Social Media Is Scary (and a surgery update)

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Facebook’s reminder of your memories can be wonderful, and yet in the past few months, I have dreaded clicking on the notification each morning as I check my overnight messages on my phone.  Most of the time, it’s some innocuous photo I posted about my cats, or complaining about yet another Denver Broncos playoff disappointment, or wondering why the potholes in the city are so bad.

Once in a while, it will be a photo I posted of Quinn over the last four years, and sometimes, it brings me to tears.  Part of it is that I think about how quickly he has grown up and changed, but usually, it’s because I automatically start making mental comparisons between his development and Marshall’s current growth.

Quinn was already pretty late with a few things.  I remember being anxious all of the time because most kids his age were crawling or walking long before him.  He didn’t start to crawl until he was a year old, and took his first steps at almost fifteen months!  This was all within normal ranges, but definitely on the late side.  Whenever I would see a post about a friend’s child at eight months crawling or nine months and walking, I would wonder if everything was “normal” with Quinn.  Turns out I had nothing to worry about.  I can hardly keep up with him today.

With Marshall, the fears have started to grip me tightly, much more tightly than they did with his older brother.  When he finally stopped his frequent extended hospital stays, it gave him time to catch up developmentally.  He’s still changing and surprises me daily.  He smiles when he sees me, he’s trying to feed himself, and I could swear that this morning he called out to our orange tabby with a crudely-formed “WALLACE!”.

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A full Marshy is a happy Marshy

I try not to get jealous, but then I’ll log onto Facebook and see updates of my friends’ toddlers who are younger but far, far ahead developmentally in comparison to Marshall, and it gets to me.  These comparisons are going to be there forever – at school, in the minds of strangers, everywhere – and I need to figure out how to deal with it.  I love looking at photos of friends’ kids, but the pang of jealousy still stings.  And believe me, I appreciate the comments from friends who follow Marshall’s progress about how happy and cute he is when he’s in his Jolly Jumper.  This is entirely in my head, and I need to stop comparing him to other kids because that will never be good for him (or, less importantly, for myself either).

Kids with Apert syndrome are always going to be different than their peers.  We always talk about celebrating differences in classrooms and how uniqueness is wonderful, but I can’t help but think that it is so, so, so much easier for those of us who don’t have noticeable differences to say that.  What do I say to you when you inevitably ask me one day why it you had to be different?  How do I comfort you when you tell me you wish you weren’t different?

All I can think of is to say that I love you and I’m sorry – but not sorry that you are you.


Surgery Update:  So, originally he was scheduled to have stents put in to ease his breathing troubles in late January, but that date was too late given his worsening sleep apnea.  Fortunately, his ENT team has moved his surgery date up to December 9.  He could be in the hospital for two weeks afterwards, but hopefully this makes a big difference for him breathing-wise.  Maybe – just maybe – we’ll both start sleeping for longer stretches.  

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Enthralled by his big cat brother Wallace
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2 thoughts on “Social Media Is Scary (and a surgery update)

  1. I have had similar worries for our son, looking at other children and seeing them enjoying one another”s company. They enjoy spontenaity,. My son becomes anxious around others, but he can spell spontanehity. He also is now old enough to articulate clearly that he doesn’t want to be different. As is clear in the book Ï read on your recommended when Marshall was ever so wee, “”Far from the Tree””, parents have so much to learn from their children. Ewan is happy being who he is and he should be happy. He is amazing! We are reading his school assignments in which the teacher may want factual exposition and Ewan will fill as much of the page as he can with his own personality (factual but also with great asides) and we glow. We are worried, but we are learning to adjust.
    On a different note, Quinn used to be shy, now he is yelling across the street that I don’t own a spiderman sweater, but that he does. You know he is the only kid on the street that remarks on this. But that’s okay.

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  2. You are the epitome of motherhood B. As you know, it also takes a village to raise a child and we are all here …..better people for having met Marshall.

    Like

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