Previously Unpublished - Socially Ignorant

The post below was written August 14, 2008... almost exactly three years ago. At the time, I wrote it to express myself, not so much to others, but to get some things off my chest. I was still fairly new at blogging, and wasn't really ready for the blog to be a "heavy" place - - I was still really finding my true voice. I shared this post with my dear friend, Hannah, so I could talk (email, really) about it and deal with some of the frustrations and fears I was having. But, it never saw the light of day on this blog. It's about real things that happen in our everyday life. And, heavy or light doesn't matter to me here... real does.

Yesterday I took the kids to a park that was new to us for a change of scenery and to explore one of the few accessible playgrounds in our area. In addition to the accessible features, it had a splashpad that Gracie, though feeling pretty rough, really enjoyed. She had the freedom to wheel herself through the water spouting from the ground. It was in this, of all places, that for the first time I heard a child (whom I guessed to be right around Gracie's age) use the word "retard" while looking directly at her... and within earshot of my son. Thankfully, Preston did not seem to hear him at all. But, I did. It's one of those moments that will be burned on my brain and heart forever. It was a moment that, for a very brief second, I was so glad that Gracie couldn't hear. And, it instantly brought me back to this previously unpublished post from three years ago. It reminded me that I have to take some serious steps in educating and preparing my son... and myself... for this is only the beginning of a very real and heavy journey of helping Preston cope with (and hopefully, along with his sister, positively influence) the social ignorance in this world.


August 14, 2008

“You sure have your hands full.”

I can't tell you how many times I have heard unsolicited comments over the years - - and especially that one lately... from perfect strangers who really seem to have the need to express their opinion. It's always interesting to me to hear it and the varying tones with which it is spoken.

I am sure I often look quite disheveled in the triple digit heat after having unloaded the big double stroller from the back of our giant, gas guzzling SUV (sorry greenies... I offset our environmental footprint in other ways!), loaded the suction in the bottom (because I can't load it once the kids are in their seats), situated Preston in his seat with a snack and a sippy cup, placed Gracie in her seat (usually followed by a quick suction and a wipe-up of her neck) and then turn off the car (because the air conditioning needs to run until she's out of the car) and grab wallet, keys, etc. Depending on their cooperation level, it can be a long time before I actually leave the parking lot and enter the store. Then I have to shop, pay and reload my little crew. I am sure it's quite a site... and yes, my hands are quite full.

I heard the words from my husband tonight... when he checked in from the Academy, lovingly said with the "I don't know how you do it and thank you for doing it" kind of tone. Yet, too often I hear a hint of pity... sometimes even a "Thank goodness it's you and not me" kind of tone. I don't dwell on these comments... these judgments. They are often said by a person who was caught staring a little too long at my daughter. Make no mistake; I don't ever forget that she has special needs... I carry equipment with me wherever we go that won't let me forget that... but I don't actually think about it - - I just live. And, I really don't remember that she looks different unless I see her reflection in the mirror. When I look directly at her, I just see my sweet daughter.

I should preface by saying that I like to believe that most people, are in general, kindhearted. However, being kindhearted doesn't mean that people aren't also a little ignorant. When Gracie was younger (before she had her trach and the extended hospital stay that altered so much in the way of development for her) we used to try and take her out as much as possible... and for a while (until we grew used to it) it was something we disliked doing. People stared then, too, even without the extra "accessories." Once, in the home section of Macys, a woman backed into a display table and knocked over a crystal vase because she couldn't keep her eyes off our daughter (who was in her car seat and stroller with her g-tube vented to keep her from vomiting). John used to get so furious. Sometimes... rarely, now... we both still do... but it is rare. We've learned to handle it. We know that it comes from a place of social ignorance, not a lack of kindness... not usually. (I have had a complete stranger tell me that Gracie's disabilities are a direct reflection of the sins of her parents and that if we turned ourselves over to God completely, He would heal her. Can you even imagine? Not only do I find that to be a horrific and cruel thing to say - - what kind of God would harm a child to punish the parents? Not any God I can believe in. And if "healing" her were only that simple...)

Most parents look forward play dates at the park - - bonding with other parents while they watch their children play together.  That didn’t happen for us.  The park wasn’t a “fun” place to go; it was only a reminder of what was different in our lives… and a reminder that many people don’t know how to handle themselves or their innocent, teachable children, in the face of a social learning opportunity.  Children were often tugged away when they would make inquiries about Gracie.  They would ask, “What’s that tube?” or “What’s in her neck?” or “Why can’t she walk?”  all of which are innocent questions that were (and are) perfectly logical for a child to ask.  I love it when kids ask me questions… but when their parents don’t give them chance to hear the answers and ask more questions, a wonderful teaching opportunity becomes the wrong lesson learned.  By being discouraged from asking and learning, children are being taught that Gracie, and any other child who is different from them, is scary, weird… or worse.   Perhaps because of their own social ignorance and discomfort, parents who tug their children away from these types of situations, are, in their minds, doing so to “protect” Gracie and me from what they perceive to be an awkward situation.  In fact, what they are actually doing is failing to teach their children crucial lessons about the “differently-abled."  And, by tugging them away or shushing them, they are teaching them to be less accepting and afraid.  Needless to say, there wasn't much socializing happening at the park, but not for lack of effort.  Often, other parents would mutter a quick "hello" in response to my greeting and then quickly avert their eyes. I can remember over two years ago, another mom talked with me for a few minutes and I felt like a "normal mom" at the park for the very first time. I don't say this in self-pity in any way... it's just what our reality was for so long.

When Preston was born, it was such a strange thing to be out with him (and not Gracie) and have people stop to "coo" and "ooh and ah" at him. No one has tripped over themselves and a display table to catch a glimpse of him. No one has ever stopped to tell me that God gave him to me because I could handle him and the challenges that he'll have in life. No one has ever told me that He picked me to be his mom because I am the right person for the job. These are the things that strangers who didn't ignore us would say about Gracie. Such a profound difference... a contradiction that I really can't articulate.

Tuesday I took the kids out and ran a couple of errands - - one of which was to Babies 'R Us. It's the first time I have had both kids in that particular store. It can be an experience to go into a baby store with a disabled child. Some people pay no attention... that's good. Some people are very kind... that's good, too. But a few people (usually expectant parents) will literally look at you with fear in their eyes... pleading with whatever God they believe in to not let "that" happen to them. I can see it in their faces... and I've learned to let it go. But on Tuesday, I think my son sensed something from one of those expectant parents who stared way too long at Gracie. Obviously, at fifteen months, I don't think that he can intellectualize why someone was staring at her (and maybe he thought the woman was looking at him) but whatever he thought about it, he didn't like it. He made this grunting/yelling noise that he only makes when he's mad or frustrated - - and his "stink face" accompanied it. He made the noise three times... and she FINALLY smiled uncomfortably and said, "Wow, you sure have YOUR hands full." I just smiled and said, "Yep, sure do." I sort of wanted to say, "Yep, sure do... and you should continue to stare at us so you can remember what you are witnessing, for I stand before you with my hands entirely full - - full of a love that you can't possibly comprehend... and you should be so lucky." But, of course, I didn't, and that would only be passing judgment on her life, which I obviously know nothing about.

What she made me realize though, is that while I've known for a few months that Preston is keenly aware that his sister is different, he is now sensing things about the reactions of strangers. His awareness will only grow as he does and it is up to John and me to teach him how to respond to others and answer the myriad of questions he will surely have someday. And, I have to always remember that he is keenly aware of my behavior and that to be a good parent and a good example, I have to be dignified, kind and attempt to educate the ignorant... even when all I really want to do is put them in check in a very undignified, unkind way.