In Nikki's Blog

Every so often in life, you meet someone that changes you. Someone that comes along when you least expect it, enters in an untraditional way and makes you realize how much better your life is because of their presence alone. You think back about how lonely you were before this person, how you didn’t even know that you needed a friend like this and you just thank God repeatedly for placing them along your journey. It’s an effortless friendship that is so natural that it almost seems too good to be true. Let me introduce you to my best friend, Jayme.

Jayme is the person above for me. Our stories with our kids are so alike that it’s almost eerily creepy in a sense but something that I promise, I can’t make up. It’s no secret to most people who know me that I have three boys that are diagnosed with Autism Spectrum Disorder. Along with Autism and genetic testing, we found out that they also have a rare heart condition called Long QT Syndrome. Autism is the way that Jayme and I connected and the reason we were able to connect so deeply. Her son, McLain James is also diagnosed with Autism and….wait for it….this is the part I can’t makeup….he also has a rare heart condition called CPVT that was found through genetic testing. Every time Jayme and I tell this story, I really don’t think people believe us. What are the odds that you go into do genetic testing in search of genes related to Autism and you find out your child has a life-threatening heart condition that will change the rest of their life forever. It honestly still blows my mind how similar our stories are.

Now that I gave you the back story of my bestie, I want to switch gears and talk about today. Today is July 16, 2020, and today I sat through a doctor’s appointment via Zoom. Thank you Corona Virus. Today, the appointment was surrounding McLain and we would learn that two additional diagnoses’ would be added to his already long list. Now, most of you who know Jayme know this, she is tough as nails and does not take “no” as an answer. She listens to hard news regarding her son and uses it as fuel to make everything in his life better. She is also the most selfless mother I have ever known. She literally devotes her life to making sure that McLain, as well as my three boys, have everything in place to be successful but most of all happy. She is a badass advocate and is someone I aspire to be like while advocating for my boys. I could go on and on about her knowledge and expertise but I will stop and get back to what this paragraph was intended to talk about and that was today’s appointment. McLain recently underwent a Neuropsych evaluation through the Thompson Center in Columbia MO. Jayme picked up on McLain’s anxiety and realized it became something that was affecting his daily life. McLain also gave Jayme several indicators that he struggled inside the classroom keeping up with his peers. I am sure some of you are thinking that it is normal for a child on the Autism Spectrum to fall behind their peers. And while that may be somewhat true, it was more profound for McLain. He was literally crying out for relief and doing so in ways that most people would not understand. Along with Autism, McLain deals with speech and language disorder. He needs additional time to process what is going on and simplistic language to keep him in tune. And while a lot of these things were in place in McLain’s daily routine, his academics were something that was sending his anxiety into overdrive. Can you imagine sitting in a classroom with 18 students and all of them are keeping up but you just can’t? Think about going to a foreign county and not knowing any of the languages and trying to navigate around it by yourself. These are things he was dealing with daily and the way he was expressing himself was through his anxiety. The thing about moms is that we know when something is just not right. You feel it the first time you realize your child is developing at a rate that isn’t the norm. You feel it the first time you google “Autism” and realize that google just explained your kid. You. Just. Know.

Today, we listened to two amazing doctors go over McLain’s Neruopsych evaluation and tell us news that we were expecting but not in the fashion in which we heard it. We knew that McLain was struggling with academics but we didn’t know what the tests revealed and it was that McLain was struggling in a way that we would never understand. McLain was struggling on a level that absolutely broke our hearts and left us numb. As I sat there and listened to the doctor tell Jayme that McLain would be receiving a diagnosis of Mild Intellectual Disability literally felt like the biggest punch in the gut. The doctor was amazing and I personally can’t imagine handing that type of tough news over to a parent. I have been the parent who received multiple diagnoses for my kids and even though you speculate that something is going on with your child, you fill out the paperwork to proceed forward with the evaluation, go through the evaluation and wait anxiously for the results. I have said this before in another post when I was discussing this topic but the second that they say it out loud…about YOUR child, that is when it becomes real. No amount of mental preparation can prepare you for those moments. That is your new reality. That will become your new normal. And guys, it freaking sucks the life right out of you.

As we asked questions and had a beautiful conversation with the doctors, we then went through the same amount of feelings as they diagnosed McLain with Generalized Anxiety Disorder. But that wasn’t the part that was truly gut-wrenching, it was when the doctor told us this, “McLain’s anxiety is above and beyond.” That is the part that sucked. We knew that his anxiety was high but the crazy thing about anxiety is it can be presented in ways that you don’t recognize. We were able to learn and grow so much through this appointment. And I will say it again, beautiful discussions took place. Today was hard to sit and listen to all the things going on with McLain. And even though today felt like a loss, it wasn’t. It wasn’t because as always we are able to understand McLain more and help him get the services and supports that he needs to be happy, healthy, and thriving. McLain is not his diagnosis. That is not what makes him up. There is so much to this beautiful and amazing little boy and I guarantee you that he will be an intricate part of changing the world.

As we were driving today after the whirlwind appointment and heading to get our boys from ABA therapy, I went back through my old blog posts and read Jayme the blog that I wrote right after Chase and Peyton’s diagnosis of Autism. I read it to her because I hoped that it would help her feel some sort of comfort and to again let her know that she is not and will never be in this alone. I read that to her and she said, “will you write about McLain for your next blog post?” I swear that our brains are always aligned because it was the exact thing that was crossing my mind at that moment.

Today was a blur and it brought back all the sick feelings that I felt when my kids were getting a new diagnosis. I think it felt that way, actually, I know it felt that way because I love McLain to Jupiter and back (as Brody would say). It breaks my heart to the core that McLain was dealt with this set of cards. It breaks my heart that my kids were as well. It honestly sometimes just pisses me off that kids have to go through this. But I also have to stop and tell myself how beautifully chaotic our lives are. How much these four little boys have changed our lives for the better and gave us a purpose so fulfilling had the story not been written this way. But most importantly how God specifically put Jayme and me together on this rollercoaster to let us know that we will always have each other to lean on.

We are never alone and I do believe together we make a pretty kick-ass team.

Jayme,¬†we will keep grinding for our boys, having booze day Tuesday for our sanity, make your neighbors believe that I live with you, laugh until we cry, cry when times just simply suck, have those beautiful in-depth conversations that occur so naturally, FaceTime a million times a day and hold each other up when we can’t do it ourselves. We will keep at this…until all the pieces fit.

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