The Truth

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.

10 thoughts on “The Truth

  1. Shannon and the family C,
    Of course people will follow your posts. You are real and you are spectacular. The amount of love you have for your family is amazing. Every family has “bad” days, but they help to make the good days better. You guys do an amazing job with those four kids, they appreciate it now and they will appreciate it later when they get older and can read what you wrote. Keep writing and keep being real. YOU are a total rock star! Keep it real.
    Dennis- neighbor by proximity, friend & fan by choice.

    • Thanks, Dennis. I can’t tell you how much our family appreciates your family’s support, understanding and friendship! More than you will ever know. Thanks for your kind words. The truth is hard to tell. 🙂

  2. I. LOVE. this. post. Truly. I admire you, I respect you and I am proud to call you my friend. Every parent has struggles. Every one of us. I love reading about your struggles because it teaches me something I may not learn on my own as a parent. AND you help me in my career. Just seeing how you deal with issues that come up, whether I’m hearing the entire story or not, teaches me & portrays more than you could understand. You may be holding back, but you are not doing an injustice to Finn or your family with this blog. And for me, you’re doing exactly what you had hoped you’d be doing for at least one audience member. ❤

  3. I just discovered your blog and look forward to reading more. What your feeling sounds like how moms feel and especially moms with little ones on the spectrum. I have a son with pdd-nos and can definitely relate.

  4. Thank you for having the courage to let go and tell it like it is. The truth is just as helpful to families like us as are the stories of triumph (sometimes, more so, because as we know how a bad day can stick in your mind and make you wonder why you put so much into trying.) Thank you for acknowledging that we are not alone. I will continue to enjoy your posts.

  5. Its easier to be excited and want to share the good successful days! I only have the crazy toddler twins out of your crew and I go crazy most days! I only share those moments with my mommy friends who I know will understand and give me the approval I’m looking for when tjings go wrong! You sre amazing! 🙂

  6. Shann…you make EVERYONE feel sane! No, really, I could regale you with my own tales of entire days spent in pajamas because my dystrophy was “acting up”. Or how losing my bladder function in the middle of the Victoria’s Secret Semi-Annual Sale was one of my many, seamlessly unrelenting, kurfluffles associated with a dystrophy that doesn’t care about the fast degeneration of the nerve that works with (or against) all bladder control (don’t fret it has been controlled for quite some time now, so please, don’t feel like you need to roll out the plastic sheets when you invite me over…I’m officially housebroken)! A dystrophy where my prognosis is “we will do our best to keep you comfortable and out of a wheelchair for as long as possible”. You know there has never been ANYTHING shy about me or you for that matter! Truth be told, you don’t have to be an amazing momma bear to not literally hole yourself up in your closet and cry your eyes out because life handed you a double serving of a fresh steamy pile. If life is perfect you are either A. delusional; B. drunk or heavily medicated; or C. both A and B. But, like the way an Irishman (ahem or woman), could spin a fine tale, good or bad, true or rather embellished, so can you too…only you put the “shannon spin” on it. That’s why we ALL love and adore and admire you. Not just for your “sunny spin” on stories, not for the “happy times”, but simply for the fact that you have remained true to who you are. You put yourself and your children’s lives out there for people to read and absorb. You are an activist. A voice. A mentor. And so much more all rolled into one. Who knows? There could be a parent of a amazingly abled child, who is reduced to a sobbing mess, and your words refocus her or him, making them laugh through tears (my favorite emotion ala Steel Magnolias). I can safely say this about life, as I feel like your older (not by much), crazy sister who will always be your Floridian rock. Know this: Life is like my dystrophy…it can be complicated and messy and even embarrassing at times, but it causes you to realize what is most important in life – when I have a “good day” – I make it the best day ever because who knows when the next one will come along – so, whether your child is “normal”‘or “amazingly abled”, isn’t the BEST part about ALL children their innate uniqueness? Who wants Stepford kids anyway?…Boring! Jeez, I consistency have meltdowns too, and, quite frankly, life would be one big yawn fest without them. I can sympathesize with your daily challenges, but I feel God chose you and Joe because he saw an inner strength in both of you that maybe other parents couldn’t or wouldn’t be able to handle. He knew you were the type of parents who could handle anything – even lemons….and oh what delicious lemonade you have made! Life is a very bipolar roller coaster, or as I lovingly refer to it as the Bipolarcoaster. It’s tousled. It’s complex, but, most importantly, it’s fun – much like your hair freshman year. I find writing to be as therapeutic as I imagine a $1,000 a day shopping addiction, that I wish I could afford, would be. So I opt for the least expensive way to cope. So, however gritty, raw or pretty and honkey-dory, funny or full of sarcastic tales – life is what it is. I, too, drove past that same place, but although my wishes have remained unanswered, to say my life is not full, well, that would be a gross understatement. Thank you for your cynicism, candor, brutal honesty, and belly laughs and know that I am rooting from the sidelines – with my mega-phone voice (BEEEERRRRRNNN-AAAHHHH-DETTTTT!). Know that my doors are ALWAYS open down here, for you and your beautiful – the original family of funk and ALL OF YOUR PRECIOUSNESS!!!! Love ya always sista and former, but forever, townie. xoxxx

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