I want to approach this subject delicately. Because I am risking hurting some feelings, and that is NOT the intention. But I've been thinking a lot about a topic that often comes up in discussion with other SN (special needs) parents, and wanted to chat about it a little. It is this: the things that non-SN friends say to you about you and your kid. Some examples:
"I don't know how you do it, I would never be able to do what you do"
"God never gives you more than you can handle"
"She is sooo lucky to have you as a mother"
"I shouldn't be complaining to you, it's nothing compared to your troubles"
Just a few common examples. Now, at this point, about half of you reading this are going, "Um, I've said that to you a few times." I know, I know. I GET it! I REALLY DO! You are not insulting me when you say these things, and I totally understand: what the hell ARE you supposed to say? I am sure I said these very lines myself before becoming a special needs parent. But I just want to throw out there some of the feelings I hear coming from the SN parents when we hear these lines over and over.
Let me focus on the most commonly cited phrase: "I don't know how you do it, I would never be able to do what you do." Let me clue all you non-SN folks in: WE DON'T KNOW HOW WE DO IT EITHER! We were all you before our kid came along. I used to look at parents with special needs kids and think, "My God, I would just DIE if that was my kid." The thing is...we don't really get a choice. This is the kid we were given. They don't let you trade it in for a healthy one (I know, I tried). So please, just trust me on this one: You WOULD be able to do it, because there is NO OTHER CHOICE.
And I just want to make a quick note about the last one on the list. See, the thing is, I am still your friend (at least I hope I am). Was I someone who you went to with your troubles before my daughter was born? Then please, PLEASE, do not limit our friendship because you think your troubles aren't worth my time. We will no longer BE the friends we were if you no longer treat me like the same friend. I do not live in a vacuum. I remember when trying to get my first child to eat all her dinner with the most FRUSTRATING THING IN MY WORLD (it still is many days!). I am totally able to put things in perspective, and I am NOT turning up my nose at you because you are complaining about something so "stupid". Are we friends? Good, then let's just be friends.
Another perennial fav is to send a new special needs parent an inspirational quote or essay. I received many, many copies of Erma Bombeck's "The Special Mother" (http://www.our-kids.org/archives/Special_mother.html). I gotta clue you all in a little bit though: Erma did NOT have a SN kid. So while that little essay looks great on the surface, so supportive and complimentary of your new SN friend, I personally want to scream every time I read it. Because if being that wonderful person is what got me my SN kid, then I DON'T WANT TO BE THAT PERSON!! I would rather be a total piece of s*&%, poor excuse for a human being if it meant that my daughter was going to have the chance to make her own way in the world. That is a pretty crappy trade-off, if you ask me. I am not interested in "bettering" myself at my child's expense. And even something like "Welcome to Holland" (http://www.our-kids.org/Archives/Holland.html), which IS written by a SN mom, rubs me wrong way because I am a total Italophile. I LOVE ITALY. It is my second home. I DON'T WANNA GO TO HOLLAND!! I don't like unexpected turns in the road, I'm a planner, I don't like to "roll with it". So while I know that that particular essay is a great favorite of many of my SN friends, it still isn't top on my list
Anyway, this is kind of degenerating into a rant, and that wasn't the intention. And I would like to take a break in my narrative to once again repeat: this is not intended to hurt the feelings of those of you who have said these words to me. They did not insult me to hear, I completely understand where you are coming from when you say them to me, I am just taking a cerebral walking tour.
All of us SN parents approach our new life with our kids in different ways. I have a lot of friends who are very sensitive about their kids and their troubles, and do not appreciate when someone tries to make light of it or joke about it. For those of you in my life, I would like to say this to you: I am not one of these people. You are probably reading this diatribe going, "Ok, Kate, I hear you. But what CAN I say to you?" Let me give you a few examples of things you could say that would actually brighten my day:
Me: "I'm exhausted, Anabelle was up all night puking."
You (good answer): "OMG you poor thing, I hope she's feeling better this morning"
You (better answer): "Can't she save that s%^* for the daytime when the nurse is there?"
Me: "The doctor told us Anabelle will never walk"
You (good answer): "OMG, I'm so sorry, I cannot even imagine how you are feeling."
You (better answer): "Of course not, you know that diva needs to be carried everywhere she goes. Next she'll be demanding a sedan chair and servants to carry it."
Me: "Anabelle had her first seizure last night"
You (good answer): "I'm so sorry, I know you have been praying they would never come"
You (better answer): "I guess the princess thought you were getting a little TOO comfortable with your new life. Must not have been getting enough attention"
Ok, I know not all of you are sharp-tongued like me, it's probably pretty unrealistic to think those are the responses I'm going to get. I'm not saying the things you all have been saying to me for the past year are bad, I'm just tossing around a few thoughts from another perspective...
So don't hate, just some rambling thoughts for the evening. I'm just sayin'...