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. 

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!!!