Seeing Hope Again...

Everyone in our family has been affected by Levi's medical conditions. The kids and I have PTSD really bad from witnessing Levi go into Grand-mal seizures multiple times a day. On Christmas, he endured 7 Grand-mals, on top of the milder seizures, resulting in many more. Once your child has so many seizures back to back, day and day, gets ambulanced and stops connecting with you or with anyone for that matter, you are so traumatized by it you start to shut down. It is so SAD and HARD to watch all your children witness their baby brother almost die daily. When he has seizures, he holds his breath and cannot control himself to stop seizing. He falls completely limp to the ground, sometimes vomits and sometimes has an incontinence. He is completely lethargic and unresponsive. Once his seizure stops, he will sleep for 45 minutes- 5 hours.

Our home does revolve around Levi, our life does! We have therapies in our home coming right now 4 times a week, helpers that we call friends every week day, sometimes on weekends. We cannot have a lot of chaos, stress, yelling, loud music, messed up schedule as this all resorts Levi to have a seizure. It is so stressful to run a household to meet these standards, and that is just for one special needs child. I have 4 other typical children that I need to pay attention to and spend time with.

When I share my stories about the trauma we have been through with Levi, when I share just a glimpse of what the hell we have been through, everyone's jaws drop and I can read it all over their faces that they cannot believe it. I then stop sharing the raw and realistic details of our story with Levi and my other children, because I don't think many people can understand or wrap their head around what trauma we have all been through. I usually say "We are doing good," "I am fine," or "Levi is doing good." I mask over what really is going on and make it sound like everything is okay. It might be okay in that moment, but we do not go a whole day without Levi or someone else that has had a rough day.

I learned today that I put up walls, and I know I do this, I just didn't realize that everyone else knew I did this. I do this to protect myself from showing complete emotional break downs and to protect my heart. I remember about 4 months ago, I had a complete break down and was spiraling down hill, actually hit rock bottom. I couldn't see myself going another day praying and scared to death if my poor Levi was going to have a grand-mal throughout the night and not know, and possibly die. I could not see myself not being able to leave my house, in fear that Levi would have a grand-mal seizure in front of a crowd (this has happened before at Costco with Aaron and it was scary) and I wouldn't be able to lift him up and carry him to safety. I couldn't keep facing the constant failures that modern medication was doing for Levi. I did not want my life like this and I did not recognize me anymore. I cried for DAYS and DAYS and prayed to God, then was mad at God. Then hated church and became a hermit who started not caring for herself.

After talking to a friend, I decided to go talk to a doctor because hurting myself was not the solution and I knew that I was sick. I knew that my hormone levels weren't correct, because who would think like this and treat themselves the way I was doing. After getting on an anti-depressant medication I saw positive shifts in me after 3 days. It still took weeks to get me to the correct dosage of it being effective. Since spiraling down hill, my health has been put through the ringer and I have many health problems that my doctors cannot give me a medical diagnosis explaining my sickness. This is my journey to find out what my diagnosis' are, but this is all from living in constant fear, stress, high cortisol levels that remain extremely high for long periods of time, and pushing myself aside.

I am learning that as a Mother you put yourself on the back burner and put everyone in front of your own needs. This is doable for a short period of time, but it is not realistic, nor it is achievable. I did this for Months on end that ended up being YEARS of putting everyone elses's needs before my own...and I completely crumbled and fell apart. Ironic right?! This was sitting in my draft copy on Feb. 20, 2020...now it is the end of 2020 and our year  is so different now. Most importantly, I am learning about Grief, how it never goes away, but you learn to manage it differently. You grow from that old friend that won't go away (grief) and how to continue to live with it. My goal this year is to find me again, love her and be nice to her. Find what I love, be a good mom and stop making unrealistic goals that I keep from achieving. I am GOOD! I am a good person and I am ENOUGH!!!

Brooklyn's Winter Performance

Brooklyn is in Social Dance at school, as part of her P.E. credit. She tried out for the winter performance and made it. She had devoted a lot of her time for practice after school, during class and at home. She enjoyed every minute of being on stage and performing. We are so proud of her hard work and desire to try out.

(Brooklyn & her best friend CeCe)

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! 💗

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