For Amanda, with Much Admiration...

I read a quote once saying that a mother is a person who does the work of twenty. For free. I find this statement to be insanely true. Somebody always has something for me to do, see, feel, etc., etc. I admit it! There are times when Noah just touches my arm and I full on break down. Thinking: if he brings me one more package of grits, I may lose my mind. So, I get up. I make the grits. He takes one look at them and runs away. Um, hello!? Seriously?

And if that wasn't the hundredth time he's done this I'd be fine with it.

As I sit here, Noah to my left playing games on his iPad, I can't help but laugh and forget about all that annoying stuff. I soak in this moment. His head on my knee occasionally looking up at me with these big blue sweet eyes and a big smile. That's it. That's why I'm here. This is my purpose. To raise this darling little boy. To guide his journey and teach him to function in society.

There is not a breakthrough everyday. But, somehow in the monotony the stars align and something happens. It's small enough that not a lot of people would notice or think much about but big enough to bring tears of joy to my eyes. A new sign. Out of the blue. "Eat." He smiles. We all clap hysterically. I run in the kitchen. "Noah! What would you like to eat?" He chooses a little container of microwaveable macaroni and cheese. I fix it and put it in the bowl that is specifically for microwaveable macaroni and cheese. And he eats it. Success!! That is a HUGE breakthrough. He communicated that he was hungry and he chose something to eat and ate it! That's what it's all about! In that tiny infinity I felt like a success. No one was crying. No one was beyond the point of frustration. All was right in our house that day!

As happy as Noah is and as big a success as that was, there will always be times when frustration will win and somebody's crying or locked behind a closed door trying to keep it together. Those days I admit are few and far between but absolutely happen. Crying and praying that God will tell me what my sweet little boy wants because I just can't figure it out. And then starts the chain...the chain of what-if. What-if I can't figure out what he wants and if I can't, who can? What-if he becomes angry? What-if anger turns into aggression? What-if aggression turns to violence? And so on and so forth. This is irrational, I know. But parenthood is irrational sometimes. These are fears I face often.

I read a post yesterday from a Facebook friend who is a sweet mama with two gorgeous girls, the oldest of which has a sensory processing disorder. "I spend a lot of time just crying on my bathroom floor and asking God "why" and not even really knowing what I'm asking God why about.." Exactly. It can never be explained why our children are the way they are other than a menagerie of cells smashed together and boom a person unique all in his/her own way.   "How come all these other moms could do it all and I couldn't? Then the thought occurred to me...here I was, in private, crying and feeling like I was failing my babies. Wondering why my mommy friends had found the secret to all of this and how to do it without ever falling apart while I was still floundering but I never posted about any of it. So this is me reaching out to you other mommies on the off chance you are like me. Posting all the good stuff and never the stressful moments for fear of being judged harshly on your capabilities as a mother." It's as if I had written it myself. These were the words from my own brain/heart. Lying awake at night wondering if "this" was all my fault. What could I have done differently. Was it something I did during pregnancy? But now I'm thinking clearly and I know this is not a punishment. It's definitely a sign from God that I'm strong enough and can handle raising a special needs child. I was chosen for this boy and he's saved me from the ordinary. We all have a destiny. And Noah was destined for greatness. I just know it!! 

To ALL the mamas reading this and daddies too. You are wonderful. We all sacrifice something for our children. Whether it's shoes, food, time alone with our spouses, or just being able to sit down and watch a television show. We need to give ourselves credit. It's okay to feel overwhelmed or less than perfect. No one is one hundred percent nailing this parent thing. Special needs child or neuro-typical, you owe it to yourself and your children to not be so hard on yourselves. You are not alone. And I hope you never feel that you are...

I Carry Your Heart with Me.

When Noah was diagnosed on August 5, 2013, we were told to only focus on the short term. Imagine someone in child development telling you that you cannot worry about your child graduating high school or getting married or moving out of your house and getting a job and starting his own family. What am I supposed to do with that? How am I supposed to take that? Who are you to tell me something like that? Then I think, hmm, maybe that's absolutely wonderful advice. She absolutely never said it wouldn't happen. She just said don't worry about it NOW. It's the same as 13, 14, and 15 year old kids worrying and wondering what kind of car they'll drive and freshman and sophomores worrying and wondering about what college they'll attend.

But in the same breath, how can anyone say, "don't worry" when it comes to your child. Special needs or not. It's in the blueprint of being a mom. It's embedded in our brains. Lord have mercy, I've gone insane. Just because this perfectly qualified, expert on the subject says don't worry means I shouldn't worry. Those are my worries.

Some days, things are okay. There are no meltdowns, no come aparts, and no panic. Eating is easy. Getting dressed is a breeze. Playing is fun. And good times are had! We watch country music videos and color and tickle and giggle. The stuff life's made of...the stuff that makes me thankful I had a child and became a mom.

Some days, I am frazzled. On the frazzled days, I worry all day long. And panic all day long. And I cry alone in the bathroom on my breaks. Or if I'm off, I lay in bed watching mindless TV wondering if I can do "this". Am I the right person to raise this child? "This." I just put quotation marks around something I can't quite explain. On something I don't want to put in harsh terms. Autism. There it is. That word. The dreaded, painful word. Noah is learning to deal and live with Autism. I am learning to parent Autism. Luckily, for now, Noah has no idea he is "different" or "developing slower than other "normal children."" Sorry for all the quotations. Please know that I know no other way to say it. Normal is the only word I know for regularly developing children. Autism Spectrum Disorder (ASD). They say if you've seen one child with autism, you've seen one child with autism. There are no two autistic children the same. And I completely agree. It's a spectrum of complex developmental impairments. I.E.: social impairments, communication difficulties, and restricted, repetitive, and/or stereotyped patterns of behavior.

I would describe Autism as having a different processor. Like Windows XP and Windows 8. Completely different. Neither are wrong. Just different. Or like Mac and PC. Totally different. But there is really no picture that I can paint to explain. I can barely explain it to myself. But, if I've learned one thing it's that you have to look at Autism with your heart and not your eyes. And yes raising a child with Autism is hard. But it's the best kind of hard there is. Love is hard. Doing the right thing is hard. But it's easy to love Noah and do the right thing for Noah. That's all I know.

I posed a question earlier. "Am I the right person to raise this child?" I believe I am. I believe kids pick their parents. And this special soul chose me. He chose me. What a great way to look at this. He knew I was equipped to handle it. I work early, early, early hours to who knows what time. Dialysis is questionable. I never know when I'll be home. But I guarantee that when I walk in the door, I'll be greeted with a toothy smile by a little boy with some kind of cookie residue all over his face and hands. Toys everywhere. That's evidence of joy. No matter what kind of day I've had. And with dialysis, you never know. He's always happy to see me. Always. No question. It's concrete. And we all need a little concrete in our lives. He teaches me something everyday. He's most recently taught me to look at things with my heart and not my eyes. Your heart knows the reasons and it may not tell you as quickly as you'd like but eventually you'll see. And right now I see a sweet little boy with a tattered Winnie the Pooh and his Nanny's iPad playing games. My heart. My whole word.

"i carry your heart with me (i carry it in
my heart) i am never without it (anywhere
i go you go, my dear; and whatever is done
by only me is your doing, my darling)
i fear
no fate (for you are my fate, my sweet) i want
no world (for beautiful you are my world, my true)
and it’s you are whatever a moon has always meant
and whatever a sun will always sing is you

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life; which grows
higher than soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

i carry your heart (i carry it in my heart)"

-E.E. Cummings