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When I started blogging nine years ago, most of my posts revolved around Big Man’s journey with prematurity – my fears, my memories, my concerns, his issues. The thought never crossed my mind to sugar-coat anything we’d been through. If I did, that would somehow take away from every milestone he achieved, every bit of normal he earned. There was no need to not be fully honest. The community I blogged on would have called my bluff in a heartbeat, because they had all walked the same path. I needed to be truthful particularly for those parents at the beginning of that journey. It would have been disrespectful to them to be otherwise.

I don’t sugar-coat in my writing now. We have three children – a preemie who is in the early teenage years, a princess who will soon be a teenager herself, and my work-in-progress who is autistic. Our life is often messy, full of chaos and drama. We have so-so days, we have amazing days, we have downright horrid days, and everywhere in between. I have parenting fails more often than not, but I also have some wins in there too. What you read here – well, the words are honest and truthful. To write anything else, to sensationalize or downplay at all would be disrespectful to my children, to our family.

You won’t hear me say I think autism is the best thing that’s ever happened since sliced bread. It’s not. It sucks. It’s brutal and heartbreaking to watch my son try to navigate a world so not suited to the way he thinks, processes, feels. I have learned and grown as a person simply through parenting him, but that’s me finding whatever silver lining I can given the hand we’ve been dealt. Do I appreciate the parts of him that are pretty freaking amazing, which he would not have were he not autistic? Definitely. But as I’ve written before, I would give those up to not have to see him fight daily through his life. Again, me having to see some kind of silver lining.

I have some amazing people in my life I would not know were it not for Big Man’s premature birth. I have been given some amazing opportunities as a result of our volunteer efforts with the March of Dimes. Even so, if I could take it all away, make it not so, I probably would. Those scars are deep. The memories tortuous. Even now, almost fourteen years later, I will wake in a fright in the middle of the night, having dreamt of those NICU days, hearing alarms going off in my head.

I guess what it comes down to is feeling a responsibility to be quite plain and honest in my writing. It has enabled me to connect with other ASD parents. It’s brought understanding to people who don’t know what it means to have an autistic child. I hope in some ways it’s helped other moms out there. To tell our story as less or more than it is just isn’t my style. What you see is what you get….ugly, beautiful, heartbreaking, joyful, messy, or otherwise.

3 thoughts on “Why

  1. Yes, yes, yes, a thousand times yes. Like you, I would fix Olivia’s 5p- syndrome in a heartbeat. Life is challenging enough without adding autism or a chromosomal disorder to the mix. I’d fix her fifth chromosome and she’d still be sweet, funny, silly, etc.

    I appreciate all your honesty, your faithfulness to the truth.

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