Triggers

                                                    (pictures from our doctor appointment)

Yearly Appointments, we all know what these are. You go to your doctor, see how much you've grown and how tall you are and find out how much you weight, etc. For a special needs child who relies on the state for support and help. For Levi, these appointments are very important and we come prepared as much as possible.  These appointments always stress me out, they use to  be worse because the doctor would always push immunizations on me, argue with me, and still I would have to jump through hoops to get what we needed. 

This last Wednesday I was going through our binder to make sure everything was  updated and accurate. I ran across Levi's old IEP from his kindergarten year, when everything went down hill for Levi. My heart stopped, I just froze and felt immediately sick. I tossed the IEP to the other side of the room, knowing I was going to have to tackle it later, but I just couldn't think about it at that very moment. 

Let's recap how kindergarten was for Levi. We had transferred over to a Charter School and for once I had all my kids going to the same school. It was nice, until things with Levi went rocky. I met with the Special Education teacher and had her go over Levi's IEP and see if she had any tips. She told me that Levi would academically struggle, but the school had a special needs program and it would be implemented where needed. I didn't want to go back to the public school we just left because they had graduated Levi out of the special needs class, against what Aaron and I felt or wanted for Levi. The public school wasn't listening to us and was just pushing him out of what we knew would be the best option for Levi. We felt unsupported and felt like the school just wanted to do what they wanted, and they did. I didn't know much about how the IEP worked at that time, this was the starting point of when I learned to do my research, hold my ground and learn how I was. 

After I met with the Special Education teacher, Aaron and I prayed about it and felt strongly that putting our kids in the charter school was the best decision. I want to make note that this was still the best decision for my typical kids, and we haven't changed our mind since, yep they are still at the charter school. Things started to escalate pretty quickly. They knew that Levi had seizures, it was well documented in his IEP, but they weren't severe like they are now. The school and teacher didn't know that there were different types of seizures, they didn't know what to look out for. I had to point it out to them every time, teach them. That was something I didn't realize others who don't live life with seizures, don't pick up on. There was one day when Levi full on had a 20 minute melt down before school REFUSING to go to school. I knew something was terribly wrong because he had never done that before. I went to the school, unexpected, and wanted to see for myself what was going on. I realized then and there the paraprofessional was triggering his seizures by putting stress on him. Then when he was having a seizure, she did nothing to support him, and during his postictal state, he was being punished for his reactions that he couldn't control. The school wasn't following the IEP like I kept requesting, I ended up having to be in the class every day until we wrote the IEP and then we left the school. 

I learned in these meetings with the school staff, school district and our Advocate, we spent hundreds of dollars and I learned how an IEP works, that my opinion matters and I am part of the team. I also learned that I don't have to sign anything I don't agree with. I learned that I am strong and resilient and a hard worker. I learned how to read IEP's and where there were concerns and when things needed to be re-worded. Looking back on his kindergarten year at the Charter School was a nightmare that I NEVER want to ever repeat again, but I certainly learned a lot of who I was, who I was meant to be me, why Levi was sent to me, and that I could overcome these triggers.  

I ended up working on the IEP that I tossed over the to the other side of the room. I braced myself, said a little prayer to my Heavenly Father asking for help that I wouldn't break down. I am grateful for my Heavenly Father's help, I was able to to work on the IEP from the charter school where we had year of a nightmare and hope and pray we never have to repeat again. Levi's yearly appt on Thursday morning went great and smooth. We got the scripts written for therapies we need weekly, medical equipment we use daily, and referrals to get testing completed with other specialists. No stressful events, so pushing and arguing with me. Thankful for good doctors who trust us parents with intuition and the amount of hard work we put into our everyday lives for our typical children and our special needs children.  

While I keep navigating this road, we will continue to have triggers and will need to keep moving forward and help others as well as heal our hearts along the way. 

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.

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.

Movie Under the Stars

Through Hopekids we were able to attend a Movie Under the Stars and watch Incredibles 2 outdoors. It was a movie I couldn't bring Levi to, as it has several scenes with flashing lights that will trigger seizures. We were fed cotton candy, popcorn, pizza, fruit snacks, soda & water. Then given glow sticks and light up fidget spinners.

We brought our own chairs and blankets. It was actually really cold and I am so glad I dressed warm. I am glad that my teenagers came and enjoyed the fun movie and food. I am glad that we have the opportunity from Hopekids to enjoy fun events that we can bond and make memories as a family.

Sibling Love

On Veterans day, we went to the zoo. It was packed with so many veterans and kids and it was fun. I had my whole family there and loved it. At the end of our trip, we were walking out but saw these beautiful pelicans. Mckay and Levi's relationship has grown tremendously and still needs improvement, who doesn't need improvement? Levi now hugs and kisses Mckay when he is happy and wants to share that love and happiness with him. It is so cute to watch and know that they are building their relationship.

Mckay and Levi LOVE to sleep in Brooklyns' room. Our rule is only on weekends, this is allowed because they play and don't get as much sleep as they would sleeping in their own beds. This paticular night, Aaron and I were on a date. Brooklyn called us in a panic that Levi had a seizure in his sleep. He woke up, said he had a seizure and whined. Brooklyn prayed to Heavenly Father to ask Levi to stop having a seizure. Levi did stop and then said he wanted to go back to bed.  I am forever grateful that Brooklyn was there to help when I could not. It was a bonding moment in her life and I have seen Brooklyn change for the better. 

I wanted to share the love my children have towards their brother Levi. Levi is very hard at a lot of times, and even when we struggle and have a rough day, at the end of the day, we still love and appreciate Levi. I know I do not give my children enough credit of how much I appreciate them. I try to improve where I am struggling. Brooklyn, my daughter has told me lately how she wants to work at Hopekids Foundation and wants to have a special needs child, preferrably a Down Syndrome Child. I have never heard of any teenager plan to have or want a special needs child for their life. I KNOW that she is learning to love everyone from all backgrounds and all needs in life. I KNOW that she is paying attention and trying to be close to Heavenly Father. She is an example to me. She teaches me new things every day. 

On this particular day, I took Tanner, Mckay and Levi to a Hopekids event at Sea life Aquarium and LegoLand Discovery Center in Tempe. The boys were counting down the days and was so excited. It was also a stressful day. After a long full day at school, Levi is tired and overwhelmed. He usually has between 5-7 seizures at school, not including what he has at home. Overstimulating him causes more seizures, which makes it challenging at these fun events. With Levi's special needs, he doesn't pick up on social cues and boundaries. This is another challenge that we have to maneuver through, daily. The boys are learning to communicate and bond with Levi. It is so nice to see them work together and get along. 

I just wanted to remember the growth of my children bonding and building their relationship with Levi. Not everyday is stressful, we have many good days, but they all take a lot of work. We are forever grateful for having Hopekids in our life. It makes us bond and look forward to really cool events. 

Special Needs Siblings- What Life is really like

As you know I have 5 children, 4 of them are "normal". Which simply means they do not have Special Needs. The siblings to a child with Special Needs has a lot of work on their plates. They have to adjust to a schedule and life they didn't choose. They have to help care for a Special Needs sibling, which is stressful and exhausting. My kids have to put their feelings aside and realize that their brother Levi can't handle the excitement, questions and interactions they want from him. They have to adjust that our lives aren't like their friends and we can't always do everything their friends' families can do. It has been so very tiring and exhausting on my other children. I see it everyday in their faces, in their behavior at home and when they explain their feelings to me.

(Tanner, Mckay, & Levi cashing in their free personal pan pizzas for good grades)

I have created a list of 5 ways to help Support Siblings of a Special Needs:

1.) Tell the siblings in words how you appreciate them.
I know I do not do this as often as I would like. I know that they need it more then I have expressed to them. My children are a HUGE help in my daily life, even the smallest tasks aren't over looked. Sometimes I forget to tell my children how much I appreciate them. I know that when I express my appreciation to them in details they love it.  I simply say things like "Thank you so much for making Levi a snack after school. I really appreciate you for serving your brother."


2.) Apologize that their schedules are chaotic.
It is not fair to the siblings schedule to be chaotic. They did not choose to have a brother with special needs and they did not choose that our schedules really have to revolve a lot around Levi. It's not fair to them and they need to hear that. I want them to know that I agree it isn't fair and I appreciate them for trying to adjust.  I have simply said "I am sorry our schedule is chaotic and stressful. I can tell you don't appreciate it and it stresses you out. I appreciate you for trying your best."

(At a Private Screening for Incredible 2 with our Orthodontist)

Tanner, Mckay, Levi, & Me

(Brayden & Levi spending time together after school)

3.) Spend One on One Time with Each Child.
I cannot stress this enough! When you have a Special Needs child in the home, your other children tend to get pushed to the side, because you are so busy being an advocate to your Special Needs child. It is not fair to them that you are exhausted and drained. It is not fair to them that you are overwhelmed and don't have enough time for them. They need that connection and love from you. What works best in our home is to schedule time out on the calendar. We agree on a date and time that works best for both of our schedules. Then we plan out what we are going to do.  Sometimes we watch a movie together, kids choice. Sometimes we play card games or board games together, kids choice. Sometimes we go shopping together and go out to lunch, listen to the kids talk about their day or vent.  How I get them to hang out with me, I simply say "Hey Brayden, I know I don't spend enough time with you, can you look at your schedule and I will take you out to lunch? What day works for you? Where do you want to go?"

(Aaron & Mckay at the Diamond Backs game- we were given 2 free tickets from Grandma)

4.) Connect with your children.
 I try to reach out to my children, one on one and let them know how much I appreciate them. I do not get the chance to do this everyday, but I try my best to speak to them with kind words. Give your children hugs, kisses on cheeks, words of appreciation, pats on their backs and smile at them.  When I do these things with my children, I can already tell they feel appreciated and loved. I give my teenagers Brayden & Brooklyn and well as my younger boys hugs and tell him how much I love him. When I talk to them in a kind heart and loving tone, they never push me back. My children have stressful lives at school and at home, I don't want them to ever feel like they aren't loved or not appreciated. I have said "Hey Brooklyn, How was your day at school? What was your favorite part at school today?"  "Brayden, what's your plans this weekend?"

(Brayden sleeps a lot in the car. I decided to snap pictures at every chance I get)

5.) Check in with them daily. 
Ask them about their day. Go through their schedule with them. I always tell my children that I love them before they leave for School. We strive to have prayers and scripture study before school (it doesn't always happen).  We carpool to school right now, and when I pick up, I welcome my children and carpool buddy in the car and listen to them telling me about their day on the way home. I ask about upcoming games they are playing in, I ask about upcoming tests and ask if I can help them study. I ask them how school was. I feel like it is always important to check in on my children and make sure they are okay. I want them to feel like their feelings and life matters, even though I have a busy schedule. I can make time for a check in.

Your children will feel loved even if you can do this checklist once a week. They want and need to feel that connection with you. It is something, us humans crave. Do your best! They will appreciate you for trying and asking.

A Special Needs Family

Looking at a family who has a child with special needs looks a bit different then you'd think I bet. Special needs children have different disabilities, some look "normal" and some do not. Some are capable of having full mobility and some get cool wheelchairs to stroll through life.  What you don't see is behind closed doors, especially if the family has other children that are "normal". What you don't see is a life they didn't prepare for or expect for their future.

My husband Aaron and I work tirelessly and serve with all our energy all day long out of love for our children. We do research, pray and fasting and search for answers for our family. We work all day long to tend to all of our children's needs and devote time to them.

Once you devote more time and energy to your child with special needs, you will find that your "normal" children will feel left out and get pushed to the side. You don't do this on purpose at all, it just happens and it's not fair. My "normal" children have to adjust to having a more "zombie Mom" who runs out of energy extremely fast. They have to adjust to lots of doctor appointments, babysitting their siblings a lot more then usual, even when they don't want to. They have to adjust to a more busier and chaotic schedule, a messy and stressed out house. It's not their faults, they don't get a choice, and it's not fair.

What we parents get in return is more melt downs, crying children, arguing and tired children all. the. time. Our house is never clean and I have learned to let that go! What I think is important to learn from this is if you've been wondering how to help someone in your church, on your street, or a friend that has a special needs child is to just love them. Pray for them and love them.

(Mckay, Levi and Brooklyn sleeping in Brooklyn's room. This night Brooklyn was able to help Levi after he woke up from having a seizure in the middle of the night. She was able to help get him back to sleep. I am so thankful that she was able to be there for Levi.)

If you want to help alleviate the work for the friend/ family member, here is a list that has worked miracles in our family:

* Pray & fast for the family. It is free and it works.

*Bring in Dinners. Arrange with parent on days that work best. 

This will take one stressful thing off the parents to do list.

*Drop a treat by randomly for the family to enjoy. 

This lets the family know you are thinking about them.

*Text the friend letting them know you are thinking about them. 

*Ask the family to a park date. Have your family there too and just hang out and talk.

*Ask the Mom out for a Girls Night Out.

 It is pretty isolating when you are a parent to a special needs child.

*Drop off money donations or gift cards. 

You would be shocked at how much money is spent on medical bills, doctor appointments, medication, surgery, therapy, etc. 

*DO NOT make empty promises!!

This is the most disappointing and heart wrenching item that is so hard to look past!

How To Interact with a Special Needs Child

You might have a friend or a family member that has a child with Special Needs. You might feel disconnected with their life and want to try to feel the gaps with trying to be in their lives more. You might feel like you’re not sure what to do, but you want to help. I promise if you ask the parents of the Special Needs child how to help, they will give you the best advice of how to connect with the child, because they live this life every day. I promise if you ask with a kind heart and soft words, your love will feel appreciated. We as parents, can give you tips and advice that has worked with Levi and most likely will work for you too. I have created a list that works at our house. We use this same list when the siblings talk with Levi and when we want to interact with Levi.

(We are by the Lion's Gate at the Phoenix Zoo)

Please understand that a Special Needs child will not accommodate to you, and adjust to what you need. You are the adult and you will need to accommodate to the child. This is not a request that works for the adult, it simply is what works for the child.

*Ask the child how they’re doing today. 

“Hi Levi, how was your day today?”

*Ask the child if they have a favorite stuffed animal. 

“Levi, I heard your favorite stuffed animal is named Stuffy. Can you show me him?”

*Ask the child what their favorite toy is. Ask them to show you the toy.

 “Levi, I heard you love trains. Can you show them to me?”

*Sit down and speak to them at their eye level, show you care with a loving tone of voice. 

Be patient and listen to them.

*If they have a pet, ask them about their pet. 

“Levi, I heard you have two turtles. Can you show me them?” 

“Oh he is so cute, I bet he makes you happy.”

Please keep in mind that children with Special Needs gets over stimulated easily and can have melt downs. They might not answer you when you’re wanting feedback right away. Be patient and try again.  Make sure not to pry too much, there is a fine line before you over stimulate them. If you want to interact with them, play with them. It could look like building legos together, tossing a squishy ball together, playing with trains together. Ask the parents for more ideas. Trust me, it will mean the world to the child if you play with them. It will help heal hard hearts, it will make you feel good that you served the family, and it will make the child feel so happy.

(Brayden is carrying Levi around on Christmas Eve when we visited the Temple Lights. Do you see that smile on Levi's face, he is so happy).

"But love ye your enemies, and do good, and lend, hoping for nothing again; and your reward shall be great, and ye shall be the children of the Highest..."

Luke 6:35

"Thou shalt not avenge, nor bear any grudge against the children of thy people, but thou shalt love thy neighbour as thyself: I am the Lord".

Leviticus 19:18

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

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!