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When My Life Was Flipped Upside Down by a Dual Diagnosis

The other day my life was flipped upside down. We were on our way home from the video EEG and the impact of a dual diagnosis struck me to my core.

It was a Friday afternoon. Derek was driving. I was watching all the cars out the window. My mind was reviewing the information we had learned and coming up with a new list of to-do’s. When, suddenly, it dawned on me. This is our life. Appointments, tests, seizures, medical fears, disruptive behaviors, therapies, financial burdens, hospital stays, unrelenting exhaustion and prescriptions. These things aren’t coming to an end. This is our normal. In that moment, I let it all flood in. I looked down at my lap and thought of all the ways I wish I could change this. Then, I started to really cry. For the first time, I grieved the childhood I dreamt for Myron. And the family life I hoped for us- the one that was replaced by so many stresses and appointments- the one that most families don’t  ever experience.

Maybe I should have realized this way sooner, but I didn’t. It took awhile for everything to sink in. I’ve been distracted for two years. Our lives have been jam packed with doctor appointments, therapies and tests. I assumed this was a fleeting season. We just needed to persevere through it. And it would go away. But in that car, after living in survival mode for so long, I realized what had been happening the whole time.  Myron has epilepsy and autism. They aren't going anywhere.

As each diagnosis came, I never felt like our family was changed by that knowledge. It was just another appointment, a box to be checked; another conversation, one of so many, with his doctor.

With Myron’s epilepsy, the diagnosis came drawn out and hectic. The doctors thought it was just febrile seizures, then complex febrile seizures, then, he might need to be screened for epilepsy. Then, yes, he will most likely start having seizures without a fever. And then, we were sent to do a lot of tests for other neurological issues. And, then, he had a seizure without a fever. Then, he had a different kind of a seizure and, then, we had more tests, and more seizures, and more tests and still more tests, tests, tests ...It always felt like a whirlwind- as if it was happening around us but we weren’t actually participating.

With Myron’s autism diagnosis, I was unconvinced of its validity for some time. I, honestly, thought he was misdiagnosed. Yes, autism had been thrown around since he was one, but I was sure my little Myron didn’t fit into that mold. I was ignorant. The thing is, I didn’t really know what a three year old with autism looked like. And, what I made up in my head, didn’t look like Myron. Time and research has changed this in me. Fast forward six months, and I have no doubt that his diagnosis is accurate. It was a slow process for me, but it has, eventually, sunk in.

After that car ride, when I accepted our reality, I felt a shift. My once hopeful eagerness had given way to weariness.

The dual diagnosis feels crippling. One second my mind is on autism, the next it's on epilepsy. Each of these, on their own, has endless to-dos and perpetual fears. Smash them together and it feels like absolute chaos. Our life and my mind bounce between the two constantly, and the result can be unbearable.

The best way I can describe it is being in a ring, head on with your adversaries. I get punched to the ground by the one diagnosis. I regain some strength and am about to stand when the next diagnosis appears from my blindside and kicks me again. I try to fight back, and the other diagnosis comes up behind me and deals me a blow. Back and forth, back and forth, this goes on. Right now, they are winning.

When you start a blog, they tell you to make a bunch of posts beforehand so you can have them ready to go. I did this, but I can’t post these right now. They suddenly feel irrelevant.  I don’t feel the way I felt two months ago, and I don’t want to lie and say I do. Back then, one of my main desires was to look at special needs light heartedly. I wanted to be funny. I wanted to giggle off my worries and let people know that even special needs moms can have a good sense of humor about their kids.

It turns out, I am in a season where it isn’t funny to me at all. It is just hard.

And, I think that is okay. I know myself and I know this won’t last. I am sure God will pick me up and wipe me off. He will take my hand and He will walk me through the rest of this journey. I will laugh and joke about all the weird and hard things that happen daily. I will look back at this time and be so happy that I am not in this weak and raw place anymore. But, I know I have to go through this part. So, you can find me here, sitting in the messy emotions, waiting to learn from them all and stand up again.

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Jun 28, 2018

I remember the day my son was diagnosed with epilepsy and its like you are living in a surreal moment until it hits you. When it hit me all I could think of how not “normal” his life would be, but now I realize that “normal” is different for everyone as we know it. You are a strong mommy. Keep up the wonderful job you are doing.

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