Ashlyn, named after her Aunt Jer, of course, is the smiliest baby ever!
Tuesday, March 3, 2015
Meet my sweet and precious new little niece, baby Ashlyn. JD and Cassie have a cutie. That's for sure. She is so precious. So so so so precious. I fell in love immediately. Her smile. Her face. Her sparkling eyes. Her joy. Her sweet little fresh spirit from Heaven. She warmed my heart and brought peace to my soul. Oh how I love her.
Sunday, March 1, 2015
Hayden went to see the heart surgeon on Friday. We were all geared up. Ready for heart surgery for my boy. Then we talked to the surgeon. Great news. The surgeon does not want to do surgery now. It is too complicated. Too risky. Instead he thinks he will eventually grow out of it. That his body, his chest bones and ribs will envelope his wires that are exposed. In the meantime, he will be limited on physical activity due to the cartilidge pain involved. We are to treat with ibuprofren and Tylenol.
We are so happy. Thrilled. Relieved.
I'm so glad he doesn't have to face surgery right now. We feel this is a tender mercy from our Savior. He loves us. And knows right now, we are too overwhelmed to face this trial.
Our Savior loves us. He is so good to us. He is so kind. He knows our limits. And He helps us. I know if we were required to walk that road, He would have carried us. But I am so grateful for his tender mercies and love. And I am so happy for my sweet boy and pray he will find relief with medications instead of surgery. Feeling so blessed.
How is it possible that anything a doctor says could surprise me after the past four years? But it happened and I was absolutely blindsided at the doctor this past week.
Let me back up. A couple of months ago, I heard about this amazing doctor who dealt with my disease. He had been able to help so many lessen their symptoms and have a better quality of life. I couldn't wait to get in to see him. I allowed myself to hope. I allowed myself to imagine being able to once agin do some normal things once obtainable. He asked me to bring a list of my three greatest complaints to see if I could minimize my symptoms. I was so hopeful for some relief of the awful autonomic dysfunction symptoms.
I eagerly went to the appointment and was excited to meet Dr. Levine. We talked. He read my files. He pushed his chair back and crossed his legs. He took a deep breath. I hung on his every word ready to find some relief. He smiled a half smile at me as he explained I was "complicated". A little hope died but I was still eagerly hopeful for help. Instead, he explains the disease. He explained that certain varieties of the disease had no,treatment and no chance for relief and there was nothing known to help ease the disease or stop it. My heart froze. Then he continued... With my symptoms where they were currently at, my vascular system was shutting down. My arteries and veins were no longer pumping blood to my extremities which was causing the sensations of my,blood itching and the excrutiating pain in my legs and feet, the cramping, and my struggle to breathe. More words were spoken as I felt the hope fled from my heart. Then, as if that wasn't a hard enough conversation to swallow, he added that where I was currently at with my symptoms, my body could only probably survive another 4-6 months.
I fought hard to fight my emotions as I looked at Dr. Levine. His mouth was still moving and words were coming out. However, "4-6 months.... Nothing more we can do..... It's so complicated.... We don't understand.... 4-6 months.... Nothing more.....no relief" radiated in my heart and head. I was deflated.
I told him I felt better than previously. Yes. It is true. The above symptoms were causing struggles and complications but still not as bad as I once was.
We discussed a treatment. Experimental. No results as to why it works but they have had some success. It was extreme. Complicated. Extreme. I asked what. I'd try.
He explained a high dose combination of IVIG and other medications, highest allowable by law, for 3 months, consistently given, may get my body to "give up" where the autoimmune is hiding and they could identify the type of autoimmune disease. He said it would take me surcombing to almost an inch of death to trick my body into giving up what has taken over in my body. He said I could expect to develop meningitis and be miserable. The treatment had a success rate of 10%.
Here we go again. I found myself agreeing to the treatment although part of me wanted to scream. So many emotions and feelings went thru my head and heart. I saw myself enduring the first experimental,treatment at Mayo Clinic. I had meningitis. So so sick. Almost died. Then the next treatment where I was so sick but handled it much better than the first. I felt that I was spared the first time. The second I had dr Shiflet and essential,oils to help me thru. This time I also had Q96. I would be spared. My life would be spared again. I felt peaceful.
The doctor spoke. I could no longer hear his words. I fought back tears as he explained he would contact Mayo Clinic doctors and the insurance company. He would schedule me for tests once insurance was approved. He would get me in for autonomic tests. Then start treatment. I would come back in at the end of treatment for additional testing to see where my autonomic system was at and undergo testing to see of they could locate the autoimmune disorder that was unidentifiable at the moment.
I fought hard. I set my next appointment. I walked to the waiting room and out the front doors. I could no longer fight back the emotions. All of the hope and eager anticipation fled from my body. Fear and loss and hopelessness replaced all emotions. I felt absolutely defeated. How much longer must I endure? How much more must Thomas and Hayden continue to suffer because of my illness? How was I supposed to homeschool Hayden? Could I survive the treatment? 10% chance. 10%. 1 out of 9 chance of death and failure. I could barely breathe. My heart broke. Completely.
I cried or sobbed to Jodi not knowing how to tell my dear husband. She encouraged me. She gave me the strength to tell Thomas. My husband was inspired and knew exactly what to say. He assured me that the odds were not too great for our a Savior. He assured me that the Savior already knew my illness, my autoimmune disorder, my weaknesses and more. That I would be spared and protected by our Savior.
I calmed down but was beaten down still. I got home and collapsed. I cried into my bed. Sobbed. I was blindsided. Broken hearted and blindsided.
I will fight this I will give my,all. I will trust my dear Savior. But I really hope that someday I will find relief from this illness. Unfortunately, I know relief will only,come in the form of death and escape from this life. Instead, I pray I will be able to endure. I pray I will be able to handle the pain and disease inflicting havoc on my mortal body. I pray my Savior will continue to walk with me. To guide me, help me and keep me safe always.
Sunday, February 1, 2015
Hayden always laughs that I say, "Not my circus. Not my monkeys" in response to the craziness in the world around me. So when I got to where I felt like I was running in circles and ready to pull my hair out, Hayden said to me, "so, why are you going crazy? It's not your circus and not your monkeys, so why do you care?" I hugged my boy and told him unfortunately this time it is my crazy circus and all the crazy monkeys running around are mine to conquer and tame. He responded, " oh Boy. It must be bad if the entire circus and all the monkeys are coming after us." I hugged my boy. Sometimes all I need is his sense of humor, his joy and his love to pull me out of going completely hairy carry.
Yesterday we celebrated the birthday of someone I love and adore. Suzi and I have been friends since way back to the days of college roommates. She has been apart of my crazy life since I came home off of a mission, many many moons ago, almost 20 years. We have worked at the same jobs, had the same fun crazy roommates, she has been there as I met and married my husband, sat at the hospital with me when Hayden was in surgery, we have been on numerous vacations together, she has cleaned my house and made us dinner, she has been a second mom to Hayden and helped us more than I could ever express.
Suzi is more than a friend, she is family... The very best Aunt Suzi ever. As these pictures clearly show, she is loved and adored by all the nieces and nephews. And I love the picture of her with Hayden and Tman. Their faces show the love that all of us have for her.
Suzi has walked this illness with our family. When this journey began, and I miscarried twins and was so sad and sick, she booked a trip for us to Hawaii, paid for it and watched Bubba while we were gone. He became so sick that he almost had to be hospitalized. She took off work and cared for him like her own. Little would we know that just a few short months later that I would endure this illness and spend the next three plus years fighting for my life. I have gone to that happy place of me and Thomas sitting on the beach watching the waves roll in and out, more times than I can count. It was a time for. Thomas and I to reconnect and to spend precious time together. I cannot express the gratitude I have for that generous gift during this trial. It has made such a difference.
Her generosity has reached far beyond that amazing trip. She has paid for cleaners to come in and clean our home for three years while I couldn't do it and to take the load off of Thomas. She has paid for Hayden to get many therapies and treatments he has needed like brain mapping. She has sat by my side and read to me.
Aunt Suzi has been a lifesaver. I remember when we were trying to adopt. We were explaining to Hayden that there were kids without moms and dads. He piped in and said, "it's ok mom, they may not have moms and dads but their aunt Suzi's will take care of them!" I went on to explain that they didn't have anyone. He said, "we need to go get all those kids. Life without an Aunt Suzi would be awful." I could post a picture of every child's face showing the same look and I am certain each one would agree that life without Aunt Suzi would be dull and boring and not the same at all.
Yesterday we celebrated by going to see he movie Spare Parts and how one teacher changed lives. It was fitting. Our lives are better because Suzi is in it. She has made a positive impact on all of us. Our lives are better because of her.
I smiled as I looked over during the movie and Hayden was leaned into Suzi talking about something. And smiled even bigger when Tman spontaneously jumped on Suzi's lap, hugged her and told her he loved her. Then, as we sat in Cheesecake Factory, she was the cream filling between Hayden and Talmage again. They both were talking non-stop to her and laughing. She took turns playing rock, paper and scissors with. Talmage and talked to Hayden about favorite things. I smiled. I sat there with my sweet sister, Jodi and my adopted sister, Suzi and thought how very blessed I am.
Happy Birthday, Suzi! We love and adore you and are so very grateful for the gift of YOU!
Saturday, January 31, 2015
After talking to the attorney, the game plan was to go ahead and file the lien notice that Suzi has on our car. We need to get our taxes together and file and get our return back so we can get the medical treatment for Hayden before the court takes it away from us.
We have to have Hayden's cardiac heart surgery scheduled ASAP. We must contact Mayo Clinic to schedule another EMG testing (painful and miserable for me), a tilt table test (that a less it I possible for me to walk for over a week), run automatic sweating and breathing tests along with movement disorder testing. All miserable. All painful. All just annoyingly miserable.
But, without it, no possibility of disability approval. So I will be their monkey or Guinnea pig, and endure the miserable and debilitating testing.
I will try to figure out our rights and find all correspondence to see what we can do to fight our fate. It's a long shot but I pray somehow we can pull a miracle off and keep the ability to at least provide the basic necessities for our family.
There are days it feels like I might just collapse from the stress and magnitude of trials we are asked to endure. When I feel I cannot walk one more step, my loving Savior sends a tender mercy. He sends a sign or a glimmer of hope or act of generosity or kindness or love. And I know that no matter how bad it gets, we are not alone. We walk with diety. We have divine help. We have one on high who loves us perfectly even in our imperfections.
Today the peace came in a question from Hayden. He asked about bankruptcy and I explained it was utilized since the time our Savior walked this earth. It was the year of Jubilee. When all debts prior to seven years were forgiven. A kindness and a tender mercy. Showing us that The Lord didn't want us or Need us to suffer for something we couldn't help. We are forgiven. A gift. On the seventh day we are able to rest from our labor and worldly problems. On the seventh year, we are given relief from debts and worldly monetary issues. I realized that just like the atonement, my Savior already planned a way for us to escape this medical and financial nightmare. I felt His love. I felt His mercy. I felt His tenderness. And I knew no matter what the world throws at us, we walk with the Savior.
While at the dentist fixing the last of my cracked and broken teeth, I get an urgent text from Hayden saying someone was at the door asking for me. He wouldn't answer but the guy kept pounding. He was scared. I was scared for him. I told Lisa to speed back. I was panicked and scared for my boy. He was giving me the play by play. We raced home.
My heart skipped a beat as this man with papers in his hand walked up to me and asked my name. I had never before been served a subpoena. A summons on a lawsuit. My heart felt like it would pound so fast it would take off on its own. Then my heart skipped a beat.
The server explained what I needed to do. When I needed to appear in court. What and who was suing us.
I didn't know what to do. This is uncharted territory. We knew that bankruptcy was immenint. We knew there was a possibility of them coming after us. But this company had cleared things up with us. Written it off due to circumstances. Then, another company bought the loan. Probably a penny on the dollar. They are ruthless. They will not understand nor work with us. They want to take us for all we have which isn't much these days. But, it is all we have. We have one car. We sold two and bought one. We owe on it but it looks like they are going to take our only car anyway. They want to garnish Thomas' wages. They want to ruin what is left of our lives.
Each month, we pick and chose the meds I take based on how much money we have. We eat a lot of ramen. We don't spend money ever. We try so hard to make do. We buy all of our clothes from garage sales. I buy food from discount stores. We have sold everything worth anything. But, it isn't enough.
We cannot declare bankruptcy yet as Hayden has heart surgery and I have to go forward with a testing regimine and fear of another surgery. With my liver shutting down, I am so scared of liver failure and needing other services. So although bankruptcy is needed, we have to endure whatever they do to us. We are praying for an understanding judge. A miracle. A help. We are praying for a door or window or something to open for us. We are praying for a way out that we do not see. We are pleading for our Savior to intervene on our behalf.
Our job, regardless of what happens, is to have faith. Faith that whatever these debtors do to us, we will have the ability to keep our utilities on, keep our car so Thomas can get to work, pay to fill the car with gas, and pay to put food on the table. All else doesn't matter. We are praying to be strong enough to sustain this trial along with the others we are dealing with. We are pleading for help. We are praying for patience and more long suffering. We are pleading for strength. We are begging for help. Either to help the circumstances change or that we will be strong enough to endure whatever else is thrown at us.
Regardless, we know we are not alone. The Savior loves us. And although this is so hard and it feels as if the trials are piling on quicker than we can even cope and get our heads around. The one before is still swimming in our minds and has knocked us flat and the next one hits as we try to lift our head. Yet. We know we are not alone. We have had help from our Savior each and every step of the way. And we know whatever we are asked to face, He will walk with us. He will carry us, He will lead the way and He will strengthen us so we can bear up our burdens with ease.
And although my heart feels like it may break in half and that the world has trampled it raw, I will not give up this fight. I will continue to give my all. I will continue to praise God and my Savior. If they have faith in me that I can endure, somehow, someway, I will continue to keep walking, going, fighting and surviving.