this is my life

November 7, 2017

Sometimes, I still can't believe that this is my life. My son is the one in whatever the number is now. I am that mom. We are that family. I still honestly believe Noah will surprise us all. He'll be the one you hear about. The one when they're older you'd never know.  And I am not ashamed of my son, nor his disability. It is a part of him and makes him who he is. But what I wouldn't give to just make things a little easier for him. To make everything seem less scary and overwhelming to him. And if I could make that happen with a blink of an eye, I would.

 

I am grateful for what we do have with Noah, and the goals we have reached. But it's still hard. It's still knowing your kid is the different one. And we've only just begun this journey. 

 

 

I can handle the spins. The screaming. The constant need to be moving and seeking input. I can handle all the sensory needs that almost keep Noah hostage within his world. I am handling the nonverbal. It's not easy by any means. But I'm learning to embrace other forms of communication, and be patient in hopes that the day will come when I get to hear my little man's voice. 

 

What is hard for me, is seeing how Noah handles situations so differently than his typical peers. Kids playing with each other and toys, and mine has no idea what to do. Something that should come so naturally, is so confusing to him. And that crushes me. This is about me. I know that. Noah's fine, he doesn't know he's missing out, nor does he even want to do any of those things anyways. So Noah isn't hurting, mom is. 

 

And I try to convince myself that at least I have an easy toddler, in a toddler sense. Noah doesn't demand things from me. Except for his basic needs and to turn the television on.  That's all he really asks of me. So no asking to play games over and over and being told no over and over--you know, typical toddler stuff. Lies. I lie to myself when I say I'm lucky to have an "easy" child. 

 

 

The kids around me continue to grow and thrive, and it makes me so happy to see. It does. But at the same time my heart breaks for Noah, and all that he is missing out on. It's not so much the odd behaviors or the challenges that I struggle with, it's the fact that your child has no desire to be a kid. This is one of the hardest parts of our journey so far, and it's the part that I don't know if or when it gets any better. 

 

It's also the worries. Worrying because your child's future is so unknown. Worrying about if you have another child, will they be on the spectrum? Because if you have one, you are about twenty percent more likely your second will. It's worrying about your marriage. Although Adam and I are perfectly fine, about eighty percent of marriages with special needs children end in divorce.

 

It's worrying about all the extra costs that go into raising a special needs kiddo. And the worries for Noah; will he go into mainstream classrooms? Will he have a friend?  Will he go to college, have a career and a family? These aren't things typical parents worry about, they're just not. These are the monumental worries that us special needs parents have that keep us up at night.

 

 

While Noah is not severe on the spectrum, our struggles are very real. Now I normally don't rapid think these things throughout my day, I would go nuts. I usually am a super optimistic person. I think anyone who knows me could agree to that. But there are times when you let your mind drift to the what ifs.. but we can't go there, not yet at least. 

 

Noah is the funniest kid I know. He makes me laugh every single day without saying a word. How amazing is that?  He can make a room light up with just his smile. And he has given me a strength I didn't even know I had within me. He's a pretty amazing kid. All I can hope is everyone he meets in his life will see exactly that. 

 

 

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