. Once we were checked in and placed in our first room I sat and rocked him, as Joel flipped through the stations on the TV trying to clear our minds and pass some time- there is always waiting. I remember when the nurses came in with a needle to take blood and I said “no! what are you doing we are just here for a finger poke?” They explained kindly as possible something bigger than what we were thinking was wrong with our son we have to find out what, this is not a simple problem blood work needs to be started. I wanted so badly to hide Jake in the diaper bag and run away as I knew what was coming for Jake. Sobbing with him as he received his first blood draw and an IV was placed monitors attached and a CAT scan done. His first NJ (feeding tube) was placed in his nose and he gagged as he choked and sputtered to get it down to his stomach so he could have some nourishment to regain his strength. I don’t remember who cried more me or Jake but either way it was a harsh reality of what children have to go through. Having healthy children we had never experienced anything like this before and regardless of the size of the body it all works the same, it is routine to many people in the hospital but for us it was agonizing. My heart was ripped out of my chest each time something happened to my son, I held him tight as I watched my son’s body, squeezing his hand I whispered in his ear mommy’s here, I love you everything is going to be ok. Or was it?
*Chapter 2* - "Angels Among Us"
For the next few months there was non-stop probing and prodding, pokes and tests. There were so many doctors trying to figure out what was wrong with our little boy. All of the tests results were coming back negative nothing was wrong with Jake on paper but clearly he was getting worse.
After weeks of Jake still crying and crying and still having no answers we walked into neurology saying “something is wrong with our son he needs help, I will not leave here until I see someone today, I don’t care how long it takes he needs help right now!” Waiting in a pediatric neurology waiting room was a huge shock for us, seeing for the first time what kids can live with was a shocker. Is this the road we are going down? Would this be the course for Jake as well? Everything usually turns out ok we just needed to find out what was wrong and then we would do whatever is necessary to fix it! We were so naïve to the medical world we have never had any other family members with any major or even minor problems for that matter that required a doctor’s attention. We soon learned the hard way what things could be done to an infant body. Sometimes not being able to talk and tell everyone around you what you are feeling and medical testing needing to be done immediately, the only communication a baby has is crying which usually just gets dismissed but I could feel Jake’s pain deep in my soul. That day it was decided to get more information we needed CFS fluid and the only way to do this is a Lumbar Puncture. What that means is sticking a needle in Jake’s spine and pulling out fluid next to the spinal cord without getting any blood in it. We were horrified, and to make matters worse Joel needed to force Jake into a U shape and had to be held there so he could not move. I grabbed Jake's fingers and squeezed as the test began Jake would scream and squeeze back as our tears combined I begged them to hurry. The fluid was retrieved and I thought all was well; I picked up Jake and held him close to comfort him. I was thinking what a horrible procedure I am glad Jake will never have to go through that again. How could we have known what every 24 hours will bring? Within a few weeks the test was incomplete and they needed more fluid to do the study I could not believe what I was hearing Jake had to go through that whole process again? The arrangements were made and Jake was positioned as all I could do was hold his hand and tell him I was so sorry, how I wished I could have traded him places. This time with all the doctors best efforts they could not get a clean sample and after 5 consecutive needles being inserted into his spine and over 10 pokes I demanded they stop nothing could be worth that Jake was done and my voice was the only one he had. I scooped him up and rocked him until from exhaustion from crying and the left over pain and headache from the test he fell asleep. We left the hospital again wondering what was next and how much could his little body take.
It seemed like there was never any good news for Jake so all that could be done were more tests. More arrangements were made for a new test to see if Jake had the disease SMA. For this test Jake had to undergo an EMG test where it measured the electrical activity of a muscle. In this procedure needles were inserted into his muscles and left there to get a reading, I couldn’t believe what I was seeing! When Jake would cry I couldn’t stand it and wanted to pull everything off of him. He also received his first MRI and had to have multiply unconscious sedation's. As his overall condition continued to get weaker and weaker and with no new information it was a risk every time he was sedated to see if his body could rebound. Never before have I been so shocked and surprised as I kept learning the hard way for Jake what had to be done. I used to cry when my babies had to get the PKU test and have their little fingers and heels poked. How I learned what we all take for granted a healthy baby that gets to go home with no problems and have the gift of normalcy in life. It is hard to learn to live with this reality, I was starting to think what would happen if we did not find that normalcy. I would always think everyday things could not get worse but then somehow they always did.
We had to learn a new way of feeding Jake he would try so hard to suck but it took too much coordination and energy for his brain to organize the 36 muscles it takes to suck, breath, and swallow all at the same time. It was becoming impossible for Jake’s body to do simple instincts that all babies are born with. I learned how to pump breast milk and put into syringes with a machine to deliver his food through his nose by a tube. I would do anything to keep him healthy and growing. We had to change syringes every 2 hours 24 hours a day so Joel would help at night taking shifts so one of us could have 3 hours of sleep at a time. We worked to require all of the special equipment at home that they had at the hospital like deep suctioning machine, oxygen and feeding machines. I would not give up and still tried to give him a bottle to see if he could remember how, we tried the Haberman Feeding System (now renamed Special Needs Feeder) and even went to IFA and bought a baby animal nipple to suck that should have been easier for him to use, but nothing seemed to work.
Jake ended up in the hospital again his health declining trying to just do the most basic human functions were seeming to be impossible for Jake. I will always remember the day that Grandma and Grandpa came to visit Jake, right when you open the door to Jake's room it is clear how fragile the life of this little boy is getting. Your mind begins to wander of what is going to happen, how is this going to turn out? We have always held out for the best and had hope. But the tubes and crying and doctors and tests bring you into a new reality that we never knew of. Joel started to fill in the new information to grandpa as they walked out to the window tears streaming down both their faces as they talked about the trailers in the parking lot, anything to ease the pain of what reality we were being faced with.
Jake made it through yet another hospital stay and again we returned home to our crazy schedule, but I would have rather been at home as a whole family then have Jake and I in the hospital. I did not want any moment go by that I could be holding him or just to be right by his side.
At this time I received a blessing that my minutes of sleep will feel like hours, this blessing was a marvelous miracle in my life, I could lie down for 20 minutes and feel like I had slept for 2 hours. I did not know how or why I was being so blessed there were so many little things that I was being blessed with, but this blessing worked every day until Jake did not need it anymore.
Regardless of our best efforts in doing all we could to keep Jake healthy, he found himself in the hospital again. This time it was decided that Jake needed to have a sleep study done. Even though we were all ready in the hospital he needed to go to the RTU (rapid treatment unit) where this test was done and took overnight to complete. I thought how bad could it be it is a sleep study that sounds harmless oh how wrong I was!
The nurses began to prep Jake for the test; I had never seen so many wires attached to one body. They were coming out of his head, nose mouth, chest, finger, hands, legs and toes. It was difficult to even pick him up he was attached to so many probes it would pull on him. Naturally he was screaming and screaming he was so fragile and losing the precious calories (due to crying) we had worked so hard to get in him. It always seemed we took one step forward two steps back. For me it was more than I thought I could handle seeing him like that, I thought of losing it myself I screamed out loud “I can’t do it anymore” but I had to for Jake. It became too difficult for Joel to watch and he needed to leave the hospital for the night we talked and he asked me to come with him, there were wonderful nurses who are capable and trained to take care of Jake during his test he will be ok, I said no Jake needs us! Joel and the nurses assured me he would be ok they would stay right with him. Inside I knew right away I could never leave Jake- I told Joel goodbye and went back to see this night through with Jake. I promised Jake I would never leave him never! I gently picked him up and started pacing again to try and calm him I was crying and yelling at our Heavenly Father saying this is too much he needs help he has had so many blessings why is he being made to suffer so much? Please, please take this from him please help him. To pass this test Jake needed to have deep sleep for I think about 4 hours if he could not fall asleep all of the hours of preparation and crying were for nothing. It had already been several hours and he could not calm down. The nurses informed me that it was taking to long and if Jake could not sleep they would have to cancel the study and try another night. My emotions were high as I looked upward and screamed- please intervene, with all he has endured the least you can do is help him sleep! Please don’t allow this night to be worth nothing! Exhausted I laid Jake down in his bed and tried humming his favorite songs to him. Shortly he began to calm down as I looked up from my own crying I distinctively saw three angel outlines in his room standing by Jake, we were not alone our prayers were answered! As I looked back at Jake he was falling asleep. I whispered thank you, there was a silent peaceful feeling in the room. The 3 nurses watching Jake and I came in and begged me to take a small break so I ran upstairs to pump and get him more milk. When I returned Jake was still asleep and seemed to be doing ok, I lie down next to him and fell asleep myself.
I marvel at how in our darkest hours our Heavenly Father blesses us with what we need to endure all we must. I believe there are angels among us in spirit and in person that night Jake had six angels with him to help us. Three that as a chosen career serve children daily with love and kindness and three spirits that were sent to help when we had done all we could and it was not enough. I know there are angels among us! Jake woke up only minutes after the required number of hours they needed for the test results. It was a miracle- but he did it!
This was our new family’s theme song, everyone memorized it.
Angels Among Us
I was walking home from school on a cold winter's day
Took a shortcut through the woods and I lost my way
It was getting late and I was scared and alone
Then a kind old man took my hand and led me home
Mama couldn't see him, but he was standing there
And I knew in my heart, he was the answer to my prayers
Oh I believe there are angels among us
Sent down to us from somewhere up above
They come to you and me in our darkest hours
To show us how to live
To teach us how to give
To guide us with a light of love
When life dealt troubled times and had me down on my knees
There's always been someone there to come along and comfort me
A kind word from a stranger to lend a helping hand
A phone call from a friend just to say I understand
Ain't it kind of funny at the dark end of the road
Someone lights the way with just a single ray of hope
Oh I believe there are angels among us
Sent down to us from somewhere up above
They come to you and me in our darkest hours
To show us how to live
To teach us how to give
To guide us with a light of love
They wear so many faces
Show up in the strangest places
Grace us with their mercy
In our time of need
Oh I believe there are angels among us
Sent down to us from somewhere up above
They come to you and me in our darkest hours
To show us how to live
To teach us how to give
To guide us with a light of love
There have always been so many angels among us, a kind friend who called at the just the right time, my sisters who always sense I am in need and show up at my doorstep with just what I needed, sometimes even before I know I need it. Loving grandparents and parents who are constantly there and suffering themselves from watching not only their grandchild suffer but their child, how they wish they could remove this trial from us both. Being part of a ward family that gives non-stop service with meals and any help possible.
Yes, I have been blessed more than most to have had wonderful experiences in my life that strengthen me and give me the boost I need every day to continue on. I have had heavenly messengers sent to me countless times, I might not have always been in the right frame of mind to hear them but oh how I have felt them and been loved and comforted when it was not possible for earthly hands to help.
Yes I know for a surety that there are angels on earth and angels sent to earth to help us through our troubles times from our loving Heavenly Father.
After weeks of Jake still crying and crying and still having no answers we walked into neurology saying “something is wrong with our son he needs help, I will not leave here until I see someone today, I don’t care how long it takes he needs help right now!” Waiting in a pediatric neurology waiting room was a huge shock for us, seeing for the first time what kids can live with was a shocker. Is this the road we are going down? Would this be the course for Jake as well? Everything usually turns out ok we just needed to find out what was wrong and then we would do whatever is necessary to fix it! We were so naïve to the medical world we have never had any other family members with any major or even minor problems for that matter that required a doctor’s attention. We soon learned the hard way what things could be done to an infant body. Sometimes not being able to talk and tell everyone around you what you are feeling and medical testing needing to be done immediately, the only communication a baby has is crying which usually just gets dismissed but I could feel Jake’s pain deep in my soul. That day it was decided to get more information we needed CFS fluid and the only way to do this is a Lumbar Puncture. What that means is sticking a needle in Jake’s spine and pulling out fluid next to the spinal cord without getting any blood in it. We were horrified, and to make matters worse Joel needed to force Jake into a U shape and had to be held there so he could not move. I grabbed Jake's fingers and squeezed as the test began Jake would scream and squeeze back as our tears combined I begged them to hurry. The fluid was retrieved and I thought all was well; I picked up Jake and held him close to comfort him. I was thinking what a horrible procedure I am glad Jake will never have to go through that again. How could we have known what every 24 hours will bring? Within a few weeks the test was incomplete and they needed more fluid to do the study I could not believe what I was hearing Jake had to go through that whole process again? The arrangements were made and Jake was positioned as all I could do was hold his hand and tell him I was so sorry, how I wished I could have traded him places. This time with all the doctors best efforts they could not get a clean sample and after 5 consecutive needles being inserted into his spine and over 10 pokes I demanded they stop nothing could be worth that Jake was done and my voice was the only one he had. I scooped him up and rocked him until from exhaustion from crying and the left over pain and headache from the test he fell asleep. We left the hospital again wondering what was next and how much could his little body take.
It seemed like there was never any good news for Jake so all that could be done were more tests. More arrangements were made for a new test to see if Jake had the disease SMA. For this test Jake had to undergo an EMG test where it measured the electrical activity of a muscle. In this procedure needles were inserted into his muscles and left there to get a reading, I couldn’t believe what I was seeing! When Jake would cry I couldn’t stand it and wanted to pull everything off of him. He also received his first MRI and had to have multiply unconscious sedation's. As his overall condition continued to get weaker and weaker and with no new information it was a risk every time he was sedated to see if his body could rebound. Never before have I been so shocked and surprised as I kept learning the hard way for Jake what had to be done. I used to cry when my babies had to get the PKU test and have their little fingers and heels poked. How I learned what we all take for granted a healthy baby that gets to go home with no problems and have the gift of normalcy in life. It is hard to learn to live with this reality, I was starting to think what would happen if we did not find that normalcy. I would always think everyday things could not get worse but then somehow they always did.
We had to learn a new way of feeding Jake he would try so hard to suck but it took too much coordination and energy for his brain to organize the 36 muscles it takes to suck, breath, and swallow all at the same time. It was becoming impossible for Jake’s body to do simple instincts that all babies are born with. I learned how to pump breast milk and put into syringes with a machine to deliver his food through his nose by a tube. I would do anything to keep him healthy and growing. We had to change syringes every 2 hours 24 hours a day so Joel would help at night taking shifts so one of us could have 3 hours of sleep at a time. We worked to require all of the special equipment at home that they had at the hospital like deep suctioning machine, oxygen and feeding machines. I would not give up and still tried to give him a bottle to see if he could remember how, we tried the Haberman Feeding System (now renamed Special Needs Feeder) and even went to IFA and bought a baby animal nipple to suck that should have been easier for him to use, but nothing seemed to work.
Jake ended up in the hospital again his health declining trying to just do the most basic human functions were seeming to be impossible for Jake. I will always remember the day that Grandma and Grandpa came to visit Jake, right when you open the door to Jake's room it is clear how fragile the life of this little boy is getting. Your mind begins to wander of what is going to happen, how is this going to turn out? We have always held out for the best and had hope. But the tubes and crying and doctors and tests bring you into a new reality that we never knew of. Joel started to fill in the new information to grandpa as they walked out to the window tears streaming down both their faces as they talked about the trailers in the parking lot, anything to ease the pain of what reality we were being faced with.
Jake made it through yet another hospital stay and again we returned home to our crazy schedule, but I would have rather been at home as a whole family then have Jake and I in the hospital. I did not want any moment go by that I could be holding him or just to be right by his side.
Regardless of our best efforts in doing all we could to keep Jake healthy, he found himself in the hospital again. This time it was decided that Jake needed to have a sleep study done. Even though we were all ready in the hospital he needed to go to the RTU (rapid treatment unit) where this test was done and took overnight to complete. I thought how bad could it be it is a sleep study that sounds harmless oh how wrong I was!
I marvel at how in our darkest hours our Heavenly Father blesses us with what we need to endure all we must. I believe there are angels among us in spirit and in person that night Jake had six angels with him to help us. Three that as a chosen career serve children daily with love and kindness and three spirits that were sent to help when we had done all we could and it was not enough. I know there are angels among us! Jake woke up only minutes after the required number of hours they needed for the test results. It was a miracle- but he did it!
This was our new family’s theme song, everyone memorized it.
Angels Among Us
I was walking home from school on a cold winter's day
Took a shortcut through the woods and I lost my way
It was getting late and I was scared and alone
Then a kind old man took my hand and led me home
Mama couldn't see him, but he was standing there
And I knew in my heart, he was the answer to my prayers
Oh I believe there are angels among us
Sent down to us from somewhere up above
They come to you and me in our darkest hours
To show us how to live
To teach us how to give
To guide us with a light of love
When life dealt troubled times and had me down on my knees
There's always been someone there to come along and comfort me
A kind word from a stranger to lend a helping hand
A phone call from a friend just to say I understand
Ain't it kind of funny at the dark end of the road
Someone lights the way with just a single ray of hope
Oh I believe there are angels among us
Sent down to us from somewhere up above
They come to you and me in our darkest hours
To show us how to live
To teach us how to give
To guide us with a light of love
They wear so many faces
Show up in the strangest places
Grace us with their mercy
In our time of need
Oh I believe there are angels among us
Sent down to us from somewhere up above
They come to you and me in our darkest hours
To show us how to live
To teach us how to give
To guide us with a light of love
There have always been so many angels among us, a kind friend who called at the just the right time, my sisters who always sense I am in need and show up at my doorstep with just what I needed, sometimes even before I know I need it. Loving grandparents and parents who are constantly there and suffering themselves from watching not only their grandchild suffer but their child, how they wish they could remove this trial from us both. Being part of a ward family that gives non-stop service with meals and any help possible.
Yes, I have been blessed more than most to have had wonderful experiences in my life that strengthen me and give me the boost I need every day to continue on. I have had heavenly messengers sent to me countless times, I might not have always been in the right frame of mind to hear them but oh how I have felt them and been loved and comforted when it was not possible for earthly hands to help.
Yes I know for a surety that there are angels on earth and angels sent to earth to help us through our troubles times from our loving Heavenly Father.
*Chapter 3* - "The Promise"
Jake made it through that night and eventually stabilized enough that we decided to go home. Jake did so much better at home in his comfort zone surrounded by family that loved and adored him. He seemed to know when he was home with his siblings and safe from pokes and tests. We enjoyed every day we have to spend together, and learned not take anything for granted. Being able to have a family meal together, giving everyone baths and tuck them into bed to be able and sit and watch a video and not having to live on cafeteria food. We were always so grateful for the time we were able to be home together.
Unfortunately life always found us and reality would hit us hard. Jake started deteriorating again crying 14 hours a day. He would cry so hard his body went stiff as a board and then eventually due to pain and screaming he would arch into a U shape where his head would reach his feet. We talked to everyone we could, tried everything possible and still no results. Finally when talking to one of our doctors it was recommended we try a new medication out of desperation we agreed. It was wonderful! We thought we had received a miracle! Jake seemed to calm down and not be so tight I could hold him as a normal little baby he snuggled right into me. For the next 48 hours we thought we solved Jake’s problem and everything was great! Oh how wrong we were- although we loved the 48 hours we had and our hearts burned with joy because for a moment we felt what it was like to be normal and had hope that with one little pill everything could be as it should. Because Jake was doing better Joel took the other kids out for some fun while I stayed home with Jake, when I realized he was not doing well and needed immediate attention I called Joel to come home quickly I knew Jake had to be taken to the hospital. As I hung up the phone I threw it smashing the phone on the wall wondering what now! As Joel returned home and the grandparents came to once again take care of my kids as we rushed to the hospital the freeway parted and miraculously the cars left our path we made it in record time. Jake was immediately admitted to the PICU (Primary’s Intensive Care Unit) and being almost 3 months old could no longer breathe.
As he was rushed in and swarmed by doctors that tried to push me away I said no! I never leave Jake what ever is to happen I will be by his side. He was intubated and put on a ventilator that was breathing for him and given drugs to knock him out and not move. This was most difficult of all because for the first time I could not scoop him up and hold him or rock him to sleep because of the tubing going down his throat to automatically operate his lungs. He was hooked up to countless monitors that gave the doctors the information they needed to keep him alive. His body was so weak and fragile, there were so many doctors none of them sure what was wrong or how to proceed. So we started treating his symptoms to try and keep his basic body functions working.
At this time there was little hope given to us, “He will probably not have the strength to come off the ventilator and breath on his own ever again, he was not even expected to make it out of the hospital alive.” What piercing words those were, we had just had a glimpse of how happy life can be and so hopeful for the future. We wanted so badly to have our 4 children and just be able to raise them. I still never left Jake’s side and became very proactive for Jake I needed to sense what he needed and somehow communicate for him, I was the only voice he had. I made sure only the necessary tests were done on him, I tried to only have one blood draw a day instead of whenever a different test that required blood was ordered. His little veins became scarred, bruised and collapsed from so many pokes; he had no fingers left that did not have band aids on them from pokes and scars. Looking at his little body bruised, bleeding, poked, not able to breathe or swallow.
I changed forever at that moment as something inside me stirred and my blood began to boil as I was driven to new lengths and had no fear of offending anyone and I was given a strength to protect my son for as long as I would have him. I became known as the “psycho anal mom that was next to Jake’s name on his medical chart” watch out for her. I demanded to know how and why things were being done instead of just watching I learned how to do all of the procedures that Jake needed for survival. I would watch the nurses and ask each one of them to teach me everything they were doing then I would do it my self to Jake. I had such a desire to soften all that Jake had to endure. The least I could do was try to protect him, try to make it easier for him to bear and to do everything for him softer and gentler. If he had to go through all of this I could hold his hand and give him constant love and support to always make sure he knows I am always right next to him. One of these times as I was holding his hand and he was squeezing my finger tears were rolling out of his eyes his mouth was opening and closing he was screaming but you could not hear any sound because of the tubing down his throat attached to his breathing machine.
My heart and soul ached so much how painful it is to have to sit by and watch your child suffer, how many times I would pray and beg Heavenly Father to please heal him and take me instead, how I would have done anything, anything at all to try and trade him places. As I looked inside his eyes and was trying to truly sense what it was Jake wanted, I asked him what should I do? How should we proceed? I know you are suffering Jake please let me know how to make these awful decisions for you. As our spirits connected once again, as we were looking into each others eyes, I know Jake was trying to communicate with me. I made a promise to Jake that if he could get enough strength I would take him off this ventilator and I would never allow him to be ventilated again. I felt his answer so strong he did not want to be here all that he was going through was more for me rather than for him. Even if I lost him I promised right then and there life would be better. Somehow he told me “mom give me a chance,” we did take the leap of a faith and had the machine turned off and Jake began to breathe on his own.
Although it was a huge success there were still many obstacles ahead the hardest decisions were yet to come for the next few days we were trying to decide what to do for Jake. We have learned lessons that everything you do has its positive's and negative's affects to the body, you might fix one thing and two things get worse. We broke it down that Jake has to breathe, his heart has to beat and his body needs nourishment. If we could focus on these things try to get him stronger we would go from there. With that in mind Jake went in for his first surgery and had a little flap of skin removed to try and open up his airways (tracheomalacia) it seemed to work for the time and we were grateful for his kind surgeons who worked so gently on Jake. We were successful in getting an MRI that showed Jake’s brain did not have the myelin sheaths that it should to properly communicate with the rest of his body so his brain was extremely delayed for where he should be. It was quite the controversy of opinions on having a trachea placed, technically to make sure he could breath he needed it, but on the other side was it medically correct to prolong his life. For us it was incredibly difficult to watch our child struggling for each breath and you want to just take big deep breaths for him. But I remembered my promise and wanted his future to remain open with options and not be dependent on a machine. So the procedure was cancelled, some doctors thought I was crazy and maybe I was but I no longer cared what people thought only what would be best for Jake and what would he want? Joel and I celebrated our 10 year wedding anniversary in the hospital with Jake; we had planned on a big fancy trip and realized how quickly your life, the plans you make and prepare for have to be changed. Also we realized how most of that “stuff” doesn’t really matter. We had our anniversary dinner in the cafeteria and exchanged new watches which symbolized the roundness of life eternal and our love for one another to make it through difficult times in our relationship. We were so thankful to be able and hold our baby boy that night and knew the gift he was to us, how special he is and how grateful we were to give him all we could. The gift he has given us by fighting for his life and we had another 24 hours to be with him. Jake defied all the odds and was determined after he was nursed back to health we decided to take him home.
Jake was a miracle he was never expected to make it through these obstacles and here we were walking out the front door and taking him home. We know without a doubt how very special Jake is we are uncertain about his future and how we will continue to care for him but we are more determined than ever to make sure he wants for nothing. We wondered how much more his little body could take. We know for certain Jake is a very special son of our Heavenly Father who he has entrusted us to see to his needs. How it would change all of our lives forever!
We were not even sure what the next 24 hours would bring how unstable we all felt, but strengthened to continue on and somehow make each day count by being so involved with his entire family. I also promised Jake that if he could make it through the coming up fall and winter when the spring came we would go to the beach and Disneyland. What a long shot it was as we were constantly reminded how fragile he was and that any sniffle could mean the end. But Jake had other plans -
Heaven’s Special Child
A meeting was held quite far from earth
“It’s time again for another birth”
Said the angels to the Lord above
“This special child will need much love
His Progress may seem very slow
Accomplishments he may not show
And he’ll require extra care
From the folks he meets down there
He may not run or laugh or play
His thoughts might seem quite far away
In many ways he won’t adapt
And he’ll be known as handicapped
So let’s be careful where he’s sent
We want his life to be content
Please Lord, find the parents who
Will do a special job for you
They will not realize right away
The leading role they’re asked to play
But with a child sent from above
Comes stronger Faith and richer Love
And soon they’ll know the privilege given
In caring for this gift from Heaven
Their precious charge, so meek and mild
Is Heaven’s Very Special Child”
Unfortunately life always found us and reality would hit us hard. Jake started deteriorating again crying 14 hours a day. He would cry so hard his body went stiff as a board and then eventually due to pain and screaming he would arch into a U shape where his head would reach his feet. We talked to everyone we could, tried everything possible and still no results. Finally when talking to one of our doctors it was recommended we try a new medication out of desperation we agreed. It was wonderful! We thought we had received a miracle! Jake seemed to calm down and not be so tight I could hold him as a normal little baby he snuggled right into me. For the next 48 hours we thought we solved Jake’s problem and everything was great! Oh how wrong we were- although we loved the 48 hours we had and our hearts burned with joy because for a moment we felt what it was like to be normal and had hope that with one little pill everything could be as it should. Because Jake was doing better Joel took the other kids out for some fun while I stayed home with Jake, when I realized he was not doing well and needed immediate attention I called Joel to come home quickly I knew Jake had to be taken to the hospital. As I hung up the phone I threw it smashing the phone on the wall wondering what now! As Joel returned home and the grandparents came to once again take care of my kids as we rushed to the hospital the freeway parted and miraculously the cars left our path we made it in record time. Jake was immediately admitted to the PICU (Primary’s Intensive Care Unit) and being almost 3 months old could no longer breathe.
As he was rushed in and swarmed by doctors that tried to push me away I said no! I never leave Jake what ever is to happen I will be by his side. He was intubated and put on a ventilator that was breathing for him and given drugs to knock him out and not move. This was most difficult of all because for the first time I could not scoop him up and hold him or rock him to sleep because of the tubing going down his throat to automatically operate his lungs. He was hooked up to countless monitors that gave the doctors the information they needed to keep him alive. His body was so weak and fragile, there were so many doctors none of them sure what was wrong or how to proceed. So we started treating his symptoms to try and keep his basic body functions working.
We were not even sure what the next 24 hours would bring how unstable we all felt, but strengthened to continue on and somehow make each day count by being so involved with his entire family. I also promised Jake that if he could make it through the coming up fall and winter when the spring came we would go to the beach and Disneyland. What a long shot it was as we were constantly reminded how fragile he was and that any sniffle could mean the end. But Jake had other plans -
A meeting was held quite far from earth
“It’s time again for another birth”
Said the angels to the Lord above
“This special child will need much love
His Progress may seem very slow
Accomplishments he may not show
And he’ll require extra care
From the folks he meets down there
He may not run or laugh or play
His thoughts might seem quite far away
In many ways he won’t adapt
And he’ll be known as handicapped
So let’s be careful where he’s sent
We want his life to be content
Please Lord, find the parents who
Will do a special job for you
They will not realize right away
The leading role they’re asked to play
But with a child sent from above
Comes stronger Faith and richer Love
And soon they’ll know the privilege given
In caring for this gift from Heaven
Their precious charge, so meek and mild
Is Heaven’s Very Special Child”
*Chapter 4* - "What Now?"
I knew we still had a huge obstacle in front of us; yes Jake made it over that hump but what about the next one. We were going into winter which brings along with it sickness and other siblings bringing home a simple runny nose could mean another hospital stay for Jake. We were warned about the dreaded illness RSV and told for sure it would be another issue that could take his life.
The doctor appointments resumed mostly to just keep Jake stable and treat his symptoms. Many new medications were tried as we were always looking for that balance of not being overmedicated but making sure Jake was comfortable- it is a very fine line. There had to be constant hand washing, changing your clothes right when you enter the door. We all had to change our lifestyle by staying in more to try and keep everyone healthy. There were constant battles with insurance and what they felt should or should not be covered. The battle to qualify for RSV shots that cost about $3000 for each shot that could truly save his life was never ending. With all the medical expenses Jake needed we would try everything and anything we could. I would keep my promise to Jake I felt such a responsibility to keep him healthy, and make sure he made it to Disneyland and the beach.
Life at home began with a sign on the front door that said so sorry due to Jake’s fragile health no visitors if you or anyone you know has had a cold recently you cannot enter. This was difficult for Jake’s siblings because they could not play very much; friends could not come over just in case. The whole dynamics of the family needed to change I started going to the grocery store at 10pm when everyone was asleep to avoid the crowds and try to decrease the chance of bringing home germs. Joel had to travel for his work and somehow I still had to be some what of a wife and mother to my other 3 children and a nurse to my son. I would become so emotionally overwhelmed and exhausted but would fight everyday to go on. We held on to that goal if you can make it through the winter you would probably have a spring and summer. We were blessed with an incredible extended family that would always be there to help. Tyler would wake up and go to Aunt Stephanie’s house almost every day, another example that the Lord knows what you need before you do- Tyler and his cousin Josh are only 3 weeks apart in age. My mom and dad were always there being able to help in anyway possible. Our family became the service project of my extended family. I know I needed to have help but I just wanted to be able and do it on my own. I had to learn how to accept so much service (which was very hard for me) in my families behalf- I would have to fight the feelings of guilt that I was taking more than I could give back. I was truly being humbled by our Heavenly Father for the service being rendered to my family.
I would find myself with any spare moments using the internet in researching and reading books to find my own diagnosis for Jake. I could not stop thinking there has to be something more I can do, some reason why this happened. I was positive I could find a cure because I knew Jake better than the doctors there had to be something they had overlooked. I felt such an urgency that “I have to fix it!” I can’t lose my son to this-if I can find out what’s wrong I was sure I could find a way to fix it. We still kept going to all of Jake’s appointments hoping and wondering each time if today was the day- we would have good news and find some any information that would lead us to fixing Jake’s problems. How frustrating it was to have every test come back and say he is normal. On paper there was nothing wrong with Jake he should be just fine – but something is clearly wrong. How is this possible to not know what is wrong? We resorted to trying things on our own. We needed to find a new way to try and feed Jake. I never wanted him to be hungry I researched and tried anything I could get my hands on, different kinds of tubes and syringes to just drop milk into his mouth. Jake was so patient and tried his best at each of our attempts. Jake and the family had been doing a wonderful job working together and following all of the strict medical needs Jake had. We decided to have a night off and go to the Mayan to celebrate Tyler's 2nd Birthday.
The kids had so much fun they could order anything they wanted and loved seeing all of the new diving shows and for the first time the “whole” family was together having a great time. It was such an amazing night and how grateful we were to do something that all most all families take for granted. How that day meant so much more to us and we wanted to be able to make these special nights happen more in our lives. There became an urgency that everything had to be made special because you never knew if this was going to be the first and the last. Would he could he make it another day or another year?
His first halloween was great he was dressed up as Tigger for a few pictures and was glad when his siblings brought home the stash of candy they had collected!
Jake made it to his first Thanksgiving we couldn't go to the church with all of our relatives and celebrate like we usually did, but we had so much to be thankful for that day. It was great as we stayed home and cooked all day long and enjoyed a great feast with a few close family members. I remember holding Jake in one arm and cooking and stirring for hours with the other arm. I would not have changed a thing. We truly gave thanks to a loving Heavenly Father who was blessing our son. Jake was able to cry a little less, I felt we were able to comfort him more which is an indescribable feeling and need for a mother to be able and calm her child. We still had a lot of work and sleepless nights but it was all worth it. Every member of our family was so attached to and loved Jake more and more each day. We started decorating for the Christmas season and soon to celebrate Jake's 1st Christmas, his stocking was added to the mantel like his brother and sisters. As we shopped for gifts for each other it was special for each one of us to find something special for Jake that he would love. We soon found that all of the regular toys in the stores wouldn’t work for Jake because he couldn’t do any of the things that normal kids 7 months old could do. He couldn’t sit up or even hold his head he couldn’t really reach for anything or move his arms and legs where he wanted them to go. He didn’t make a lot of sounds if he wasn’t crying and since he left the hospital in August he could no longer track an object or see with his eyes. We didn’t focus on these cant’s we only focused on the wonderful things he could do. He loved to be held and snuggled right into your bosom and never moved he was the best buddy to watch a movie with and snuggle with under a warm blanket. He loved music and vibration that he could feel and we all loved to give him massages and keep him warm. He loved movement and swinging. But truly just being able to love him and be apart of his life to feel his strong spirit that grew with light each day was more than enough for all of us. We did a lot of our normal traditions, but in trying to keep everyone germ free we made some new traditions as well. Making sugar cookies together and decorating them; participating in as many family gatherings as we could, and just enjoying the time together more than ever. One thing we decided we would do no matter what was go downtown to see the lights and visit Temple Square. You could barely see Jake by the time we bundled him up taped hand warmers to his body for heat- but I know he loved walking the grounds with all of the beauty and being full of the Christmas Spirit and I believed even though they said Jake couldn't see he could see the
lights of Christmas and feel the love in the air at this special time of year.
Well Jake learned very young and early of another Christmas tradition from his siblings as they were all so excited Christmas Eve they knew they could never fall to sleep so they all slept in Janessa’s bed waiting for Santa to arrive. I think by 5:00am we could contain them no more as they woke up Jake because the youngest gets to start the line downstairs to see what Santa has brought for them this year! It was a beautiful Christmas morning with a light snow falling outside and so many giggles, screams of joy and excitement happening inside. Jake could sense the excitement and feel the love as each sibling helped him open their gifts – something we enjoyed every Christmas Jake was with us. Somehow Jake would always give the best gifts of all- the pure love of Jesus Christ, that Christmas and every Christmas to come Jake was full of light and love to share, what a wonderful magical time of year!
The winter was filled with ups and downs but we took each day as it came and plugged through. There were a lot of good days mingled in with what had to be done each day. We started working extra hard on focusing on things the whole family could do and enjoy. Sledding became one of our favorite past times in the winter we could bundle everyone up make some extra chocolaty hot chocolate and find a great hill. Jake loved the sliding motion and feeling the wind in his face. There were several times when he was on oxygen and we just strapped it down with him and away we went. All of the kids enjoyed our days out sledding, making a snowman and of course ganging up on dad for a snow ball fight. Jake's team always won!
More and more we were delighted and had great joy in what we could do- not what we couldn’t do.
I have a sweet friend who gave me this story that explains how we accepted our new life:
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian.
It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place,
full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
The doctor appointments resumed mostly to just keep Jake stable and treat his symptoms. Many new medications were tried as we were always looking for that balance of not being overmedicated but making sure Jake was comfortable- it is a very fine line. There had to be constant hand washing, changing your clothes right when you enter the door. We all had to change our lifestyle by staying in more to try and keep everyone healthy. There were constant battles with insurance and what they felt should or should not be covered. The battle to qualify for RSV shots that cost about $3000 for each shot that could truly save his life was never ending. With all the medical expenses Jake needed we would try everything and anything we could. I would keep my promise to Jake I felt such a responsibility to keep him healthy, and make sure he made it to Disneyland and the beach.
Life at home began with a sign on the front door that said so sorry due to Jake’s fragile health no visitors if you or anyone you know has had a cold recently you cannot enter. This was difficult for Jake’s siblings because they could not play very much; friends could not come over just in case. The whole dynamics of the family needed to change I started going to the grocery store at 10pm when everyone was asleep to avoid the crowds and try to decrease the chance of bringing home germs. Joel had to travel for his work and somehow I still had to be some what of a wife and mother to my other 3 children and a nurse to my son. I would become so emotionally overwhelmed and exhausted but would fight everyday to go on. We held on to that goal if you can make it through the winter you would probably have a spring and summer. We were blessed with an incredible extended family that would always be there to help. Tyler would wake up and go to Aunt Stephanie’s house almost every day, another example that the Lord knows what you need before you do- Tyler and his cousin Josh are only 3 weeks apart in age. My mom and dad were always there being able to help in anyway possible. Our family became the service project of my extended family. I know I needed to have help but I just wanted to be able and do it on my own. I had to learn how to accept so much service (which was very hard for me) in my families behalf- I would have to fight the feelings of guilt that I was taking more than I could give back. I was truly being humbled by our Heavenly Father for the service being rendered to my family.
I would find myself with any spare moments using the internet in researching and reading books to find my own diagnosis for Jake. I could not stop thinking there has to be something more I can do, some reason why this happened. I was positive I could find a cure because I knew Jake better than the doctors there had to be something they had overlooked. I felt such an urgency that “I have to fix it!” I can’t lose my son to this-if I can find out what’s wrong I was sure I could find a way to fix it. We still kept going to all of Jake’s appointments hoping and wondering each time if today was the day- we would have good news and find some any information that would lead us to fixing Jake’s problems. How frustrating it was to have every test come back and say he is normal. On paper there was nothing wrong with Jake he should be just fine – but something is clearly wrong. How is this possible to not know what is wrong? We resorted to trying things on our own. We needed to find a new way to try and feed Jake. I never wanted him to be hungry I researched and tried anything I could get my hands on, different kinds of tubes and syringes to just drop milk into his mouth. Jake was so patient and tried his best at each of our attempts. Jake and the family had been doing a wonderful job working together and following all of the strict medical needs Jake had. We decided to have a night off and go to the Mayan to celebrate Tyler's 2nd Birthday.
His first halloween was great he was dressed up as Tigger for a few pictures and was glad when his siblings brought home the stash of candy they had collected!
lights of Christmas and feel the love in the air at this special time of year.
I have a sweet friend who gave me this story that explains how we accepted our new life:
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian.
It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place,
full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
*Chapter 5* - "He Made It!"
We did learn how to adapt and change our family’s day to day activities. We did learn to have a new view on life and where we were, that if we had just stayed so sad from our circumstances or our sorrow that we would have missed out on so many wonderful moments and personally witnessed the many little miracles we were blessed with.
In the spring of 2003 we thought our world was collapsing again, it surprises me how many times you think you have hit rock bottom and yet when you get to the bottom you can get hit again until eventually you find yourself in a dark tunnel with blackness on both sides of you and your not sure which way to go or even if there is a way out. The task is daunting and it takes so much strength that you don’t think you have enough drive left either emotionally and physically to pull yourself up. Somehow I had to start by just taking tiny steps with enough faith to try and make it back to the light. This is where we found ourselves in March. The only way out of this dark tunnel when you are unable to see any light at either end is the gospel of Jesus Christ. We had a loving ward family with leadership that were always there to help even when there was nothing that anybody could do. We had many visits from a loving Bishop and High Councilman that were in tune with the Spirit and knew what we needed before we even knew ourselves. On one of these nights we had just been counseled to pray, attend the temple, keep having faith, increase our scripture study, fasting, and to recognize the blessings from our Heavenly Father. To remember our spirits are eternal and to keep a journal of our experiences. Although we have known all of these things all of our lives sometimes you need to hear it again and again, when life is the busiest and you are truly physically and emotionally exhausted and every ounce of strength you have you have put into the demands that have been placed upon your shoulders. I know and testify that you will have added strength and your burdens will be made lighter if you do these things and keep His commandments.
It was in this spirit that our Stake Presidency was called in to help our family on March 30, 2003 we met with 3 incredible men. They were updated on the severity of the situation regarding Jake and our family for over an hour and a half we talked about doing all we could. We loved our son more than life itself and we did not want to loose him! What were we missing in our lives, did we not have enough faith, was Jake suffering because of our shortcomings? What did we lack and why could we not have this miracle? There answer was simple to use the power of the Priesthood and have the humility and strength that whatever the will of the Lord was to follow it. We were each given very powerful blessing that came down to this: Joel be the spiritual leader of the home, keep doing all of the above mentioned items. That the Lord is involved in all of our lives and Joel was chosen to be in this situation with Jake. Jacque you need to have peace allow the Lord to comfort you and know that you are suppose to be Jake's mom, have confidence in knowing the decisions you have to make for Jake and feel peace in accepting Heavenly Fathers will. Do whatever it takes to know the will of the Lord and then just do it! Jake was blessed that he would be well in mind, intellect, body, his organs, but above all Gods will be done. Remember, remember we are to know Heavenly Father and Jesus Christ better and make them apart of our lives! After our blessings we asked why not us? Why can’t we ask for our own miracle for our son? Our Stake President agreed and recommended to hold a stake wide fast for Jake on Easter Sunday that he might be healed but above all God’s will be done. This is the letter that went out to each ward to announce the fast:
April 13, 2003
Dear Brothers and Sisters of the South Mountain Stake,
In a recent visit to the LeRoy family’s home in the 14th Ward, I felt strongly that it would be very appropriate to combine the Faith and Prayers of the good people of this Stake in behalf of the LeRoy family and their infant son Jake who is very ill. I would like to request a special Stake-wide fast to be held during the period of April 19th or April 20th.
I would suggest that we pray that the holy comforter would rest heavily upon their household and particularly, bring peace unto these wonderful parents and their little child. I would also pray that the burdens of ill health would be lifted from this infant boy.
Brothers and Sisters, there is tremendous power in uniting in fasting and prayer. I am grateful for your willingness to sacrifice for the aid of others, and bear testimony that through your righteousness and diligence, the LeRoy family will not only be comforted and blessed but the Spirit of the Lord will touch all of our hearts for good.
Sincerely,
President Rodolfo C. Franco
South Mountain Stake
I want to share an entry from my journal on April 11, 2003: Well much has happened since March 30. Joel and I have been reading our scriptures and books on faith, we have been praying every night together and great things have happened to us. Our faith and hope have increased. I feel closer to Heavenly Father and Jesus Christ than ever before. We feel we are putting all we have into this. It seems harder to have total unconditional faith that Jake can be totally healed than just to say this is Gods will for him. We hope for this miracle only on Gods terms. Last night when we were getting Jake ready for his bath he lifted both legs about 1 inch off his table and had movement in the water in his bath. Jake has been happy and smiling and laughing I think his vision is doing a little better also. All of these things could be signs of great things to come. Last night I asked Heavenly Father if these were signs and I had the biggest burning I have felt for a long time. Right now we are on our way to Ogden for an eye conference to help Jake. The whole family is involved and doing better.
April 19, 2003: We are driving home from our spring break weekend with family and friends. The kids had a great time swimming and going out to dinner playing with other kids- it was a great break. Jake was great!!! He has been kicking, lifting his arms, giggling. He has been so fun and cute, he wore his new hat and sunglasses. The whole family had fun we smiled and laughed it was great medicine for everyone. At night Joel and I continued reading Lectures of Faith by Joseph Smith and our scriptures. We left early to get home and prepare for our fast and prayers early. We are so hopeful that great things are going to happen tomorrow. The scriptures tell us so. We are preparing for the biggest most important day tomorrow –all is GREAT!!!
April 27, 2003: Last Sunday was the most incredible day. We had the Stake wide fast with so many members fasting and praying for our family and Jake. We met at our church as a family Joel instructed Bishop Free to give an opening prayer followed by testimonies given by the Bishop, Joel, Jacque, Janie, Clayne, BettlyLou, Blaine and Pres. Franco. At this time the spirit was so strong in the room there were many tears Joel asked Jacque to give a prayer we did so on bended knee then Clayne anointed Jake and Joel gave a wonderful blessing which he felt from the Lord that Jake would be healed- and he would be OK! We finished with such happiness and joy a true miracle had taken place. We all asked Heavenly Father with faith and he answered. Janessa and Monique were so touched they had both fasted for 24 hours and just sobbed through the entire meeting. They were touched with the spirit just as we were and felt the burning. Within 2 days we immediately saw improvements Jake was able to move his legs more and move his arms and hold his head a little. He was able to locate an object and that very evening he was able to drink 2 oz from his bottle. We all just sat and sobbed. What a huge miracle everything worked we asked the Lord with all the faith we could muster (muster seed) and he answered. We are so thankful to our Heavenly Father who answers prayers. He promised he would heal Jake and we know he will! It is going to take continued faith on our side and much patience. Our whole outlooks have changed. Instead of wondering everyday if this is the Jake is going we now wake up excited to see what new things Jake will be able to do that day. They shared these thoughts today in Stake Conference we wanted everyone to know that miracles really still exist and that fasting and prayers are heard by our Heavenly Father. We want to give thanks for the many people who have prayed and fasted on our behalf and still continue too do so. We had many gifts dropped off at our home. How do we ever repay what we have been given? We just visited our grandparents Bingham’s and Poulsen's, oh how we love them they were so thankful to be able to see Jake, it was so touching. We have been so blessed with a wonderful family all the kids had a great time at the farm!
There is no question that our entire family was “comforted” and that “ill health” was getting better for not only Jake but for all of us. We had all been privileged to take part and witness personally that miracles are still on the earth today and by the power of the Priesthood our Heavenly Father hears and answers our prayers!
In this spirit we prepared for the biggest event of the year Jake’s 1st Birthday! May 9, 2003 a day that has been hoped for but many times not sure if it would ever come. But it did come and what a great day it was! For Jake’s 1st birthday we decided to make it a sensory party for the entire family and to have everyone experience first hand what Jake’s days are like. We started by not having your sense of sight- to experience this everyone was blindfolded and had to go through an obstacle course having to feel your way through. Next, still being blindfolded we tried our sense of taste- having to taste food and guess what it was the fun was watching the face expressions to see if it was liked or not. Every day we try to help Jake learn to swallow and try to develop his coordination of swallowing by trying new foods and every day he allows us to give him new tastes and tries so hard to swallow. Still blindfolded we tried our sense of smell; everyone had to guess a smell some where yummy some were not. For our sense of touch- everyone did a great job by making “touching books” to give to Jake. They were so colorful and fun everyone did a great job, for months Jake enjoyed having us help him by touching all of the shapes and textures that were in each book. The sense of hearing and movement- are Jake's best senses he loves hearing music and loves being moved around feeling the motion of rocking and swaying.
Once again Jake gave us all the better gift by teaching all of us how grateful we are for our senses and the miracle of having a body that can see, taste, smell, touch, hear and move all of the things Jake cannot do for himself. He taught us of a loving Heavenly Father that wants us to find joy in the entire world around us, he prepared every detail for us to enjoy as we are away from him during this time. We finished up by opening wonderful gifts that had so thoughtfully been given to Jake. Everyone, even Jake, enjoyed the angel cake made by grandma which is symbolic of the angel we have been blessed with to be here with us each and every day. Here is the perfect ending to a perfect day!! Happy 1st Birthday Jake WE LOVE YOU!!!
All for one and one for all
My Brother and My Friend
What fun we have
The time we share
Brothers till the end.
Jake 1 year old!
In the spring of 2003 we thought our world was collapsing again, it surprises me how many times you think you have hit rock bottom and yet when you get to the bottom you can get hit again until eventually you find yourself in a dark tunnel with blackness on both sides of you and your not sure which way to go or even if there is a way out. The task is daunting and it takes so much strength that you don’t think you have enough drive left either emotionally and physically to pull yourself up. Somehow I had to start by just taking tiny steps with enough faith to try and make it back to the light. This is where we found ourselves in March. The only way out of this dark tunnel when you are unable to see any light at either end is the gospel of Jesus Christ. We had a loving ward family with leadership that were always there to help even when there was nothing that anybody could do. We had many visits from a loving Bishop and High Councilman that were in tune with the Spirit and knew what we needed before we even knew ourselves. On one of these nights we had just been counseled to pray, attend the temple, keep having faith, increase our scripture study, fasting, and to recognize the blessings from our Heavenly Father. To remember our spirits are eternal and to keep a journal of our experiences. Although we have known all of these things all of our lives sometimes you need to hear it again and again, when life is the busiest and you are truly physically and emotionally exhausted and every ounce of strength you have you have put into the demands that have been placed upon your shoulders. I know and testify that you will have added strength and your burdens will be made lighter if you do these things and keep His commandments.
It was in this spirit that our Stake Presidency was called in to help our family on March 30, 2003 we met with 3 incredible men. They were updated on the severity of the situation regarding Jake and our family for over an hour and a half we talked about doing all we could. We loved our son more than life itself and we did not want to loose him! What were we missing in our lives, did we not have enough faith, was Jake suffering because of our shortcomings? What did we lack and why could we not have this miracle? There answer was simple to use the power of the Priesthood and have the humility and strength that whatever the will of the Lord was to follow it. We were each given very powerful blessing that came down to this: Joel be the spiritual leader of the home, keep doing all of the above mentioned items. That the Lord is involved in all of our lives and Joel was chosen to be in this situation with Jake. Jacque you need to have peace allow the Lord to comfort you and know that you are suppose to be Jake's mom, have confidence in knowing the decisions you have to make for Jake and feel peace in accepting Heavenly Fathers will. Do whatever it takes to know the will of the Lord and then just do it! Jake was blessed that he would be well in mind, intellect, body, his organs, but above all Gods will be done. Remember, remember we are to know Heavenly Father and Jesus Christ better and make them apart of our lives! After our blessings we asked why not us? Why can’t we ask for our own miracle for our son? Our Stake President agreed and recommended to hold a stake wide fast for Jake on Easter Sunday that he might be healed but above all God’s will be done. This is the letter that went out to each ward to announce the fast:
April 13, 2003
Dear Brothers and Sisters of the South Mountain Stake,
In a recent visit to the LeRoy family’s home in the 14th Ward, I felt strongly that it would be very appropriate to combine the Faith and Prayers of the good people of this Stake in behalf of the LeRoy family and their infant son Jake who is very ill. I would like to request a special Stake-wide fast to be held during the period of April 19th or April 20th.
I would suggest that we pray that the holy comforter would rest heavily upon their household and particularly, bring peace unto these wonderful parents and their little child. I would also pray that the burdens of ill health would be lifted from this infant boy.
Brothers and Sisters, there is tremendous power in uniting in fasting and prayer. I am grateful for your willingness to sacrifice for the aid of others, and bear testimony that through your righteousness and diligence, the LeRoy family will not only be comforted and blessed but the Spirit of the Lord will touch all of our hearts for good.
Sincerely,
President Rodolfo C. Franco
South Mountain Stake
I want to share an entry from my journal on April 11, 2003: Well much has happened since March 30. Joel and I have been reading our scriptures and books on faith, we have been praying every night together and great things have happened to us. Our faith and hope have increased. I feel closer to Heavenly Father and Jesus Christ than ever before. We feel we are putting all we have into this. It seems harder to have total unconditional faith that Jake can be totally healed than just to say this is Gods will for him. We hope for this miracle only on Gods terms. Last night when we were getting Jake ready for his bath he lifted both legs about 1 inch off his table and had movement in the water in his bath. Jake has been happy and smiling and laughing I think his vision is doing a little better also. All of these things could be signs of great things to come. Last night I asked Heavenly Father if these were signs and I had the biggest burning I have felt for a long time. Right now we are on our way to Ogden for an eye conference to help Jake. The whole family is involved and doing better.
April 19, 2003: We are driving home from our spring break weekend with family and friends. The kids had a great time swimming and going out to dinner playing with other kids- it was a great break. Jake was great!!! He has been kicking, lifting his arms, giggling. He has been so fun and cute, he wore his new hat and sunglasses. The whole family had fun we smiled and laughed it was great medicine for everyone. At night Joel and I continued reading Lectures of Faith by Joseph Smith and our scriptures. We left early to get home and prepare for our fast and prayers early. We are so hopeful that great things are going to happen tomorrow. The scriptures tell us so. We are preparing for the biggest most important day tomorrow –all is GREAT!!!
April 27, 2003: Last Sunday was the most incredible day. We had the Stake wide fast with so many members fasting and praying for our family and Jake. We met at our church as a family Joel instructed Bishop Free to give an opening prayer followed by testimonies given by the Bishop, Joel, Jacque, Janie, Clayne, BettlyLou, Blaine and Pres. Franco. At this time the spirit was so strong in the room there were many tears Joel asked Jacque to give a prayer we did so on bended knee then Clayne anointed Jake and Joel gave a wonderful blessing which he felt from the Lord that Jake would be healed- and he would be OK! We finished with such happiness and joy a true miracle had taken place. We all asked Heavenly Father with faith and he answered. Janessa and Monique were so touched they had both fasted for 24 hours and just sobbed through the entire meeting. They were touched with the spirit just as we were and felt the burning. Within 2 days we immediately saw improvements Jake was able to move his legs more and move his arms and hold his head a little. He was able to locate an object and that very evening he was able to drink 2 oz from his bottle. We all just sat and sobbed. What a huge miracle everything worked we asked the Lord with all the faith we could muster (muster seed) and he answered. We are so thankful to our Heavenly Father who answers prayers. He promised he would heal Jake and we know he will! It is going to take continued faith on our side and much patience. Our whole outlooks have changed. Instead of wondering everyday if this is the Jake is going we now wake up excited to see what new things Jake will be able to do that day. They shared these thoughts today in Stake Conference we wanted everyone to know that miracles really still exist and that fasting and prayers are heard by our Heavenly Father. We want to give thanks for the many people who have prayed and fasted on our behalf and still continue too do so. We had many gifts dropped off at our home. How do we ever repay what we have been given? We just visited our grandparents Bingham’s and Poulsen's, oh how we love them they were so thankful to be able to see Jake, it was so touching. We have been so blessed with a wonderful family all the kids had a great time at the farm!
There is no question that our entire family was “comforted” and that “ill health” was getting better for not only Jake but for all of us. We had all been privileged to take part and witness personally that miracles are still on the earth today and by the power of the Priesthood our Heavenly Father hears and answers our prayers!
In this spirit we prepared for the biggest event of the year Jake’s 1st Birthday! May 9, 2003 a day that has been hoped for but many times not sure if it would ever come. But it did come and what a great day it was! For Jake’s 1st birthday we decided to make it a sensory party for the entire family and to have everyone experience first hand what Jake’s days are like. We started by not having your sense of sight- to experience this everyone was blindfolded and had to go through an obstacle course having to feel your way through. Next, still being blindfolded we tried our sense of taste- having to taste food and guess what it was the fun was watching the face expressions to see if it was liked or not. Every day we try to help Jake learn to swallow and try to develop his coordination of swallowing by trying new foods and every day he allows us to give him new tastes and tries so hard to swallow. Still blindfolded we tried our sense of smell; everyone had to guess a smell some where yummy some were not. For our sense of touch- everyone did a great job by making “touching books” to give to Jake. They were so colorful and fun everyone did a great job, for months Jake enjoyed having us help him by touching all of the shapes and textures that were in each book. The sense of hearing and movement- are Jake's best senses he loves hearing music and loves being moved around feeling the motion of rocking and swaying.
All for one and one for all
My Brother and My Friend
What fun we have
The time we share
Brothers till the end.
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