Tuesday, October 14, 2014

Julie's birthday

Julie came over on Sunday night for dinner and to watch a movie. We are so lucky to have her as part of our lives. She is amazing to us. She always helps out. She loves us and would do anything for us. She jumps in whenever needed and sees needs before we ask. She loves the pups almost as much as we do and they adore her. She is wonderful to Hayden and will help Thomas move things or even store junk in her garage for us. She treats me like her own. I'm so so grateful for her. She is an earthly angel that we all adore. 

In a couple of hours, on her birthday, she will come over early and pick Hayden up and take him to brain mapping and neurofeedback. She will sit with him for two hours. She will then take him to get lunch and to her journalism class with her. There he will be assigned stories. On the way home she will stop and get me a diet coke and lunch if I want it. She will drop Hayden off. 

She will then run home to feed her dogs and make the long trek back to Tempe for a birthday celebration. She will spend most of her day, as she does every Tuesday, taking care of us. 

She sacrifices and gives and does for and treats us wonderfully. We love you, Julie. Today and always. So grateful for you and the angel you are in our lives. 

Sunday, October 12, 2014

Answer is Cupcakes... For the Trapped Soul

My sweet sister did it again. She sacrificed a week of her life to help me out. She spent days making more cupcakes for cupcakes for a cure and to help me with my medical bills and be able to get some much needed medications that I so desperately need. What she did provided so much more than life sustaining treatments. She gave me unconditional love. She gave me hope. She showed me that I do still matter. That I am enough. And that there are people who care about me deeply. She helped me to see a light in the tunnel again. 

Life is so hard. Given.  We all know that. What is so hard is the continual day after day. Moment after moment. One disappointment and trial after the next. Some days, no matter how hard I try or how much I beg for peace and comfort, I still feel isolated in this body and house of mine. 

I am trapped. Trapped inside a house with complete reliance on others for delivery and help. I cannot just run to the store on a whim. I can't take my son to the ER if he gets hurt. There is no last minutes. All must be calculated and planned out precisely. Life is no longer spontaneous even to the just let's run to QT or Walmart or the movies or to a friends. No. Everyday things are not possible and I live trapped in a world dependent on others for freedom. 

I am trapped. Inside a body that no longer does what it is supposed to. I constantly battle how much and of what activities will take me down. Doing the dishes means I cannot read with Hayden. A load of laundry requires me half of the time losing consciousness due to bending. Shaving my legs and washing my hair in the same shower...impossible. I chose between reading with Hayden or playing a game. Or between eating and walking. Nothing in my life is spontaneous...not even eating a simple apple. It all has to be calculated and planned. Any deviation and I lose consciousness. Even letting the dogs out to go to the bathroom could mean rest of the day flat in bed if the sun hits my body. My spirit is trapped in a frail and disease ridden body. 

I am trapped. I am trapped by the lack of money. Not just tight or no extras but trapped with less coming in than going out. Trapped by th inability to pay our bills. We have cut everything from home phones to cable, cut every extra and trimmed on utilities and renegotiated car insurance. We budget low cost food and are ao grateful all three of us really like ramen. We are confined by knowing that no matter what we do it is never enough. 

I am trapped. Trapped by the confines of doctors and medicines that I need to help me get well and the lack of money thereof. I am strapped to do the things that I know keep my body somewhat going. Without Dr.Shiflet and Q96 vitamins and frankincense to control seizures, I struggle. I laugh at the thought of the doctors telling me weekly massage would help to overcome the inability of my leg to move without so much effort. My hands are tied to seek out treatments that may save my life. It does not matter that we have insurance. It isn't enough. 

I am trapped. I qualify for disability in so many areas but am denied because my disease is so rare that it is not on the list. My limitations and abilities are strong. I cannot stand for more than a few minutes without passing out. I see the sun, I have a seizure. I cannot sit with my legs down or blood clots develop. My kidneys do not filter without help. I cannot walk and digest at the same time. I must sit for 2 hours after I eat each time or I vomit. I hurt. I am consumed with pain and throbbing sensations. I am trapped by the inability to get the financial help I need to help us survive. 

I am trapped. I cannot work. I have tried. I have failed. I struggle with memory. I struggle with walking. The pain is intense. The complications and side effects are magnificent. I need to work. We desperately need money. But I physically am unable. I feel so guilty yet I can't do anything about it. I feel trapped by my desire to help my family out and my inability to work. 

I've been lucky. Most of my life I have had the means to provide for all my needs and most wants. Life was within my reach. I don't say this for pity or help. Just to raise my voice in understanding. To say that those who struggle are not failures or worthless. I will testify that struggling to figure it out each month. Praying and pleading that Hayden has what he needs. Praying we can afford to have a roof over our heads another month and food to eat and the medications we need is all consuming. I feel so much for those struggling. I have empathy to an entirely new level. 

And yet. The blessings are so prevalent. It's easy to see he Savior's hand in our lives when we rely on Him for all. I trust that if I need a ride, He will send one. I trust that I will be able to feed Hayden each day even when I am scared the food will run out. I am so blessed that miracles occur when I am unsure how we will make it the next month. I am grateful to see how my Savior takes care of me. 

Most often it isn't in the ways I would expect. I see my Savior meet my needs in ways that point that it was Him that answered my prayer. Somedays I get scared and overwhelmed. Will I fall? Will I cause Hayden to go without the necessities of life so vital in his youth? Will I scar him? Yet my Savior answers the call and provides ways for my survival. I am given enough. 

Cupcakes yesterday were my answer for this month's dilemma. With less than $30 to our names and bills everywhere and food scarce, I was trembling inside and praying and pleading for help and guidance. Jodi called feeling inspired to make cupcakes. I know she thought it was for saving for a treatment or further transplants. Little did she know it would be utilized to get the medications I so desperately need and provide us with much life sustaining nutrients to feed our bodies. 

Suzi showed up last night with dinner for us. Lisa invited us over for breakfast. More came to our rescue. My dad took us to dinner on Friday night. Many donated. Many helped. We are grateful beyond earthly words. 

The generosity and kindness of those around me astound me. The ways the Savior answers my pleas for help and guidance are answered. I know He teaches me faith and waiting patiently upon The Lord.  I have learned His ways are not my ways. But I am learning to align myself to His will. I trust that He will not let me fall completely. Yes. I will stumble. I will trip. I may crawl. But my Savior will lift me and send me aid. He will rescue me and my family. Until then....we will wait patiently upon The Lord. And we are ao grateful for my sweet sister and Lisa and Katie making cupcakes yesterday. I'm grateful for those that purchased the cupcakes. I'm so grateful for those that sacrificed for me and my family. 

Cupcakes to me represent hope and help and love and answers. They are the light that helps me to walk and no that I truly do not walk alone. 


Thursday, October 2, 2014

My creative dyslexic child

With Hayden undergoing neurofeedback four to six hours per week, it is constantly on our minds here. Monday and Wednesday nights he must go to bed early and on Tuesday and Thursday nights he is exhausted.

I awoke this morning thinking of him and how he learns. I wanted to make sure that he understood he wasn't broken. I explained school systems teach to tree climbers either cats and monkeys and bears and he is a fish. "If you judge a fish by its ability to climb a tree, it will live its whole life believing it is stupid." Said Albert Einstein, one of the most amazing dyslexic minds ever. 

We talked of being incredible swim fish and how being the best fish you can is what is important but never trying to be a monkey or a cat. I encouraged him and expressed that neurofeedback isn't trying to change him from a fish to a monkey but to give him all he tools he needed to become a proficient swimmer and a wonderful fish. He smiled. 

I made a list of some amazing characteristics that my son has. He sees the world so differently but wonderfully. 

He has a bright mind. He is an out of the box thinker. He utilizes his brain's ability to create and alter perceptions. He is highly aware of his environment and feels with all senses. He is curious and always asks, why. He decodes the world thru all his senses. He is highly intuitive and insightful. He thinks and sees multi-dimensionally. He may have a motormouth to some but he must speak and hear in order to process. He experiences thought as a reality. He has an incredibly vivid imagination. He believes everything is possible. Impossibilities don't exist. It just must be adapted and looked at from a different perspective. He is an amazing philanthropist. He cares. He sees need. He believes he was but here to make a difference. He wants to make the world a better place and feels it is his job and doesn't leave it for another but takes each challenge head on. 

With all of these amazing qualities and abilities. He will change the world. His opportunities are endless. 

Hayden, my amazing boy, you are not broken. You are amazingly wonderful just as you are. You may have to work harder and try harder but nothing is impossible. 

As it states so clearly in the scriptures....I show unto men Their weaknesses.... If they will humble themselves, I will make the weak things become strong. 

Yes. You have trials to overcome. You have obstacles you must face. You must learn to forge your own path. In doing so, you will achieve. You will have a great life. You will leave your own unique mark on the world. And you will definitely succeed. I have no doubts. I believe in you. I've been blessed to see your heart and soul. You are cherished of our Savior and Father in Heaven.  With them, you will overcome and become exactly who you need to be to fulfill your mission here in this life. I am so grateful you are learning to overcome and conquer in your youth. For you will know hard work pays off. That nothing is impossible. And you were out here to succeed. 

I love you. Always. Forever. And no matter what. 

Wednesday, October 1, 2014

Temple sealings

I was lucky enough to get to go to the sealing of Zee, Jet and Rudy to Jordan and Sarah. They are seriously two of the most patient and loving people I know. They have only been married four years about yet have adopted all four of these precious children. 

Rex is 4. He was adopted officially a year ago. He loves us and we love him. They were blessed to get him when he was 2 years old. He is loving, hyper, active, crazy and so much fun. 

Zee has been with them on/off since he was 8 months old. He came with broken arms and about his birth weight. Poor little guy. They have fought and prayed for him. Fasting and prayers went up to Heaven for him to be able to be apart of their family. He has been placed with his birth family multiple times and each time ended up back in their home for Sarah and Jordan to nurse him back to health and trust. When he was taken away last June, I thought the fight had been lost. In August, the birth grandma showed up at the door with Zee and signed over custody. 

Jet and Rudy have been blessed to be with the Weeks since they came home from the hospital. These cute twin girls are precious. They turn one this month and are so lucky to be apart of this amazing family. 

In the temple, Thomas and I were to hold Rex. He came In to the sealing room and excitedly yelled, "Aunt Jer!!!!" And came running to me. He was restless during the sealing and Thomas basically was wrestling him. 

Zee and Je and Rudy came in. All in white. All precious. Oh how I love this sweet family. 

After the sealing, this was he scene. Boys running crazy all over and the girls crying. 

I love this picture. His is their life. Man they are cute and precious kids but a handful. I love them. I love their parents. I am so grateful to have been part of their lives. 

It's decorating time

Hayden likes all things grows and scary. He wanted to make potions for his scary head guy. We took old bottles and filled them with candy eyes and boogers. Hayden decorated the bottles by dying cheese cloth and gluing tops and making them look old. He took an old bottle and put in spiders. He tipped them on their side and had the spiders crawling out. He decorated with chicken fat and made snake oil. 

He put spiders and cobwebs and creepy things together. He is so proud of his masterpiece. 

We had so much fun making all of the fun accessories. 

We are ready for Halloween. Hayden has designed his costume and is making it. He is working on. All aspects. I love that he can envision something in his head, create it on paper and then make the paper drawings come to life. He is one creative kid and I adore him. 

Trick or Treat will be here before we know it. I'm trying to soak it all in and enjoy it all. I'm holding the memories and time closer to my heart than ever. I cherish each moment. Life really is so so good. 

Simonton family fun

We started our monthly Simonton family get togethers again. So far we are three months in a row. Life is busy and crazy with so many of us and all being pulled in different directions. Especially now that Jodi is in Glendale and JD is in Minnesota. With church callings and different church times, kids headed everywhere and responsibilities, we have tried to make a greater effort to get together. 

We decided to rotate houses. On your month, you provide the main course and assign food assignments out. We also celebrate birthdays so we celebrated Brooklyn and JD and Talmage. Jodi brought an ice cream cake ...:yummy!!!

I love these kids so much. We missed Josh and JD and their families but was thrilled that Grandpa and Grandma Simonton came, jake and Jodi's gangs and Suzi, Lisa and Chad. So fun. 

We are yummy chicken enchiladas and ate ice cream cake and colored and laughed and talked. We caught up and laughed and had so much fun. I love my extended family. I love my sister and brother. They married incredible people. I love being surrounded by so much love. 

Bottom picture: Brigham, Kiley, Katekyn, Kaykee, Talmage, Brooklyn and Hayden

14 years

Fourteen years and counting....

I feel so blessed to be married to my precious husband. He is a good man. He honors his priesthood. He gives his all. He loves us. He works hard. He serves everyone. He has a heart of gold. He tries hard to do nice things for us each day. He is a wonderful father. He is an incredible father. And he is a dedicated disciple of our Savior. 

Thomas gets up early each morning. He gets ready for work. Makes sure things are done such as garbage out, starts laundry and takes the dogs out. He goes to circle K and gets me a diet coke before he leaves. He makes me an egg and toast every morning to keep me from getting sick. He wakes up me and Hayden. Gets me my meds. Reads scriptures and gathers us for family prayer. Before he heads out the door for work. 

He works hard all day. He gives his all. He is friendly. He helps everyone and does whatever is asked even if it isn't technically in his job description. He cares. He gives his all. He runs errands at lunch. 

He comes home. He makes dinner. He helps Hayden with anything he needs. He helps me with meds and walking and whatever I need. He does laundry. He runs errands. He grocery shops. He helps clean the house. He pays bills. He fulfills his church assignments. He helps others. He works on our Q96 business. He gives his all until late in he evening when we again gather for scriptures and family prayer. 

Thomas is a good man. He gives his all. He loves with all of his heart. He tries hard to be the best father and husband around. He gives his all to his Savior. He listens to the Holy Ghost. He serves those around him. He honors his priesthood. He gives me priesthood blessings when I am sick. He calls down the powers of Heaven to bless our home. 

I am so grateful he is mine. I am so grateful that we are sealed for time and all eternity. Knowing we will be together forever is a blessing I cherish each day. 

Happy Anniversary, Thomas. I hope we have many more years together here on this earth. I look forward to making more memories and sharing this life with you. You are my heart and soul and I love you.