An Unfamiliar, Familiar Place

Today I took a walk. I bundled up on this cold 20-degree Midwestern December day. I pulled out the biggest sunglasses I own. I picked up my headphones. I laced my tennis shoes. And I walked. I walked and I cried. And all of me transported back to a different time. A time that seems so long ago now. A time when my escapes to walk and cry were frequent. Constant.

And, then in that moment I felt something inside of me split in two. Simultaneously thankful and furious.

Thankful. Thankful for so many things. For all of the wins and the gains over the past few years. Thankful for the strength that continues to come from a place inside of me that I only know exists because I am still here today. I am still walking this journey. Still striving to live a life battling against something I do not understand. Something I will never understand. Thankful for all of the tear-free days lately. Thankful for my son. The greatest gift I have ever been given. And the most incredible person I know.

And furious. Furious to be back in this unfamiliar, familiar place. Walking and crying. Confused and angry and lost and heartbroken and outraged.

I walked and I cried and I listened to all of the saddest songs on my playlist. Because, apparently these are my adult coping skills. My mind raced back to the beginning. To all of the times I looked at my son and worried about the journey in front of him. In front of all of us. Lost sleep thinking about how his autism diagnosis would intersect with every single facet of his life. Of our lives.  To all of the moments I was told what he would not do. Could not do. To all of the people who underestimated him. Underestimated me.

Today someone took something away from him. And they took it away from me too.

The thing they took cannot be held in your hands. It cannot be seen, at least not unless you are looking in the right places. It is something more valuable and important than any possession. Today someone took away my son’s chance to demonstrate just how capable he is of moving mountains. Of making enormous gains. Of learning and growing in ways that seem impossible. But they are not impossible. They are very possible, but only if he is given the chance.

And today someone took away an important chance. And there is nothing I can do about it. There is no war to wage. No hell to raise. There is no board to appeal. No second opinion. No redo. Today I was told my son can no longer be a part of something that was important to him. To his journey. To the skills he is building; for today and for the rest of his life.

And the worst part? I blame myself. I hide behind my big sunglasses and my heart-splitting music and I walk faster and faster. And I think about all of the things I should have done differently.

I should have been more prepared. I should have done more to help him find success. I should have found more time. More energy. I should have done more. So much more.

I am back once again at a crossroads on this journey. Uncertain of which way to go. But this time, there is a road that is closed. Not under construction. Not down to one lane. Not flashing lights. Closed. Done.

And now it is the only road I want to be on. For a million reasons. Because he wants to. Because I know he can. Because I know how important it is for his growth. Because I want to prove everyone who doubts him wrong. But more than any other reason, because I am his mom, and it is unbearable for me to think that there are places or things or people that are just closed for him.

We have been navigating our autism journey since my son was 18 months old. Today he is seven and a half. He is unrecognizable from the three-year-old barely-verbal child who started ABA therapy. He has risen time and time again. To beat the odds. To show us his potential. To prove that with love and time and programming he is limitless.

And today, I have to enforce someone else’s limits on him. And I am mad. Mad and sad and confused.

This story is not over. The page is turning. Today the fire inside of me that has been idly burning over the past few months is now erupted into immense flames. Fueled by passion and love and an unwavering commitment to advocate for my son. Today it burns bright for my son. For everything I know he can do. Will do.

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