I haven’t been writing much lately. One part has to do with the four crazy kids running around my house coloring on the walls and the other part has to do with me.
I’ve been struggling with my “voice” on this blog.
When I first started blogging, I said I wasn’t going to “sugar coat” things. I started blogging because I wanted to express myself about raising a family amidst autism– the good, the bad, and the ugly. Only, I got scared. I didn’t want to tell you about the bad and the ugly. I wanted you to like me. I wanted you to like my family and most of all I wanted you to like Finn.
Because when I tell you that Finn is a sweet, caring, funny, energetic, thoughtful, and smart boy, I’m not saying that in spite of his autism. He really is all of those things. I felt like if I told you all of the struggles and the truths about autism, you would judge that part of Finn before you ever even knew him. And I could never forgive myself for that.
I wanted you to see the beauty, the joy, the quirkiness, the genius, and the wonder of Finn. I chose not to tell you about the fear, the anxiety (his and mine), the meltdowns, the impulsivity, the night terrors and the aggression. I didn’t expect you to walk away wishing you HAD a kid with autism, but I also didn’t want you to fear it. There are so many blogs out there spreading fear. I didn’t want to be one of them. (And I still don’t.)
There are some amazing autism blogs out there who inspire, and teach, and give hope. I wanted to be one of them. I wanted to be a part of the conversation and the movement that is changing the autism world.
But in doing that, I’ve stripped my blog of the truth. Like my post “The one about elevator anxiety.” I’d love to tell you that when I see Finn’s anxiety starting to flare, I always opt for the steps. But the truth is that sometimes we have to physically pick him up and put him on the elevator because we have twins in the stroller and an 8 year old who is getting nervous that his little brother is going to melt down in the middle of New York City. And the room is on the 9th floor.
I left that part out.
I’ve felt compelled to wrap everything up with a neat, little bow. To always find the silver lining. To give others hope. To give me hope, too.
I thought that’s what you wanted to hear.
But life isn’t always that way. Not every story has a happy ending. Some endings aren’t written yet. And some endings are just messy and raw.
I thought that if I told you the truth about our struggles that you would pity me or I would look ungrateful for this life. And, believe me, I want neither. Three of my four kids (and one horrific miscarriage) were conceived out of fertility treatments. Nothing about my “full hands” is by accident. Every time I take Finn to Speech and Physical Therapy, we pass by the fertility doctor’s office and I am so palpably reminded of how much I feared living a life longing for these four souls. Each of them were prayed for and wished upon and dreamt about. I would have given anything in the world to be sitting right where I am right now. No struggle or challenge will EVER change that. But I would be a liar if I wrote those challenges out of our story altogether.
I hope that someday my kids read my blog and feel my love, but also see my humanity. Someday, when they have kids of their own, they will realize that sometimes, more often than I am willing to admit, I was making it up as I went along. I hope they realize that I was doing the best I could and somehow that will still be enough.
People comment on my blog and Facebook posts about what a good mom they think I am and I feel like a charlatan. Because on most days I am barely holding it together. I have yelled things through gritted teeth more times this summer than I care to admit (although I just did). I’ve been so frustrated that I have literally seen stars. The truth is that just because I am an autism mom it doesn’t give me any extra patience or virtue. I wish it did. I go to bed regretting things I’ve said and rehashing impatient moments from my day just like everybody else. (I think.) And there are some days when I just resent how much easier it seems to come to everybody else.
Even though I know that’s not true.
I am not perfect. I don’t have this whole thing together. I wish this blog could be more like Mary Poppins and less like Nanny McPhee, but that’s just not my life.
And I have to live in the truth if I’m ever going to survive. Writing this blog is part of that catharsis for me. And I have to feel safe to be me.
So, from now on, I’m going to try and be more truthful on my blog. That’s not to say I’m not going to still try and find the good in things, but if some days things are bad, then things are just bad. It doesn’t mean I won’t pick myself back up again tomorrow, but I may need a word or two of hope from you. I will always be an advocate for Finn, but I’m going to stop worrying about being a VOICE for autism in the way that might get me into the Huffington Post. There are plenty of other bloggers out there for that. I will always try to do Finn and everyone else in my family justice. I would never want to write anything that would shame or hurt them. But this life and this blog are my story, too, and I have to tell it my way.
I hope you’ll still follow along.