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.

One on One Date with Mom

I took the kids that wanted to go with me to look at the store of some toys they were interested in. We do no have cable TV, so they do not see any commericals. I took pictures of the items they said they wanted. We talked about the items they wanted and hoped for.  I loved seeing the joy on their faces.  Afterwards, we went to my favorite frozen yogurt shop called Yogurt Kingdom. I enjoyed spending time with them and getting a good idea of what they wanted for Christmas.  When it comes to dessert, my kids tummies are always hungry and they struggle with a good serving size. Thank you Yogurt Kingdom, It was delicious! 💗

Coyotes Game with Hopekids

We attended the Coyotes Game through Hopekids. It was so nice to be in a suite. With Levi having special needs, not understanding his boundaries and not being able to sit still, sitting in a stadium seat is unbearable. We were fortunate enough to be in a suite, plenty of leg room and the choice to be able to move whenever we want is another plus. We came and thought we were prepped and going to have a good time. As the game started, I looked over to check on Levi and this is what he was doing.  I did not know that every time a goal is made, the lights flash and the stadium rings a bell. Flashing lights and loud sounds trigger seizures, so I had to cover his eyes every time. 

My son was overstimulated, cold, and couldn't handle the noise. He was using his brothers' jacket to muffle the noise over his hooded jacket. He was curled up and starting to shut down. When I took him to the bathroom with me, for a movement break, he was sitting in the corner of the bathroom stall in a fetal position, covering his ears and whining. I called Aaron, explained what was happening. I couldn't believe how sad this was to him. I have never been to the coyotes game, so I didn't know what to expect. I wasn't prepared. I felt awful. Aaron went to one of the security guards explaining he needed ear buds to cancel out the noise for our special needs boy. Those foam ear buds did the trick. He was back to himself, eating snacks provided in the suite and watching Jack Frost on the TV. 

Our niece Ashlynn came because Brayden was not feeling good and we needed to fill that ticket spot. We are so lucky she came. She and Brooklyn enjoyed each others company and were fun to watch as they tried to get on the Jumbo-tron.

Thanks Hopekids for giving us this opportunity to go. We appreciate it.

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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How To Manage Stress

Being an advocate and caregiver for my Levi is so much work, at a lot of times it is pure exhaustion! I deeply love being a Mother to each of my children. I am SO very grateful for the opportunity for me to be a Stay at Home Mom. I am busy with my own dreams and goals, as well as running the household. I am slammed when the kids arrive home from school. It is so important to me and Aaron that I have enough time to manage my stress. Raising as many kids as I have AND having a child with Special Needs, adds A LOT of stress to my life. I have created a list that works wonders for me.

This will make you smile.  :)

(Levi is eating his favorite snack- Raw Broccoli)

How To Manage Stress

• Exercise 

Exercise takes energy that is hard to get when you are drained. I add a little pre-workout caffeine to my body daily routine and I am able to get to the gym. I actually enjoy walking on the treadmill and lifting weights. I feel like a warrior once I complete my workout. I am always less stressed and if I had a headache, it is always gone. I am in a better mood and depression subsides when I workout. I strive to workout daily.  

• Deep Breaths

You can do deep breaths anywhere and it works! I have to breathe deep when someone cuts me off the road. I have to take deep breaths when I need to "bite my lip". It helps me process my emotions and thoughts more clearer. You cannot take back when you didn't mean to say, even if you are truly sorry.  Breathing Deeply helps improve digestion, De-stress and feel energized. These factors go on high alert when you are stressed. 

• Hot Baths/Showers

I LOVE taking hot baths and showers, although I prefer baths over showers. I always feel so relaxed and calm after I soak in the bath for at least 20 minutes. In my opinion, you have to set the mood just right so you will enjoy it too. I use Epsom Salt with Lavendar oil and turn the lights off. I fill the bath water as high as I can and have the temperature as hot as I can stand it and be comfortable. I sometimes listen to soothing music or a podcast I enjoy. I sometimes will read through a magazine or a book. You can light a good smelling candle. You can also add essential oils and bubbles.

• Sleep

I cannot stress this enough! Nap whenever you can. If you are like me, you will see me staying up late trying to catch up on my daily assignments I couldn't get through and tidying up the house before bed. I am a night owl, but I do take naps whenever I can.  It's almost like having a newborn...sleep when kids sleep. But for reals!

• Pray

I believe in God. I believe in the power of Prayer. I believe that Heavenly Father listens to me whether I am happy or sad. I believe he answers my prayers. I pray often. I usually am always praying for strength, safety and help. I do also pray in gratitude to my Heavenly Father for appreciation for staying at home with my children, being a mother and for the many blessings I have.

• Journal

I choose to journal my thoughts on this blog. It is very therapeutic to me. I also sometimes journal my inner most feelings that I don't share with anyone in a hardbound book I keep in my nightstand. Mostly, it is just a diary of my day as well as questions I am searching for myself and writing out to Heavenly Father. 

• Read

I am a big book reader, when I get a good book I am into. I love Non-fiction books, Mysteries, Trauma & Survival. I am learning to love the Book of Mormon. I listen to my personal scripture study online through my phone while I am multi-tasking at home. I comprehend the scriptures better. Regardless of you choice of book, it is nice to sit and read, feel calm and relaxed.

How to Treat a Special Needs Child

  (At the Dinosaur Exhibit while visiting the Phoenix Zoo)

Treating Special Needs Children is not something you just know, for most. It is something you Learn. Some people are nervous of how to treat and talk to a child with Special Needs. Some people are nervous of saying the wrong thing. If you've been wondering how to talk and treat a Special Needs Child or a child that has Special Needs, look at their siblings and parents, they are the best example. We know we aren't the perfect examples, because we are all human and their siblings are kids as well, they are growing and learning too.

(Learning about Fossils while visiting the Phoenix Zoo)

Things to know that never is okay:

• Talking rude to child
• Shaming child
• Cutting child off in mid-sentence
• Ignoring them, not talking to them
• Teasing, laughing at them 
• Making the child feel like their feelings do not matter.

Special Needs Children are extra sensitive and pick up on when someone doesn't like them, when someone doesn't care about them, and when someone is making fun of them. 

It is very frustrating as a parent and siblings when children & Adults ignore the child with Special Needs. As a parent, I am quick to address my own children to treat Levi nice and to remind them to be an example to their friends.  Now my children are not perfect at this, but we strive to help others understand and help Levi feel accepted. 

As I type this, it is also hard for me to say that it is difficult to teach other children how to be nice to Levi who has Special Needs. I sometimes have to correct how to treat and speak to Levi with other kids who do not understand. I do this, because I am Levi's advocate and he cannot do this for himself. I do this, because he is a spirit from Heaven and one of Heavenly Father's children. Lastly, I do this because I love him and want him to be treated with Love.

Patience is Key when working with children, but especially when working with Special Needs children or children who have Special Needs. My husband Aaron is always a huge example to me with his patience! He has been patient with me when we were dating, through my bride-zilla moments as we were planning our wedding, and with each child we brought into the home. When stress rises, he is extra patient and reminds me to be more patient. I know that everyone doesn't mean to offend, we know that. We aren't perfect with our patience either. It is important to work together and know that with time and patience we can help children with Special Needs feel comfort, acceptance and Love. 

"Thou didst bear all these things with patience because the Lord was with thee."

 Alma 38:4-5.

"Continue in patience until ye are perfected. " 

D&C 67:13

"Jesus said unto him, Thou shalt love the Lord thy God with all thy heart, and with all thy soul, and with all thy mind."

Matthew 22:37