Heavy Heart

Today was a heavy day. I was reminded that your life can change in a moment, and when you least expect it. There is a huge part of me that just wants to keep all of this a secret. I don't know how this will change relationships, but I know it will change things. And I don't handle change very well! Well, maybe I do, but I don't enjoy change. And part of me doesn't want to make this public because I fear judgement. And reactions that will be hurtful.

But I had a few friends remind me that it's important to be transparent so that God can use our trials as tools for others to see Him at work. So I share this as a very vulnerable mom. I'm not in a very good place with this circumstance, but perhaps through sharing it, I can find some refuge.

This journey started 18 months ago when we started noticing that Tori was different. At first, we found it entertaining. She would do odd things and we would laugh it off as "another Nash moment." We were constantly telling friends and family when her behavior was unusual that she was "just being Tori." It wasn't until her 2year check-up that we were told we needed to take these red flags more seriously.

We had Tori evaluated through the school district we lived in and it was quite the eye opening experience. All of a sudden, our baby girl went from being odd, to having a medical diagnosis. Because she was under the age of 3, they were very reluctant to label her with a specific diagnosis. After months of filling out tests and home evaluations, she was given the general diagnosis of DD- Developmental Delay. They said they would continue to watch for a more specific diagnosis under the umbrella of the Autism Spectrum Disorder or Emotional Behavior Disorder as she got older. At the time, the term EBD was a better fit for what they were seeing, so we talked about getting services towork on those symptoms.

Unfortunately, by the time we had finished the eval process, it was time to move.  We all decided that it made more sense to start her therapies once we had moved into our new home in a different district. If I had only known at the time that our move would be delayed by many months...

So here we are now, almost one year later. Some of Tori's behaviors had gotten better since the move, while others had gotten much worse. We called the new district and asked for their opinion and they suggested that we have her evaluated again. So we went through the rigurous and time consuming process of evaluations again. This time, Kenny and I were confident that they would not find anything. We had convinced ourselves that we had things under control and that they would most likely say to us that she was a perfectly normal 3 year old just pushing out buttons. My heart just hurts as I write this. I was so naive.

Three people came from the district today to meet with us and discuss the results of all the testing. They sat across our kitchen table from us with stacks of paperwork. And then they told us news that will change our lives forever.

Our sweet Tori scored in the 99th percentile for EBD. She was now officially being labeled. I had to blink a few times and look around the room to make sure I was really there. I was sure this had to be a dream. The child psychologist went on to say that Tori was testing at the "clinically significant" level and would need intense therapies. They explained that they rarely make this diagnosis at such a young age because it is such a heavy label, but they were certain that this was the right choice for her. It was so hard to take in those words. I felt blindsided. Which probably sounds dumb since this was an option from the begining. But I had myself in this nice place of denial for so long.

After a few moments, I asked them what the next step should be. This is where the next part of my struggle comes in. They said Tori would qualify for 6 hours of therapy a week through the district, but it needed to be in a public preschool setting. I don't do public school! I am so passionate about homeschooling and the benefits of home education. I wanted to laugh and tell them the meeting was over, we were not interested. But something inside me said to "Wait...and listen." (The meaning of Selah, and a constant prompting from God lately!)

As I sat there trying to come up with all the reasons I was against this label and their idea for therapy, they were discussing the best placement for Tori. When they finally decided on the perfect fit for her, they shared it with us. I almost fell off my chair. My stomach flipped. And the dots connected. You see, the preschool they had chosen for her is in a private home. A few years ago, when I was pregnant with Tori, I was asked by a good friend that worked there to bring Kenzi and the dog for a few Show-N-Tells. I fell in love with this unique preschool that was run out of this cute home. I remember touring it and thinking that I would totally send my child there.

So here I am, 3 years later. And God is showing me the plan he had all along. And on Monday, our sweet girl will ride the "short bus"(It made us laugh when they tried to explain the bus without using this term!) to preschool where she will learn coping skills and social skills with her new Para and a Special Ed teacher.

And that's how our life changed today. The little girl that I thought was quirky was actually struggling with a very scary mental illness. I have to send her away to a place where she will most likely feel fear. And I have to know that she is in God's hands. Our children are not our own, but His. And His plan for her is much better than mine.

Lots of silent tears today, and a huge need to spend time with my husband to process this life change. In some way, I am mourning the loss of the child I had dreamed she would be. I know her life is still valuable and will be very fulfilling, but it will be in a very different way. They suggested we contact Children's Hospital right away and meet with a mental health specialist to determine the specifics of this illness. Most likely counseling and medication will play a big part of her life.

I struggle with how to share this with the people in our life. EBD is often an invisible disability because most of it's symptoms are internal. I have had friends tell me that they didn't think anything was wrong with Tori, which of course made me feel like they thought I was making it up. And I had a very honest friend share with me that they thought Tori was different because I didn't love her as much as our firstborn. The guilt overwhelmed me for days. So on one hand, it's nice to have a medical diagnosis. I'm not crazy. But on the other hand, well, I don't even know how to explain the pain I feel for my daughter today.

Heavy heart today. Preparing for more major changes in our life. And praying God will equip me to handle all of it.