When I'm really in the thick of worrying about Sam, I know it is hard for my friends to know what to say. My closest friends know what I need -- for the most part. I don't want my worries minimized, I don't want them to tell me I shouldn't worry (because most of them are mothers and they know damn well they'd worry too!). I want them to let me worry, but not to pity me. We have a magical little girl that fills our lives (and pretty much EVERYONE who encounters her) with love and joy. Nothing to pity there.
And, I KNOW my close friends have had moments where they felt like they put their foot in their mouths . . . you know like complaining about their kid walking "late" at 18 months or so. But really, that stuff doesn't hurt me. I know that a worry about YOUR kid is the worst worry you could ever have, so I get it. Like, yeah, we could be worse off too, but that doesn't mean I'm not allowed to worry about the stuff WE have. They are, after all, our worries. So, I get it. I get it that sometimes, my friends may have been worried that they couldn't tell me about their own mama worries, though I hope that hasn't happened often.
And, we've had a lot of well-meaning people say things like, "oh you just wait till she starts walking and you'll wish she wasn't." To that I say, "Oh no, as hard as this little girl is working to get there, I will never wish her still. Never." And that is so very true. Likewise, I doubt my friends with non-verbal children would ever wish them quiet.
But then, there's other people in our lives and I swear, I think they just lack empathy or the ability to think about what it would FEEL like to go through what others are going through (whatever it may be). Last weekend, we had a "moment" with a friend that has just left me flabergasted. Utterly and completely flabbergasted. One of our friends said (actually just to B, not to me, but he told me later and was just absolutely stunned, as was I) that her life had gotten so much "harder" now that her 11-month old is crawling and that she was "sort of jealous of [us] that Sam isn't mobile." Now, it is probably a good thing I wasn't there. Out of pure shock, I might have slapped her. But really?
It also makes me realize that this "friend" clearly hasn't listened to us or anything about our journey with Sam's delays over the last two years. Because if she had, if she "got it," even a shred of it, she wouldn't have made such an insensitive, stupid comment.
I wonder if she'd also be jealous of the 7 therapy appointments a week?
Or the number of times we've had to sit while our baby is "evaluated" on what she can and can't do (every six months since she was six months old)?
Or reading the pages-long reports that spend much more time space discussing what she can't yet do than singing the praise about what she can?
That we watch our kid work so freaking hard to do the things that come so easily to other kids? That we look at her WANTING to move toward what she wants, but having her body not work the way her brain wants it to.
The MRI under general anesthesia? (or the 24 hours afterward waiting on the results? when our stomachs churned, our hearts hurt, and our brains kept playing out what-ifs?)
The number of times we've had to hold our sweet girl down so blood could be drawn for testing?
The fact that Sam has seen a neurologist, two geneticists, two opthamolgoists, two developmental optomotrists, a neuro-ophthamologist, a physiatrist, a developmental pediatrician and an orthopedist in her two years of life? All of whom are perplexed by our complicated little girl.
Or the fact that we *got* to spend a ton of money to travel to Baltimore to the Hypotonia Center to see ANOTHER doctor and go through MORE blood work and sit and wonder and worry about the results for months on end?
Or the fact that some of those tests were "inconclusive" so we get to RE-DO them? Have Sam poked again?
Or maybe the fact that our girl will likely be starting a preschool for the disabled in the fall?
Or that sometimes, in spite of all the joy and optimism and hope that our lives are full of, our minds wonder to the worries about when/if the "cant's" will become "cans" and that makes our hearts hurt? Because all we want is for our girl, our sweet girl, to be able to do the things her peers can, without having to work so fucking hard for it.
Or the fact that sometimes, even when we are celebrating how far we've come, we still see the distance in front of us, and it is a tad overwhelming.
As I sit and reflect on that "friendship," I realize that's just not a friend. She doesn't get it. She obviously hasn't even tried. And what I want to do is send her a great big heaping "fuck you," but I won't. This "friend" comes to our lives via B's childhood friend (who she married) and that's a friendship B really values and has a lot of history, so he's asked me not to give her the "fuck you" she deserves, and promised he'll talk to his friend about his wife's lack of sympathy. I HATE sitting on my hands and not saying something to someone who has said something so disgusting. It goes against the core of who I am (which is, as my dad would - and often has - proudly declared, a "don't take shit from anyone" kind of person, exactly like him!). So, instead, I'm writing about it, hoping that the release somehow makes me feel better, because I don't need the negative energy!
So, yeah, I know, sometimes it is hard to know what to say. But it shouldn't be too damn hard to know what not to say, and this "friend" failed miserably. And, I wish it hadn't left ME feeling so crappy. Wishing I hadn't invested as much in that friendship. Wishing we'd just skipped the dinner plans with them Friday evening, so we would have (maybe) been spared that statement.
Thank goodness for my other friends -- the small group of women I think of as "sisters," the ones that love my girl nearly as much as I do (if that's possible), the ones whose hearts soar when they see a great picture of her smile on facebook, see her doing things she couldn't do a month or two ago, or hear her sweet giggle. The friends that, as I like to say (and B likes to laugh at) that just "get my girl's essence." It's a pretty fantastic essence.