This is My Life

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.  That is our family.  I still honestly believe he will surprise us all.  He’ll be the one you hear about. The one where when they’re older you’d never know.  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 the things we do have, and the goals we have reached with Noah.  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 issues that almost keeps Noah hostage within his world.  I’m handling the not talking. 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 mans voice.

What is so hard, is seeing how Noah handles situations so differently than his typical peers. Kids playing with each other, with 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’ll admit it.  Noah’s fine.  He doesn’t know that he’s missing out on playing.  He doesn’t want to do any of those things anyways.

So, Noah is not hurting.  Mom is.

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.  Typical toddler stuff.

Lies.  I lie to myself when I say I’m lucky to have an “easy” child.

The kiddos around us continue to grow and thrive and it makes me so happy to see. While at the same time my heart breaks for Noah.  It’s not so much all the odd behaviors or the delays.  It’s the fact that your child has no desire to be a kid.  This is the hardest part of our journey so far..  and it’s the part that I don’t know if 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 { I couldn’t be more thankful for that } a very high percentage of marriages with disabled children end in divorce.  Worrying about all the costs that go into raising a special needs kiddo.  We have insurance, but yet the therapies he needs are still very costly.

And the worries about Noah. Will he go into mainstream classrooms? Will he have a genuine friend?  Will he go to college and have a career and a family?  These aren’t things typical kiddos parents worry about…they’re just not. These are the monumental worries that special needs parents have.  While Noah is not severe on the spectrum, our struggles are very real.

Now, I normally don’t rapid think these things through out 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 moments when you let your mind drift to the what ifs…and then it’s all down hill from there.  I have to stop myself, which luckily I am able to do.

Noah is one of the funniest kids I know.  He makes me laugh every single day without saying a word.  How amazing is that?  Noah can make a room light up with just his smile.  He has given me a strength I didn’t even know I had within me.  He is nonverbal, he spins, he screams, he fights me with almost everything…and ye,t he is an amazing kid.

All I can hope is everyone he meets in his life will see that.  I sometimes wish he could be just a kid and I could be just a mom.  Even though things are tough, I wouldn’t trade it nor my boy for the world.

By Danielle Mager

Danielle is the proud mama to Noah, a handsome, silly, strong willed, almost three year old who also happens to be on the spectrum. Danielle blogs at story of noahism and shares their journey on Facebook at https://www.facebook.com/storyofnoahism/.


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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.

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Finding Cooper's Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you're never alone in the struggles you face. And once you find your people, your allies, your village....all the challenges and struggles will seem just a little bit easier. Welcome to my page!

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