Illusions of grandeur

As Talmage rounded the corner of my room, I heard an audible gasp. His eyes widen as his jaw dropped open, his voice grew in excitement and awe, "Aunt Jer, did Jake have you that treasure chest? Did you go on the boat? Did you get to see the Neverland Pirates? Is there gold in this treasure box? " Without waiting for a response, he quickly added, "Do you have the key? We have to open it to find the treasure inside."

I played along while smiling inside. Of course I couldn't find the key. This cute boy couldn't open up his precious found to treasure to discover it only held the treasure of old quilts handed down through the generations. This boy had found his lost treasure and spent a half a hour trying to pry it open.

Oh how I love the sweet discoveries and illusions of childhood grandeur. I love reveling in their world of innocence and imagination and dreams for the future.

I was reminded of some of my favorites from Hayden's childhood:

Ages about 3 to 6- anytime Hayden was asked where he was going to on a mission, his reply was always the same, "New York so I can baptize Spider-Man".

Age 3 to 4- Hayden didn't miss a night of praying for "Scar to repent and not kill Mufasa and be nicer to Simba." Then was absolutely devastated when Scar would continue his same behavior and kill Mufasa. He knew his prayers were answered and couldn't understand the refusal for Scar to change his behavior.

Age 6 - Hayden watched the movie Sky High, and waited and waited for his own superpowers to develop. He dreamed in wonder of whether his superpower would involve flying, speed, strength or freezing people. He practiced all and did all he could to develop his muscles to be ready for his superpowers. And he made sure to pray that he would not end up as just a sidekick. He wanted to be the hero.

 Poor Talmage, he finally gave up on breaking into the chest and finding some great treasure. Hayden came in and started to tell Talmage that it was filled with blankets and I quickly hushed him. I then sat him down and told him the stories of wanting to go on a mission to New York, praying for every Disney villian to decide to make better choices, and waiting for his own super powers to develop.

After talking to him, Hayden decided that we need to go get gold coins or something this weekend, scatter them through the "treasure chest" and then "find" the key. He realized how important it is to have childhood illusions of grandeur and awe. I'm in. Definitely on the "to do" list to create a grand adventure for Talmage.

After all, Hayden still will only play with the good guys and be the good guy. He refuses to have anything to do with the bad guy and villains winning is absolutely not an option.

Chicken Corn Chowder

The best part of winter is all the yummy soups, chowders and stews. Yummy and easy to cook in a crockpot.

My new favorite new "go to" recipe is Chicken Corn Chowder. It's easy. Both Thomas and Hayden love it. Better yet, I have taught Hayden how to make it. How much better can it get than that? All I have to do is chop a few veggies and Hayden does the rest.

1 can chicken (I used the Zaycon chicken Jodi an I canned but Costco chicken works great)
1 box chicken broth
2 can cream of potato soup
2 tbsp butter
1/3 of an Onion - chopped
2 stalks of celery chopped
Small bag of frozen corn
Bag of carrots chopped
Garlic, salt and pepper to taste
Cup of half and half

Throw everything in the crockpot minus the half and half and cook on low for about 4 hours. Ten minutes before you are ready to serve, pour in the half and half and let simmer.

Serve with biscuits or rolls and a delicious easy meal that really only takes 10 minutes to throw it all in the crockpot. Yummy!

Now to start teaching Hayden more recipes so that he can do all the cooking... any easy meals that an 11 year old can make, I will take them. 

Uncle Jake

Hayden was a lucky boy and was able to spend Saturday with his cousins. He adores Kaylee, Katelyn and Kiley and has been having withdrawals from not seeing them enough lately. He had a great time playing with the girls and all of their friends for hours. They played video games, jumped on the trampoline and played games.

Hayden had brought over 007 for the X-Box. As the girls were all doing "girl stuff", according to Hayden, so Uncle Jake decided to play 007 with him. Jake was shocked when Hayden absolutely schooled him and took him out at every turn. Jake is a fabulous uncle and dad but shows no mercy at video games and cannot stand the thought of being beat. He quickly switched games to one he was better at and whooped Hayden.

As we were picking up Hayden, Jake relayed the events to us and told us that there was absolutely NO way that he was going to stand for an 11 year old beating him at a game. He teased Hayden about coming back anytime he wanted without 007 game. Hayden beamed with excitement that Uncle Jake was making such a big deal out of his own loss to Hayden. As Jake told the story, Hayden's eyes and smile grew and widened with each embellished fact that Jake shared. Within no time, Hayden was giggling with excitement, fingers in his mouth and dancing in circles around the couch.

I smiled. I loved watching my brother tease and play with my son. I love the relationship these two have.

I posted a picture on Instagram the other day of Hayden. An immediate response came in of how much Hayden looks like his Uncle Jake when he was young. He has so many qualities of Jake. Most of all that he is a tease and loves to poke in fun. They both are always smiling. They both laugh the hardest when telling their own stories that they find funny. My boy absolutely idolizes his Uncle Jake! But then, who wouldn't. Uncle Jake loves to tease, play, tickle, play video games, and is right with them on their level, no interruptions, the time is all theirs.

Still wondering when Jake's teasing became funny and endearing to me instead of making me crazy? Funny how time changes perspective on things.

Doctor let down

Sometimes I get my hopes up for new doctors and new appointments. I am hopeful that a fresh set of eyes will bring a new perspective, new hope and although I try not to let myself, I feel a bit of anticipation at receiving real answers.

I had been highly anticipating going to a new neurologist to see his perspective on all of the issues I am facing. At least hoping he could shed some light on the seizures, the autoimmune disorder or the multiple neuropathy issues that are increasingly getting worse.

As the doctor personally came out to the waiting room to get me and I was seated across a desk from this acclaimed neurologist, hope swelled within. I felt he was going to point me in the right direction. I had faithfully done my research on this doctor. Going into a new doctor takes as much preparation and work as checking out a new company prior to an interview. I knew he wanted top three issues first, then a brief timeline of when symptoms began, how they progressed and any events that could have triggered the symptoms. I was ready. I handed him my seven pages of notes complete with medications, ordered by whom, dates, side effects and any progress noted. I listed symptoms in order of them complicating my life. I had a list from Thomas describing my seizures and passing out events in detail, head position, time unconscious, and how eyes roll when I am headed for unconsciousness. I had listed all confirmed diagnosis followed by possible diagnosis and why they were being considered. The next sheet contained a complete list of every test ran, with dates and locations. The last is a timeline, from birth of any significant illnesses, treatments, miscarriages, surgeries and onset of symptoms. I was prepared.

As I sat down, I gave my three minute synopsis. Top complaints, symptoms, onset, confirmed diagnosis and current lack of understanding within the medical field. The doctor began firing questions back and with each the answers came clearly and quickly. I have become extremely proficient in telling the short version, especially to doctors.

After five minutes in and answering his questions and confirming his summary, he apologized. I must have glanced at him funny. He said he would just "cut to the chase". He continued with, "there is no reason to send you on a wild goose chase. Running more tests, poking you, trying to figure this out. I don't know how to put this gently but..." He paused as he took a deep breath before continuing. "Your days are numbered. Your time left is short. I've seen too many people spend their last days searching for answers when time is better spent in the arms of their loved ones." Again, he stared into my eyes, I believe searching to see how much farther he should take this conversation and sum up how I was handling this news before continuing, "People do NOT live with what you have. Your illness isn't if it will take your life but when" a longer pause, "this is way beyond my skill set. This is beyond almost anyone I know. If Mayo cannot figure it out, I just don't know where to send you. I'm sorry."

I assured him that I was different and have survived against all odds, that a higher source, God, was sustaining my life while answers were trying to be found. I understood the critical nature of my health but also that I know some way, some how, I will find answers. I pleaded for him to give it a shot, just see if he looked a little deeper and had any feelings or ideas to try. He went on to express that with doctors, most things are proven. He expressed his condolences and told me he would wave the fee for the appointment. He wished me the best and again reminded me to not spend all my time searching and spend time with those I love.

As I walked out of the appointment, my mother in law looked at her watch. Shocked that my hour appointment ended in less than ten minutes.

I called Thomas and relayed the events and the words expressed by this new specialists that was supposed to have all the answers. Usually in cases like this I feel a major let down. I feel hopeless, if only for a little while. However, today, I felt hope. I was as sure of my feelings as I was of the words that had just been spoken by the doctor.

The day went on and I pondered his words. I pleaded with my Savior for direction, understanding and guidance, trying to find any clues within the appointment that could lead me to another source, another doctor, another direction or enlighten me at all regarding the words spoken. I just knew this appointment would lead to answers and felt so reassured that this was the path.

Over the next couple of days, I continued to ponder the words spoken. I prayed for guidance, understanding and pleaded I would understand what my next step was and where I should concentrate my next efforts. That reassuring peace from my Savior never left, although I wasn't sure of my next step, I knew He was still by my side.

A couple of days later while pondering and praying for answers, a feeling came over me. Doctors practice what they have been taught. Doctors piece together symptoms and complete a puzzle to a diagnosis. Once a diagnosis is made, doctors have an idea of how to fix it because of their practice and training. If I am the only living patient with this diagnosis or disease, then treatment isn't known. Doctors don't know how to fix what hasn't been discovered. I felt peace as my understanding was enlightened by the Spirit. Doctors practice what researchers have figured out. Hence the need for breast cancer research, more research conducted on autism and all the brilliant researches that take the unknown and find a cure.

Like a light bulb flipped on, the path was clear for the first time in a long while. Doctors practice medicine. Researchers are the ones that discover new cures and new treatments. I have been going about this wrong. I've been seeking help by those that treat what has already been figure out. I need to find a researcher willing to take on a new project.....me!

My new plan....find a research phd that can help me to figure this out. I need to plead with one to not only help me, but possibly, while helping me find a cure, many countless other lives are spared. So my quest continues but down an entirely new path.

I'm grateful for a loving Savior that assures me that answers will be found. Even in unlikely places when doctors are telling you that your days are numbered and to give up. And while I am searching for a research doctor, I will continue to do what I have been...loving and spending time when those beloved family members and friends that I cherish. It's good advice to express love and treasure relationships, no matter the situation.

Cupcakes for a Cure

Cupcakes for a Cure is a becoming a huge success! It is bigger than we ever anticipated. Raising more money than I ever dreamed of.

Early January, sitting in Jodi's kitchen, Jodi and I were calculating the number of cupcakes it would take to raise money just for me to get my necessary medications for January so I could live. We then calculated the number she needed to sell in order for me to get into the cardiac electrophysiologist, to see why I was struggling to breathe, turning blue and having my heart stop. We knew that it would take more money than we could ever raise to get the rest of my immune transplant. But I couldn't go there. I couldn't face the situation I was in. For a time, I questioned everything....even the real situation I was in of death if money wasn't raised quickly.

I was overwhelmed. Deciding if it was time to quit fighting. Give up the fight of my life and just let go. I couldn't find another way out. It seemed too big.

Jodi made me promise to give it time. She would try to sale cupcakes and just raise enough for my medications. I agreed. Still unsure of who would buy enough cupcakes to make a real difference in my fight for life.

While it all seemed overwhelming and impossible, I did not calculate that my Savior was the head of our team. The one that inspired Jodi to start this journey, was our precious Savior. When He leads a charge, it is always victorious.

As each order came in, I was in awe. Not only did people purchase cupcakes but they overpaid, donated from their hearts and did all they could to help. Most of these people I didn't even know yet they gave.

In less than a month, we raised money for my January and February medications, money for me to see the cardiac electrophysiologist and money for a heart monitor. In awe, I walk each day. I see the cupcakes made and bought, money generously given. I am grateful beyond words.

My Father in Heaven has provided for my needs....all of them. He has done it by the generosity and love of so many, including my sister for starting this Cupcakes for the Cure and all those people who have listened to the prompting of the Savior and have donated. Thank you. My sincere gratitude for all that has been done for me.

I promise each and every day to live to my fullest. To fight this fight to the best of my ability. To give each and everyday my all.

I am grateful.

The fight is still on. I know it will be long. I know the road ahead may seem impossible to some. But. I do not walk this path alone. My Savior is paving the way. He walks with me. He guides this fight. He leads this charge. Because of this, I will live. I am reassured that as money is required, just as The Lord is sustaining my life, He will provide me with the temporal needs to keep going.

I am His. He will protect me.

My heartfelt love and gratitude goes out to all!

I am in AWE of all the cupcakes sold. Jodi has made over a hundred dozen cupcakes. 36 dozen last weekend, about that many over the Superbowl and over 55 dozen ordered for Valentines day. Jodi has turned into a cupcake making machine.

When preparing for ingredients for this coming week, many set out to purchase ingredients. You know when you have 12 dozen eggs in the fridge and over 20 containers of cream cheese and purchasing powdered sugar in 50 pound increments that you are in the serious business of making cupcakes! My sincere gratitude to all that have made this a huge success!

Glasses

Jodi came over one day after she had Brigham at vision therapy. She wanted to try a few things on Hayden. She had me watch and told me it was just as she suspected, Hayden was not able to track with his eyes, but moved his entire head. I wondered how I had never noticed it. I had taken him for so many different vision evaluations. I was always told his vision was perfect.

Jodi hauled him in to Brigham's eye specialist. Hayden was tested and almost shed tears as the doctor explained to Hayden how hard it must be for him to read. He explained to Hayden that his eyes did not work together and made it virtually impossible for him to be able to read when his eyes saw things completely differently. He expressed to Hayden how smart he truly is. He told Hayden that he was sure that when Hayden was concentrating and trying the hardest that it came across as not paying attention. This is because of the sheer effort it took that it causes him to fidget. The doctor assured Hayden he was so smart and just needed to get his eyes fixed and all would be fine.

Vision therapy and glasses would do the trick. The doctor then had Hayden go look for glasses while he spoke with Jodi. He asked about cupcakes for a cure and connected that I was Hayden's mom. He knew that us paying for $5000 in vision therapy for nine months certainly wasn't going to happen right now. He gave Jodi a few exercises to do with Hayden each day. Jodi and Thomas and I were all shocked as Hayden makes sure we do his vision therapy exercises several times a day. He so wants to see better, read better and progress in school. I am in awe at his dedication and willingness to work hard for what he wants. I'm so proud of him.

A couple of days ago he went with Jodi to pick them up. He loved showing them off at school. His friends were great and told him how cool they were and how great he looked in them.

It's been less than a week and I am sure the novelty will wear off but boy is he ever good at wearing them. He can't believe how much clearer things are. He said that he can see clearer where one word starts and stops. Poor kid.

He's being a good sport. He is begging for vision therapy and offered to pay for it himself. We told him as soon as we can afford it, we will get him treatments. But for now, Jodi is teaching us and giving us some exercises to help. He certainly is being dedicated. I hope he continues to.

I am so thankful for this doctor. I'm grateful for his findings. Most importantly, I am grateful for how he handled the situation with my Hayden. The doctor built Hayden's self esteem and definitely got across the importance of therapy and hard work. Jodi said that Hayden did all he could to fight back tears when the doctor explained how smart Hayden is. What a great doctor to take the time to reassure him and help him to understand the obstacle that needs to be overcome. He enabled Hayden with the tools and the self confidence to succeed. What a great loving and kind man that I will always be grateful to for his kindness. Life is truly sweet.

Scouts

My boy has advanced to eleven year old scouts!

My heart cannot believe all that embodies. He is beginning the first steps of receiving merit badges and working towards earning his Eagle Scout award. He is taking steps towards independence, camp outs, scout camps, time away from his mom and hard work. He will learn skills necessary to survive in the wilderness, gain survival skills and learn the sweet thrill of accomplishment when achieving a hard earned goal.

Each day that he awakes he goes out in the world and learns to become more independent and more capable of achieving his own goals. He takes steps away from me and comes closer to the young man that The Lord needs him to be so he can serve an honorable and faithful mission.

He has spent eleven years in my arms, safe and secure in our home, close enough that I can protect him, cuddle him if hurt and give him advice for each struggle. I'm now having to learn to let him find the answers, not just point the way or tell him what he should do, but its time to teach him where to go to find the answers himself.

I've always tried to teach him that his Father in Heaven was there for him, anytime, any place and any where. I've taught that his Father in Heaven can go where I can't. He can walk with Hayden at school, at friends houses and wherever he may find himself. But I am now trying to help him learn to turn in prayer and ask for guidance to all situations he finds himself in. Not just to pray and ask but how to listen and be still enough to really hear. I'm trying to explain how to seek for answers. How to really earnestly search and seek out the Lord's will not just to casually walk the easiest path ahead.

I marvel at the abilities, strength, determination and dedication that Hayden already has when wanting to follow our Savior. As I teach him, my heart strings sometimes ache as I realize that I must now really teach him how to let go of me and cling tighter to our Savior. I constantly assure him that I am right there to catch him if he falls or needs steadying but he needs to learn to depend more on the Savior and less on me.

I realize that my main job as his mother is to teach him to follow the Savior, walk the straight and narrow path clinging to the truth and help him develop a deep and everlasting relationship with his older brother, Jesus Christ. I know this is what is best for him. I know it was what I was born to do. Yet, a part of my heart wants to keep him my little boy forever. The one that believes that his mom has all the answers, can fix any problem and will always be right next to him.

As I watched him walk out the door, all dressed in his scouting uniform, my mind rushed ahead to the day when he will wear a brand new suit. He will take his luggage, his scriptures, his journal armed with an assurance that God lives, loves him and a desire above all else to serve the Savior. With tears in my eyes, I will hug him, reassure him and let him know how very proud I am of him. Just like I did this day. And when he is out of sight, beyond the distance to hear my cry, the tears will flow freely again. I will rejoice in his goodness, his righteous desires, his testimony and love. But I will also miss my little boy and how much I have grown to depend on him and his precious love.

Luckily for me, I still have another seven years to teach him, love him and learn to balance being here and letting him grow up.

As I realized the significance of this new step, I certainly held him tight when he returned home from his scout clinic. I intently listened to each word. I studied each expression and memorized each sweet feature of his face. Yes. This boy is still mine. But I know all too well that he is just on loan to me and he is truly our Father in Heaven's son. Not just any son but one filled with righteousness and hope and love and compassion and integrity.

I silently vowed to not let a day go by without seeing who he truly is. See him as The Lord sees him. And to cherish each and every moment with my boy.