Self Care, Crying, And Goals...

I found a few gray hairs on my head and my eyebrows and decided to go all brown. I know I am getting old and I am supposed to age. I know the process is going to happen whether I like it or not. I do not feel I am ready to have gray hairs on my head, at the age of 36. I am totally going to have loads of fun with my hair as I age, because I am only going to be aging once. P.s. I love my dark hair!

Since September 2018, Levi's medical condition and delays have increased tremendously. We have been so busy with making appointments, attending all the appointments related to doctors, school and our advocate. We are doing all this on top of our normal work load. Stress has been to the MAX and we are getting about 3-5 hours of sleep each night. It is totally and completely exhausting. We do not feel like we can ever catch up. The best words I can describe my feelings is "I feel like I am drowning". As you can see Levi was taking pictures of me sleeping while watching his show. Levi doesn't actually fall asleep when we'd like him to and wakes up really early. We know that's not enough sleep for him or us, however there is nothing we can do to change it.

With Levi's delays, he doesn't understand the time of day and how much sleep he needs. He doesn't nap anymore and won't go back to bed like any of my other kids. When he is up, he is up. Due to his seizures and delays, that means one of us has to be up with him regardless if we want to be up or not. Someone needs to help him as he needs help in eating, getting dressed, seizure safety. Levi doesn't sleep in and he sticks to a schedule everyday. Every Mom knows that you aren't really asleep when you have a child next to you, it's just a quick shut eye.

 (Pretty sure it was around 6am on a Saturday Morning)

Talking about Self care, being a care giver for your own child and not having help from the state means you NEVER get a break. Some days are easier then others, but you hardly have a chance to yourself. You can't nap whenever you want or shower whenever you want, or alone. When you run errands, 95% of the time, you have a buddy to tag along with. This isn't usually easy and takes motivation to getting Levi out the door.

When we have been devoting 100% of our time to Levi and his medical needs, our children and our normal routine and task load, we do not spend time on ourselves. There are lots of days I seem to look like I have myself pulled together. There are lots of days when I do not and I look like a hot mess. On this particular day, I remember it well. I was struggling with being a hands on Mom to everyone! I was struggling to getting our house in order, staying on top of my daily responsibilities and To- Do List.  I was letting my OCD over ride my life. I had to learn to be nice to myself and let things go! This is SO hard for me to do.  I was really frustrated with what life had given me.  I broke free (which just means I left the house by myself) and hit up Soda Rush (a cookie & soda shop by my house) and blasted my favorite music ever and just ran errands and cried. I cried a lot!

But then I pulled myself together again and decided to try again, because the other option is giving up and that is not a choice. I decided to make some goals for myself and be realistic about them. I was in constant turmoil as I was trying to fix things and things weren't going according to MY plan. You see I am stubborn and I am fixer and solver. I am a big believer in not "pushing things under the rug". If there is a problem, let's solve it.

We were getting ready for our BIG IEP meeting at the school for Levi. At these meetings, I have the big dogs in my meetings and there are a lot of people. We have our advocate with us, the CEO of Academics, the SpEd department, Principal, Assistant Principal, Therapists, Nurse, District Nurse, School Psychologist, and you get the idea. During this meeting, we go over goals, services, and an overview of minutes and what to expect for Levi everyday.

A couple days before this meeting, I had a dream,  I remember talking with an old man who was kind and gentle. He was referring back to a scripture and said " It's just like in 1 Nephi 18:21"...then I woke up. I immediately read the scripture. It reads:  "And it came to pass after they had loosed me, behold, I took the compass, and it did work whither I desired it. And it came to pass that I prayed unto the Lord; and after I had prayed the winds did cease, and the storm did cease, and there was a great calm."

It is about being calm and having peace, trusting in the Lord. Knowing that it will work out. I felt like it couldn't have come in a better time. I definitely have not had my full trust in the Lord, being frustrated that things weren't going the way I had expected. Trying to fix everything so it will all work out.  I was calm and slept well that night. I was calm going into the meeting with Aaron and our advocate. We were prepared and we were ready.

My goals for myself is to workout at least 5 days a week. I do this for myself. I am a much happier and relaxed person when I work out. I have gain what I like to call "Stress Weight" and it is not fun! It is so hard to loose and dedicate time for me BUT it is SO so worth it! I also am praying and relying more on the lord. I need more peace in my life and house. I have constant examples who help me redirect and help me to focus on what's more important. I have also decided to not be so strict and be more fun. I get stressed really easy and I miss being adventurous and having lots of energy and fun. I am certainly not perfect, but I have accepted my life and my trials. I am trying to be the best me so I can be the best for my family.

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VNS Surgery & Recovery

(Levi is in recovery room, post surgery. That teddy bear is like "Buddy" in this story. The teddy bear has a pocket inside his shirt so there  device can be in the same place as Levi. Levi is the only person we know that has the VNS device. It was important that he had a friend that was just like him. )

When Levi’s seizures got worse and he started complaining of headaches, we knew we needed to do something more. Levi has failed 4 medications and all the medications did not stop his seizures. The medications did stop his motor skills, cognitive ability and communication skills. We lost our communicative little boy when he was on medication.  The neurologist gave us options because Levi was in pain and his seizures were changing and increasing. We looked into the VNS surgery and did a lot of research for weeks. We prayed, fasted and prayed some more about the device. We were told nothing but good results from the device. We read all the side effects and still felt good about this path. We had a 50% chance that it would work and from talking with everyone, it was either going to help or not harm him. Levi had the surgery on Dec. 17, 2018. Levi did well during surgery and he did well post surgery recovering at home.

(Levi is in a sling as the device and wires heal, his arm was to be "resting". Later we found out that was not needed and they don't normally use a sling after this type of surgery).

We were instructed to use the magnet when we saw Levi in a seizure. We were already seeing good results with having the device in, in a short period of time. Levi was sleeping better and waking up happy (something he literally never did for years). The device was pulling Levi out of his epilepsy spasms and twitches. Levi refers to the device as “Buddy” and knew he was helping Levi with his seizures. One day, right before Christmas, I was wrapping presents in my room and Levi was having a hard seizure and the magnet was not pulling him out of the seizure, Levi then threw up and was lethargic. Levi started have different seizures and they were scarier. After a couple of days of his seizures increasing and Levi vomiting. He started acting different again. His scary and hard seizures we changing from bearing down to eyes rolling behind his head, lethargic, chewing, limbs going limp and then passing out and sleeping for 2+ hours. Sometimes he would groan through the seizure and sometimes he would vomit. We had to prepare rescue meds a couple of times because his seizure was hard and long. There was a time when he started shaking and his limbs were stiff straight. There was another time when Levi had a seizure and fell off the computer bench and landed on his head on the tile, then passed out. I am telling you, these were SCARY!

Aaron called the VNS company and explained what was happening and their response was it was not normal and not heard of, we needed to call our neurologist. Aaron called the neurologist and then we had a follow up appointment and Levi had one of those hard and scary seizures. We were told it was a myoclonic seizure. We were instructed to not use the magnet anymore and see how that works. We did just that, but then Levi passed out at school and almost passed out on the playground. Thankfully we have the paraprofessional in place so she was there along with his kindergarten teacher to help catch him so he didn't fall off the playground set. Once, he had to get wheeled out to the nurses office because he was so lethargic from having those hard and scary seizures. We then ended up turning off “Buddy” and have still seen those hard and scary seizures, sometimes, just not as often. Levi doesn’t talk about “Buddy” anymore, except when we ask him if "Buddy" hurts. Our neurologist explained that this side effect of the VNS device that Levi has been experiencing has NEVER been heard of. There is no medical documentation of this EVER happening. Levi is literally one in a million. He also has no explanation of why this happened. He suggested that we move onto another option and try to continue to help Levi and try to get the seizures under control so he can stop being in pain, recover and be an active little boy again. 

I was so frustrated and mad that we went down this path, why we felt good about going down this path and what was I supposed to learn from it. I couldn’t understand why we were led down this horrible path. I was talking with a friend about this, who has a daughter with special needs, and she said “You wouldn’t know if this was the best option unless you tried it. You would always be wondering if it would have helped if you never tried it”.  I was expressing my frustration to a close friend about this and she told me of an LDS talk that was a similar situation of mine. The story was the Dad and son were out shooting guns in the desert, once the sun went down they started heading home and couldn’t remember which path to go down as they reached a fork in the road. They both prayed and felt strongly to go down the path on the right. As they drove about 400 feet, the road stopped and they had to turn around and knew the other path was the correct path. The son had asked his Dad why they felt good about going down the wrong path. His Dad replied they wouldn’t have known that this was the correct path if they hadn’t went down the wrong path to begin with.

 After hearing about this story and talking with my friends, I now feel like I finally understand why we felt strongly to get the VNS device. This wasn’t the correct path for Levi, he did not have a good results from it. After going down this horrible path, we were led to trying out new medication and hopefully getting better answers, better results and more help for our Levi. We also MIGHT try the VNS device one more time. The reason why is, there is no one else who has ever had this side effect, if Levi has the same reaction again as he did the first time, he will be put in a medical journal. He will be able to help other children and adults that go down this path too. It will be listed as one of the side effects. He will be able to help others. Right now, Aaron and I are not emotionally ready to try this again. We will have the VNS device removed later this year, if it continues to cause problems and not help Levi.  More on that later, as we progress down that road. 

For now, please pray for us and Levi. Having been down this road gives me a new perspective on judging others. I had no idea how hard it was to have a special needs child and a child with so many medical conditions. I had no idea how difficult it was on the individual and the parents. We never get a break and Levi has to constantly be watched 100% of the time.  I didn't realize that having one child with this complex medical conditions would make such an impact to the rest of the family. Our children currently don't have enough Mom and Dad time. Our time is so consumed with Levi, we don't have enough hours or energy in the day to spend with our other four children. I miss being able to be crafty, creative and working on fun projects. I miss being able to binge watch TV shows and having a clean house most of the time. I miss being able to sleep 6+ hours each night. I miss being able to take a nap when I want and being more relaxed and at one time, I recall I felt bored a few months ago. We just need prayers, love and compassion. This is HARD and we are doing the best we can.

Hopekids Pizza & Cake

We attended a Pizza and Cake event with Hopekids. We never really know what to expect at each event, whether it be school, church or family event with Levi. We are so glad we went. It was a great opportunity for us to bond with Levi and Mckay one on one. Since Levi requires so much attention, my other kids have been receiving less attention and they are struggling.  The pizza was delicious and we each made our own.  The kids also decorated their own cupcakes and ate them. 

Since being on their journey with Levi having Epilepsy and Special Needs, how his Epilepsy isn't going away or getting better we have been struggling. For me, I have been so isolated and not having another person to turn to that has already been down this road. Levi wanted to go outside and run around. Aaron was outside and talking with other Moms' about how Levi is getting ready for the VNS (Vagus Nerve Stimulator) surgery and how we have been so worried. This Mom he was talking to, said she had a niece who had it. She said how she saw a difference in her seizures and her life. We have NEVER had anyone to turn to for something like this. This was a glimmer of hope that I was leading in the right direction. This road has been so hard already, but I am starting to see small glimmer of hopes that I am going down the correct path. 

Aaron and I both felt grateful that we were able to meet someone who had a good experience with the VNS surgery. We had hope that Levi would do okay and this surgery would help him, possibly reduce his seizures and pain that he is constantly in.

Mckay had a smile on his face the whole time. I helped him roll out his pizza dough. I helped him with his toppings. He made friends at our table and made more friends when we were outside running around with other Hopekids. We were accepted and loved, no matter our circumstances.  It was a nice time together and we are super grateful for that bonding moment to make memories together.

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A Dark Long Road...

This depressed Mama decided to go back to work part time to break away from children and have a life outside of the home in 2013. Levi was 18 months when I went back. This was the beginning of my dark long road that I wish SO much I could delete the first year of it. However, I know now that that HARD year lead me to who I am now and what I have learned. It has shaped me and is still not  easy or perfect.

We were stressed with what was on our plates, with work, the amount of children we had, our callings, etc. I was not happy and looked for happiness and feeling like a person instead of just a Mom outside of the home. We were gathered in our kitchen, it had been a long day. I looked over and saw Levi passed out in Aarons' arms, his arms and legs stiff straight completely unresponsive. We called 911. The paramedics came in and whisked him away with me in the ambulance. He stayed over night for 4 nights.  It was so scary and hard. I stayed by his side every second I could. Once he fell asleep, I quickly whisked to the snack bar and shoved food in my arm and hurried back to his room, so I could be there for him if he woke up.  I slept in that torture chamber they call a chair/bed and held him in my arms, despite what the nurses said and wanted to keep him in that huge crib that looked like a prison.

(This was the weekend we just left town, went camping on our own and went cold turkey off all seizure meds)

We followed and trusted what the neurologists said and hopped right onto giving Levi anti-seizure medications to stop the seizures from repeating. Once we were released, we stayed on that routine and follow up care, adding more medications and maxing each medication and then adding more for a whole year. He was at max dose of all four medications when we wound back at the hospital facing a helmet for my child who was pretty much a vegetable. He didn't communicate, want to be held or want to be touched. The medication never did stop my sons' seizures and we decided to go a different route. We went with an herbalist and went cold turkey off all medications and slowly came back my sweet loving Levi that I missed so much! We were seizure free for 1.5 years and doing great, until he had an accident on the trampoline and fractured his wrist. The seizures were back. This time I learned my lesson that I needed a new neurologist, because the previous one just wanted to push more medication on my boy. She didn't listen to how we felt as parents, and how much Levi regressed when he was on the medication. We continued to go the our herbalist, named Harriett. She was a life saver that restored my testimony and faith that miracles do happen.

(Levi was at the PEMU with Aaron trying to get more answers for Levi's diagnosis)

I learned that I completely hit walls and just gave up on things when I hit my 'this is too much for me to handle' mode.  I completely stopped going to the Neurologist, because I didn't like my old neurologist and we weren't on any medication. I honestly thought Levi would just grow up and get better.  I learned to just love Levi and accept him for who he is. Flash forward to August 2017,  Aaron found a new Neurologist that had many good reviews. I was frustrated of going back down this road again. I knew what I could handle and I couldn't handle more disappointment, more Dr appts that lead to unexplained seizures. Aaron took him to all his appointments and took him to the PEMU (Pediatric Epilepsy Medical Unit) and stayed with him through the whole testing. He took him to the follow up care and got everything aligned for me to do homework at home. More tests came back with unexplained seizures, but this time we had options and this Neurologist didn't push medication on us. He listened to us and examined Levi. He did speak upfront with Aaron and told him that he will always be delayed.  We took his words into consideration, but I honestly thought he would grow out of his Epilepsy.

Fast forward to him being 5, graduating Special Needs Preschool and getting ready for Kindergarten. I prayed for Heavenly Father to change Levi and bring back a "normal" child. I begged for Levi to not have these seizures and to grow out of them. I prayed many days and nights for a different life and BEGGED my Heavenly Father to him to be "fixed". A dear friend of mine just told me recently that His brain is wired with a dysfunction and he will never be "normal" . This will never go away. I will always have a special needs boy. I had to learn to accept Levi for who he is. I had then realized that Levi was sent to earth to teach me and my family a lesson. WE need to change and cater to him. He is a walking angel on earth and we need to learn from him.

(Levi, Tanner, Mckay & I went to a Hopekids event. It was Lego land Discovery Center and Sea life Aquarium)

We are still learning and still growing. We still do not have answers why Levi has Epilepsy, but we are trying our very best at helping Levi have the best life. We are trying our best to be great advocates for him. We have accepted Levi for who he is and his special needs. I am not begging Heavenly Father to "fix" Levi anymore. I am trying everyday to help our family and Levi have the best life we can. Our dark long road is not over yet, but it doesn't seem so dark anymore...I am starting to see a glimmer of light here and there and for that, it gives me hope!

A Different Vision

When I was a little girl, I had always envisioned myself of being a perfect mother to my children. I envisioned staying home, baking and teaching my kids the joy of being at home. I envisioned being happy, calm and organized. I dreamed of owning and driving a big car with lots of kids loaded inside, headed off to an adventure. I dreamed of being the perfect wife and having the perfectly clean house. I also wanted to be active in the church, a fit and fun Mom to my big car load of kids. I knew that it would be challenging, and it wouldn't always be the cookie cutter type of life, but I dreamed it would. 

I have always loved bringing each child into my home, and I love each one dearly. I never saw in my dreams that I would be struggling with my own 3rd grade math level (because Math is really hard and confusing to me) and trying to help my 3rd grader with his homework. I never envisioned I would be arguing with my children about the xbox and electronics on a daily occurance. I never envisioned the sleepless nights, staying up late trying to just get ahead and loosing my cool almost daily. I never dreamed I would look and feel like a hot mess almost daily. I never once dreamed I would feel like a failure.

Bringing each birth of a child into the home has been so memorable, sacred and loving. Something I will never, ever trade. I love being a Mom and being a homemaker. It is the most challenging jobs I have ever done! I wish kids came with an instruction manual, because it would make life so much easier.  I feel like a failure, because I can't be there 100% for all of my kids, like I envisioned. I don't give them the equal amount of time to each child, like they deserve. I don't share enough patience with each child like I should, because they need it. I still feel like I am drowning most of the time, but I am still working at my dream. I have a more realistic dream now then when I was a little girl. I know that life is not perfect, and that's okay. I am trying each day and I know my Heavenly Father knows me and knows where my heart is, and for that I think I might not be so much of a failure like I feel.

A path of bringing 5 beautiful, loving and thoughtful children to this world has been anything but perfect. Each birth was a drama-fest in itself. Brayden made his debut 3 months early being born @29 weeks gestation. He came out lethargic and drugged with the medication I was taking to stop my labor contractions. Living his first 6 weeks of life in an incubator at Phoenix Childrens' Hospital was stressful enough. Brooklyn being born a week early, but getting stuck in my birth canal and her heart rate dropping significantly.  With the umbilical cord wrapped around her neck, she came out blue and struggling to breathe. Boy, she was such a beauty! Tanner being born a week early, coming at a very stressful time. He had the best head of locks and was an angel baby but struggled with speech until 3rd grade. Mckay coming into this world a couple days over my due date, having me on bed rest and retaining too much fluid. Coming into this world with the umbilical cord wrapped around his neck three times, tighter then the Dr has ever seen it. Coming out blue and lethargic.  And Lastly, bringing Levi into this world was the hardest pregnancy, deliver and recovery I have ever had. Living in the hospital in the NICU for his first week of life due to high bilirubin levels. Struggling with speech at an early age. Soon to be diagnosed with unexplained seizures and with learning disabilities shortly following.

I still love my life. It is not what I thought my path would be. I never thought I would endure so much postpartum depression from each baby, stress and body changes in my life. I run out of energy by 4pm and then just struggle the rest of the day to make it to bed without falling asleep standing up.  I definitely have more to learn, because just when I feel like I have things figured out, life throws me a curve ball. I have never been more grateful for the trials I have learned along the way to bring each child into this world. I am happy that I still have a loving husband after all we have been through. For this, I continue to go to church (which happens to be the most stressful day of the week to me), worship my Heavenly Father, and try to be the best ME I can for my family.  I try to spend time with each child and teach them as they grow. I try to spend enough time with my husband as he has had a long day at work. We try to show by example and show what love really is.