I can’t say it but I have to.

I have a couple of different drafts in this blog of posts that I’ve started and never finished.  I’ve been trying to keep up with things and post them chronologically but …tonight I’m just going to write from my heart.  There is something that I can’t say and something that I can’t see and something that hurts so badly to think about …so maybe if I write the words I’ll get used to them.

My son (likely) has autism.  I know I’ve referenced it here several times… but I never really believe it.  I don’t want it to be real.  Is that awful?  I love my son so much and I love his quirks and his brains and his humor and his smile and everything about him but I don’t ever want anything to be hard for him.  I don’t want to think about the possibility of special classrooms, accommodations, a lifetime of IEP meetings, regression, diet, therapy, etc.  I don’t want it to be real.

And also…did I do this?  I cannot accept that my son may have this disorder that they don’t even know what it is or how you get it or anything about it.  Did I cause this?  Is it because I hovered too much when he was little …is it because I have OCD and made him this way?  Is it the food I ate?  Was it the vaccinations or is it his diet?  WHAT IS IT?

My sweet boy finds one thing and he obsesses.  The routine changes and he can’t handle the deviation from the norm.  He cries.  He panics.  He’s lost in there and he can’t really get out.  He is trapped inside of a chaotic brain and sometimes I can’t get to him.  There are no mommy kisses that make this better.  There are no comforting words.  There is NOTHING I can do to fix this and it kills me.  I am his mother.   I made him… I grew him…I delivered him and I nursed him.  He is my perfect little boy and he is struggling.  Why can’t I help him?

I’ve never been one to censor myself and I don’t plan to start now.  I am sad.  I’m scared.  Autism is terrifying to me.  It is a whole world of unknowns and I am paralyzed with fear.  I feel sad often that he may never be the carefree person I’d prayed he would be.  I feel completely depressed often because I fear he will struggle like I struggled.  Adolescence will be hard and things will be that much more challenging.  I also fear that he will be made fun of.  The thought is almost too much to handle.  My middle school years were awful.  I was teased for my clothes and for my skin color.  I’m terrified someone will call him the R word.  The thought actually makes me physically sick.

In the first few years of his life I felt SO much pride in the fact that he was such a happy kid.  Everyone commented on how happy of a baby he was.  I reassured myself that a child this happy could only continue to be that way.  I made myself feel better by thinking he likely got his father’s genes and he wouldn’t struggle with mental health issues like I have and do.  Lately, he hasn’t seemed as happy as often.  His fears are real, his emotions fluctuate often and intensely.  He gets stuck in his head and he obsesses… a lot.  All I can tell myself is that this may be forever.

If you want to know what autism (or having a child with mental health issues) is like look at pictures of my husband and I before Jack’s developmental delay diagnosis vs. now.  Together we’ve lost 45-50 lb between the both of us.  The books on our shelves that once had anything from the Beatles biography to Shakespeare’s sonnets have been replaced with whole 30 cookbooks (because we’re trying to go gluten and casein free) and healing autism/recovering children books.  Our browser histories are full of ASD screening quizzes and ASD/OCD blogs.  Our Amazon cart is full of inulin/fiber supplements, fish oil and probiotics.   Our thoughts are consumed with this potential diagnosis and we spend every waking minute making sure he is okay or will be okay.  We cry … a lot.  We argue… a lot.  We sleep… too little.

If you want me to paint a more intimate picture– Facebook showed me my memories today and I got to see one from 3 years ago.  My husband snapped a photo of me and my son at the playground on a slide.  His hands are in the air and he is SO happy.  He doesn’t have a care in the world.  He is with his parents and he is safe and happy and healthy.  As for me,  I have the biggest smile on my face.  A genuine, appreciative, grateful smile that stretches from ear to ear.  You can see how full my heart is in it.  It was a moment of pure joy.  I saw the photo and I ran to the bathroom at work and I cried in the stall.  The photo reminded me that there was once a time before all of this.  A time when this little boy didn’t suffer at all.  A time when we didn’t have any reason to worry about anything (though I did, often, and for no reason.)  A time that seemed hard then but was a breeze compared to now.  The photo was bittersweet and my reaction was strong.

I am writing all of this for everyone to read because the fact is, this sucks.  I’m sad.  I’m hurt. I’m sick.  I’m scared. I’m angry.  I’m jealous.  I’m struggling.  My son is suffering and I’m living each day disappointed in myself for not being able to make it better.

I feel guilty because it could be worse. I know it could be much worse.  I hate that I Feel so many things. I hate that I am consumed by this …word.   However, even having said all of this and feeling so many different emotions every single minute… one thing stays the same.  I love Jack with every single bit of me.  He is my heart and he is my love.  I will never stop fighting for him and trying to make everything easier for him.  I am so grateful to God for giving me this precious, amazing, beautiful, perfect little boy.  He has some issues, but we all do.  Every negative thing I feel about autism is out of fear for him.  I hurt when he hurts.  I cry when he cries.  I want him to be happy. I want life to be easy.  I want him to throw his hands in the air again because he’s happy and carefree.  And I want to be right there with him doing the same.

 

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