Every single time I ask him to pose for a picture, this is what I get.... Eye rolls, silly faces, he tells me I love Max instead of Mom and crazy boy. He is sheer crazy fun right now. He's a riot and more fun than I could have ever imagined. Little does he know, I secretly love it and he brings more joy to my heart than I can imagine.
Monday, July 27, 2015
Maya is so funny. She can jump and climb send walk up you sideways. Thomas calls her his little goat.
Her favorite game is getting a treat in her mouth and then prance on top of you and in your face showing she has a treat and you do not.
Sunday, July 26, 2015
I love that I follow some great inspirational people on Instagram. As I look through my feed, he quotes and images sometimes feel as if they were inspired to post for my benefit. I read them and oray to be able to grasp the concept in my heart and apply it in my daily life.
This one came as I walked in from surgery. Things needed done. I was miserable. In this simple post, I was reminded that all I have to do each day is what my Savior asks me to do. I out so many unreasonable and demanding expectations on myself and beat myself up when I can no longer do what I think I should. This was a reminder that the Savior is kind and gentle and loving. He understands bad days and heartache and illnesses and life. He also knows that Somedays just surviving is enough.
I'm grateful for all those that take the time to inspire others. Their work has influenced my life. I'm grateful for the inspired messages. They bless my life daily.
Thursday, July 23, 2015
Since returning from the beach, my life has consisted of doctors. I went in for a sleep study on Tuesday night. (Thank you Suzi for watching dogs and Hayden overnight since they wanted Thomas there and then on standby). I was hooked to a partial EEG and EKG, a throat swallow study, and testing for restless leg and to rule out sleep apnea. (No sleep apnea. Pain. Severe pain is keeping me up. No other results back yet. Waiting on swallow and night seizures etc etc). My sweet husband sat there until I was in bed. And asleep and them was back at 5am to pick me up. He came with breakfast in the cAr, my meds and a diet coke. Seriously. How did I get so lucky? I'm in awe at how well he treats me. I love him with all my heart. He is my strength.
Ok. Back to doctors. Then on Thursday, I underwent the second part of my foot repair procedure. I had cortisone shots accompanied by blocks and deadening of nerves. I go back for third treatment next month to cut/destroy remaining nerves. And although I opted to go thru with a local only and no anistesistha, I second guessed myself mid procedure. Boy howdy did that hurt. I stung like crazy and I was strapped down. It didn't last long but long enough for me.
Although two days later, I am so glad I opted for no anistesistha, man at the time was I wishing I would have. But I didn't want to have to go they the side effects of being under. It definitely makes recovery easier.
I also received new accessories from insurance. My wheelchair, which is temporarily being named "the throne" and my walker with a seat and wheels. This walker absolutely saved me after foot surgery and getting around. I know the wheelchair will get good use.
Hayden was fine with the wheelchair. But he asked, "how old am I getting that my mom needs a walker? Um wait. I am only 13. What's wrong with this picture?" He was laughing and so was I. We need to laugh at ourselves. Hayden asked if I was replacing Clumsy the Cane with this huge monstrosity. I laughed hysterically. He is a funny boy. I'm so glad we can laugh at ourselves and the funny things I am doing in my forties that I would never have imagined. We have to keep laughing. It is what it is. We just need to make the best of it.
Next week starts the fun. Annual well women's exam, mammogram, lab tests, bladder biopsies, pelvic wall biopsy, visit to a new gastrointestinal doctor, and more pulmanologist testing. It should be a crazy and eventful week. Not looking forward to it but with the new diagnosis, I am praying they can help ease and manage some of the intolerable symptoms better.
Along with this fun, I get to arrange paperwork to see a rheumatologist to diagnose and manage my autoimmune disease. And of course, I must make time to see Dr Shiflet and be adjusted and get a foot bath. I desperately need both.
My life is good but I must document the not so fun part of battling my disease. I just have to rememeber, I am not my disease. I am still Jerlyn. I am a mom, a wife, a sister, a daughter, an aunt, a friend, a Mormon, a firm believer and follower of Christ, a writer, a dreamer, a believer and a teacher and student. I am Jerlyn. I have an autoimmune disorder, I am currently in pure autonomic failure, diagnosed with small fiber neuropathy, peripheral neuropathy, an us identified autoimmune disorder, cardio-neurogenic syncope, I have multiple system atrophy, damaged mylenin sheath, strokes, seizure disorder, and the list goes on.
And the blessings FAR outweigh any heartache and challenges. I truly am blessed and I do have a wonderful life surrounded by the great ones. I'm so grateful for all I have, all I have been given and all I am. It is a crazy life but it's mine. And I pray and plead every day for another day, to stay here with those I love and cherish, and continue to walk this earth. I'm so very grateful for my life and all that it entails, even my diseases. Because it has taught me so much about living. I havee learned to live every day without regrets. And that is priceless.
This boy of mine..... Simply amazing!!!!
He is kind and good. He is helpful. He gives his all me sees a need and tries to fill it. He sacrifices. He loves The Lord with all of his heart. He is obedient. He is happy and positive and upbeat. Not only does he see the glass have full but he is so incredibly grateful for the water. He is a delight. He tries hard to serve. He has learned to clean and cook and give me my meds. He is always asking what he can do or how he can help me and others. He is so Christlike.
I feel overwhelmed with the responsibility that comes with raising him. He is so special that I often wonder who he was before he came to this life and what his role is here and in the celestial kingdom. I pray that I can do my best and give my all to teach him enough and help him obtain all,he was sent here to do.
Did someone say"TREAT?"
Sorry. With my crazy life Somedays I must document the random and crazy things that happen so when drs ask me later, I have a pint of reference.
I developed the craziest rash at the beach alrhought these pictures were after treatment and when it started to clear up.
They were round hives basically in a round circle formation but only on both elbows and both knees. It started with my right elbow burning at the beach and spread to left elbow and move to right knee and when I returned home my left knee.
Pharmacist said he had never seen anything like it being so symmetrical and only in those four spots. His guess? Allergic reaction to something? Benadryl cream and Benadryl are helping alrhought right side still is infected the knee even worse. I will be at dr on Tuesday so I will ask then. Very strange. Very strange. If doesn't clear up, pharmacist said it may be onset of rheumatoid arthritis. I'm praying it's not that.
We barely came home from the beach, and a day later, Hayden headed out to the lake for skiing, canoeing, paddle boarding, swimming, barbecuing, and fun with all of the young men and young women in our ward.
We have great leaders that are ao good to our youth. We have incredible youth and great kids.
I'm so grateful for the young men's program at church that helps our youth have fun activities that are fun and safe and uplifting.
Leaving the beach is always hard but it is incredibly easier when we get to come home to these little loves. Max and Maya were so excited to see us. They were jumping and running. Then Suzi stopped and got Olivia and brought her over as our stuff was in her car. At midnight, the dogs couldn't stop wagging tails and giving kisses. They were so so so happy. I absolutely love these puppies.
These dogs love and adore Hayden. I think all three of them secretly like him best. He obviously adores them. They play, tease one another, snuggle and absolutely love and adore each other.
So, although it was sad driving away from the beach, it was sheer joy walking into the house and seeing these sweet little fur babies of mine.
I am so grateful that my dad has continued this tradition since I was 14 years old. Next year, Hayden will be the same age I was when I started going to this same condo.
My mom wanted us to go every year. It was one of the last requests she had of my dad was to get us together every year at the beach. He kept his promise. He has made sure it was possible for all of us to go. When we outgrew unit 408, he purchased unit 307 for himself and then Josh purchased 206. Condo 403 became available and Josh bought it and my dad purchased 206 from him. From there he continued to buy condos. Jake owns 402 and Josh 403. My dad bought 408, 407, 406, 307 and 306, 206, 205, and 202. Why? So we could all be together.
He makes it a priority to help us get there. He has continued this tradition to honor my mom and keep us all close.
He tries to do individual things with the grand kids, as much as possible, to make special memories. He tries to take us out to dinner one night and play games another and do fun activities like barbecue on the beach.
The memories we have made over the years are priceless. This is where I measure my life. I evaluate where I am and what I accomplished the prior year. I notice how much each child and sibling has changed. I celebrate the victories and mourn the loss and changes. I recommit to be better, set new goals and give credit for things that have been accomplished.
Most of all, I feel so close to my mom here. Each year, at one point or another, I feel her with us and watching us. I feel her smile and thank my dad for his continued effort to provide us a place to gather and build bonds. I feel her approval. I see her smile at each of the grand kids. I feel her approval and joy in me and my own family.
I cherish the moments with my siblings and nieces and nephews. I love catching up with them and spending time reminiscing and building new memories.
And I absolutely love the time with my husband and son. I love the closeness we feel. I love the memories we make. I love the sheer joy that is felt. I feel love surrounding me and encircling me. To me, Heaven on earth is the beach. I am sure that the celestial kingdom will hold those sacred feelings I feel when we gather at the beach. As each family arrives, there is joy and hugging and arms open to embrace and welcome them there.
For me. This is pure joy. I don't need to go to amusement parks and out to dinner. I don't need anything fancy. I just love the beach, being in the condos or down on the sand. The peace I feel and gratitude for my life is beyond words.
This year was a struggle as I said goodbye as I was unsure if I would be back. I pray I will. In fact, more so now than ever. I do believe my Savior will allow me more time with those I love. But, if not, just like my mom is at the beach in spirit, so will I be. I will be there to smile as each family comes and hugs the next, I will relish the changes in each of the kids, I will celebrate and honor their victories, u will host the as they mourn their losses and I will smile as each child outs their toes in the sand for the first time each summer. I will sit back and smile as I listen to the cousins play. I will laugh as my siblings compete in cards. And I will hold tight to my husband and son and reassure them that I want them to smile and have fun and find the joy in life. I will hug them tight and let them know that I love them with all my heart. That I am helping to prepare a place for them in the eternities and that I want them to go on living. I want them to smile and laugh. I want them to find joy and happiness in this life. I want them to know I love them with every ounce of my being. And that I am so proud of them and who they are. I will cuddle up to me them as they sleep and I will always go to the beach with them.
I am so grateful for my dad and him keeping his promise to my mom all those many years ago when I was barely older than my son is now. I'm grateful. Oh so grateful for the countless memories and lifetime of joy that 408 and the other various condos have held. So much. Oh so much joy!!
Sunday, July 19, 2015
Friday night was Hayden's favorite beach adventure.
The teens (12-15 year olds) went off on their own.
Hayden, Casen, Braden, Kaylee, Katelyn, Kiley and Natasha went to Ruby's by themselves. They walked down the pier, ate at Ruby's, ordered their own shakes and burgers, had to pay themselves, walked back, and then played games in a condo by themselves.
They had their own adventure without any parents.
While there, the girls miscalculated their food costs. Hayden said he wanted to sit at a separate table and have his own bill because if any went over, he didn't want to have to do dishes. How funny when the girls were almost in trouble. They had $59.20 tab and only $60 cash with them.
Casen and Braden had enough money for their tab and $3 tip. Luckily I sent Hayden with extra money. So at least Hayden was able to leave a $4 tip. Awful tip but better than nothing. Silly,girls.
They had so much fun.
Hayden wouldn't let me take a picture of all of them as they left. But he was so very happy! His face says it all. He felt grown up and so grateful to be included.
So glad Hayden has so many cousins close to his age to experience such wonderful adventures with.
On Thursday the kids needed a break from the beach. We went to gepetto's, the coolest toy store and spent over an hour there playing with toys. Then Jodi took us all out to lunch for street tacos. I was exhausted and miserable. I went home and slept the rest of the day! Suzi took the boys around Carlsbad to take cool pictures.
Hayden loves Ruby's. He loves walking down the pier to the end to eat their delicious shakes.
One night Aunt Suzi took Hayden and Talmage for a walk down the pier, and then bought them shakes at Ruby's before walking back.
The shakes were yummy. But I love more how much they enjoyed being together. I love how Tman looks at Hayden and how he utterly adores him. I love that Hayden will still hold his hand and treat him wonderfully.
Oceanside is beautiful but it is amazing feeling being out on the pier at night overlooking the ocean, listening to the waves roll in and seeing the lights from the city of Oceanside. It is simply amazing.
One of my,favorite parts of the beach is watching Hayden enjoy time with his cousins. All of them, from the oldest down to the babies. Age doesn't matter. They all hang out together.
Cousins rock! The absolutely are the greatest and make the very best friends!
This is low we do the beach. Almost all umbrellas and blankets and asu sun shade in the picture ALL belong to the Simonton/Bair gang! All 46 of us take up a lot of space. We grilled hamburgers and hot dogs on the beach and built holes, had a couple dozen boogie boards and many chairs and towels. Crazy but fun.
I love my toes in the sand, a gentle breeze and the sounds of the waves crashing. I love the laughter and talking of cousins. I love visiting with my siblings.