Tuesday, March 15, 2011

Friends of ALL Sorts and Sisters

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.


Anonymous said...

There really is no excuse for that. I'll admit to not always knowing "the right" thing to say to friends that face troubles I haven't, but I completely agree that this crossed the line of being actively inappropriate and mean-spirited. While it hurts to feel betrayed by someone who has been a "friend," take heart in the fact that you and Sammie have a world full of true friends that love you no matter what. As Sam's protector, you should feel entitled and obligated to cut people out of your lives that don't deserve to be a part of it!


Kristen said...

could have written this exact post. so glad to have you as a friend (even though we've never met)!

Gina said...

I needed to read this tonight. My L has a tummy bug and I'm all kinds of worried but this put things into perspective.

I put L and G into a school for kids with disabilities because after observing eleventy million preschools, I felt like they'd get the best education there. I have never regretted that decision. I hope you love her preschool.

JenandTony said...

Comments like that are so frustrating. I think for the most part people are well meaning and just don’t know what is the right thing to say. Comments of the “I could never do what you do” or “I don’t know how you do it” flavor, while annoying at times, are for the most part well intended I think. But this woman is clearly 1000% clueless. When a little girl is going to therapy multiple times every week in the hopes of someday doing something as”bothersome” as crawling or walking you have to be totally oblivious to say that you’re jealous of the parents. Implying that you somehow have it easy. I mean, really?? Sorry she ruined your evening. Next time they want to make plans I think you should be busy washing your hair or something. Here’s to having friends who “get it”!

Ellen said...

I hope this blog did help get rid of some of the negative energy. Personally, I think she deserves the FU....because it wasn't her first tactless comment. I regret not giving it to her myself that night.

However, time to move on and just hug and kiss that special little girl. She has a smile that melts your heart, a sweet personality, quirky sense of humor (no doubt from B) and is such a delight to be with.... I think that is what your "friend" should be jealous of.

Tooner said...

I have a disability and I would take a "normal" body for anything and when people say that I'm always happy it really annoys me because I think I understand more than people really give me credit for. They don't tell me stuff or do certain things because I'm in a wheelchair. Like, for example if I was a bald person which I am not I bet you people would say, you can't go to the park because you are in a wheelchair, you will catch a cold, etc. Or when people die they go, don't tell her she won't understand. Well I know Sammie is a little younger than I am but you can tell her stuff age appropriately.