Saturday, October 23, 2010


There seems to be a huge misconception that Jeremy and I are comfortable with everything that has happened in our lives in the last few years. 

Let me clarify.  NOOOOOOOOOOOO.

I've been thinking about writing a "What to say to someone when their life doesn't fit the mold, and then some" script.  Seriously.  I have come up with a few pointers, but not an actual script. Because another special needs parent may not want to hear what I want to hear, if that makes sense.  But what I have gathered, in this "new-age" idea of embracing our children and pushing them not to their limits, but to their POTENTIAL, is that we don't want to be ignored.

I was raised to tell the truth, and while I fell short of doing so when I was younger (don't we all), I am quickly making up for that stint in my journey as a mom.  AJ is complex.  His story is not simple.  It took me a good year to share his story in just one sentence.  Add in that I am naturally a very detailed storyteller, you've got a motor-mouth on your hands.  Most recently I've found myself refraining (I know, exciting right?!) from sharing things when people have made casual comments....

And it kills me. 

I feel like I am portraying AJ as an incomplete person.  This may sound wildly strange to everyone reading this, but its true.  And then I thought about how I think part of my sharing AJ's story, with details, is my way of trying to help people understand.  Knowledge is power, right?  I dug further into my own noggin and realized that sharing AJ's truth helps me heal the wound that was created when no one told me what was going on with him. 

Didn't I say I was going to talk about all of you? Gee Whiz.

It is no secret that sharing AJ's story, or anything, like "Hey, my kid had a seizure in the car last week and I called 911 on the side of the road," makes other people uncomfortable.  But honestly, I encourage you to stop and sit in whatever words are spoken to you.  Don't run, because you feel uncomfortable.  Yes, I know it is shocking that I, the person sharing this devastating news, would realize that you are going to be uncomfortable. 

But let's all think about this for a second.  How long does your lack of comfort last?  A few seconds?  A few minutes?  We may loom back into your brain every now and again, but do we dwell there?  No.  Be uncomfortable in that moment so that we, the people experiencing whatever was just said, can feel less isolated and less like a freak of the normal world. 

People tell me, "We don't know what to say."  Well, you can't fix it.  So start from there. Don't try to fix it. But say something.  At least something.  "I don't even know what to say" is an EXCELLENT thing to say, if you don't know what to say.  Why?  Because you are aknowledging my world.  Aknowledging my pain, my act of reaching out to you. Staring, or ignoring, crushes the heart.  Ok, at least it crushes mine.  Is it so much to ask you to be uncomfortable for a few seconds so I can feel some relief in numbers?  I don't think so.

Being a special needs parent has given me a completely different outlook on life.  It really makes me sad that I see so much selfishness...everywhere.  It saddens me that AJ's "stuff" freaks people out.  He's still AJ.

While I've posted before on how it is sometimes irritating to hear that this was "God's Plan" or His Purpose, or he won't give you more than you can handle...there is a reason that can be bothersome.  I, as the person living this story that made you so uncomfortable for a few seconds, definitely feels like I've got more than I can handle.  Those words don't act like magic fairy dust or ruby red slippers and make it all disappear.  They don't make me feel better.  Well, Heidi, you certainly have a crappy outlook on life, don't you?  No, I don't. The Big Man Upstairs and I have been dukin' it out for a long time, and continue to do so. And no I'm not sharing that story.

Oh Heidi, you've never been on the other side.  Well, yeah I have. I was recently in an uncomfortable situation myself.  I was with an acquintance who clearly just needed to blurt it out and have someone there for her.  I was uncomfortable. Really uncomfortable actually.  I paused and then said "something"...and she started to cry.  I recognized the type of tears that were flowing and stayed put as long as she needed me.  We didn't say anything else to each other, we were just together.

That my friends, is comfort.


  1. Amen, sista.

    Love it when you write posts like this.

  2. I struggle with how to describe Sunshine too. By the time I get finished with "she has XY&Z and we think there may be QF&W as well" my time is up. And I feel like it doesn't represent what an amazing person she is in spite of all of her labels. But, if I don't explain at least a little of what is going on people will look at her strangely or may not be as patient with her (which we really need them to be since her social skills aren't always the best - obsessive hair pulling for example!). I want people to see Sunshine as a person but I also want them to make allowances for the fact that she's a different sort of person. Hard to explain that in a short conversation (especially one with someone whose kids have never had any other medical need than a hangnail!).

  3. Excellent post. You know I never ever post, but I had to tell you what a great post this is! I share in your frustration. Is AJ different yes he is. However, we definitely need to remeber that we are parents of a very SPECIAL needs child. The key word being special. So is he different, absolutely but we all are. The difference is that when you have a special needs child you truly have a SPECIAL child. Thanks for being honest and being such a Wonderful mother!!

  4. Please know that us Mom's with complex special needs kids get it. Its tough though when most of the other people in your world don't. My son is also adopted and deaf. The deaf part I knew about ahead of time the brain damage and behavior problems I did not. I love him, but its not something I would have chosen and its been very hard. Please know that while the numbers of people who "get it" are small, they will support and be there for you. Thanks for your post


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