The Bubble You Can’t See

Here’s today’s BIG revelation: sometimes people make mistakes. Aren’t you glad you found this gold mine of pearls of wisdom in the blogosphere? Someone very recently made a HUGE mistake with one of my kids. I put up a blog post about it, but then I took it down because I thought that it might have come across too harsh, and I’m really not trying to aggravate people just for the sake of running people off (only one person reads this blog besides me anyway….). I had written about it just hours after the incident and I was still understandably pretty emotional so I wrote from the heart; the very passionate, Mother Bear heart that was more than ready to shred that person who had wronged my child. The truth is, I’m still very much ready, willing, and able to do that (and more) to that person today, but I decided to pull the post just to be safe. (And just for the record, because I’d be DYING to know if I were the one person reading this blog, it wasn’t a mistake of moral nature. It was just a very, very stupid and insensitive mistake from someone who was supposed to be taking care of our kids, and because of our daughter’s disability it has made it very difficult for her to move forward and “forget about it”, in the way a typical kid could.)
The whole incident got me to thinking about how tough it is for us parents of kids with special needs to let people “in”, to get close to us. Our kids (especially if they act different or look “different” any way shape, or form) are OFTEN and frequently made fun, stared at, pointed at and talked about in the middle of stores, restaurants, theaters, parks, etc………., pretty much anywhere you might go with your child. Think about that for a moment. You’re cruising the grocery store with your child but before you get through the produce section you notice eyes on you and you look to your left and a three year old is staring open mouthed at your child, who’s spinning in circles at your side and talking to a piece of string he winds up around and around his finger, over and over again. You move along and as you’re reaching for the bananas, you notice an older woman, probably your mom’s age, staring sharply at your child and saying loud enough for you to hear, “I would never take my son out in public with hair like that!”. She doesn’t know that your child can’t STAND to have his hair brushed and that you had to fight a 45 minute knock-down-drag-out-brawl just to get him DRESSED that morning and that taking him to the grocery store was absolutely the LAST thing you wanted to do, but on this day you had no choice. Your choice? Your four and a half year old wearing pajamas out in public that were two sizes too small and worn threadbare because those are the only jammies he will wear or, having his hair kind of brushed, but still an unruly mess. You chose clothing.
These awkward situations happen EVERYwhere and almost CONSTANTLY, at least with me as I’m out with my kids. Whenever we walk into a place and I see other children, I immediately go on high-alert. It’s one thing for a kid to glance over and see that my son looks different. That I can totally understand because our eyes naturally notice that which is different in our environments. No biggee. But what I can’t deal with are gawking stares. So, if I see that scenario begin to unfold, I go into Secret Service mode and put me between the starer and my son. If (when) he/she continues to stare, or worse yet, cranes their neck around my body to get a better look at my son, they get the full Death Stare From Hell. I’m honestly surprised some of these kids don’t just spontaneously combust after encountering one of my Death Stares From Hell. And these situations don’t just happen with my son who “looks” different. Kids can smell “different” a mile off, so my daughter gets her fair share of sideways glances too, especially if she’s talking to me or stimming in public. Living like that can be exhausting, but more than even that, these situations teach us that the world is not safe for us. Not for our kids and not for us as families.
So we begin to withdraw. It’s not exactly easy to get our three year olds’ wheelchair in and out of friends’ houses, so we stop getting invitations to birthday parties and family game nights. Or this VERY COMMON scenario: “The church we used to go to didn’t know what to do when our five year old started running out of the Sunday school room and they told us it was a parenting issue. And at this point he wasn’t potty trained and no one was “equipped” or “trained” to deal with “that kind of child”, so we just stopped going to church altogether.” One time when our son was about five, as we were dropping him off at his church classroom, the teacher asked me (she wasn’t a regular teacher we recognized), “Is he going to be trouble?” I was completely taken aback and flat footed in my response. I think I looked to either side of me, assuming she was talking to someone else, because at age five you could use a lot of words to describe Hayden, but “trouble” wasn’t anywhere close to being on the list. I was dumbfounded and I think I stammered out something like, “Uh, no….why do you ask??” all the while hot tears were welling up inside me, threatening to spill out in front of this ignorant woman. “Well, you know, those kids can have “problems”” I cried for two hours after that, and these situations are but a drop in the bucket of countless experiences that drive many of us in the disability community right back home, because it’s easier than dealing with the ignorant and often, mean spirited general public. And then sometimes the rejection and shunning happens WITHIN the disability community! Just because a family has a child who has CP, it doesn’t mean their other children are going to understand or want to hang around our child who is 11 years old, non verbal, and likes to hug everyone. There are days when we fall into bed battered from all sides.
When this happens something unhealthy and with long lasting effects can begin to unfold; we as families become more adept at looking like we’re doing fine without as much contact with the outside world and former relationships and friendships, and then we start to believe we actually are doing okay; that it’s actually easier for us to not go to anywhere or be invited anywhere, or to have a bunch of friends in our lives because it’s less of the day-to-day operations of our lives that we have to explain and the less we have to explain, the less we have to go back into that grief cycle when we’re forced to engage in conversations around our teenage son or daughter who may never _______________________ (fill in the blank).
The solution? The very thing we’re terrified of: developing connections with safe people (it’s finding the “safe people” that’s the tricky part). But we absolutely need to venture out and be connected, especially where we worship. (We are spiritual beings living in a physical world, not the other way around, so you always hear from me in this blog how when you let God love you completely and totally, the way He designed, your life will never be the same—in a REALLY, REALLY good way!). The reason for this is that within our synagogues and churches God can talk to us, heal us, care for us and just generally love on us through His people. God is ALL about relationships and His word is a giant love letter to us (go ahead, read the Torah and other parts of the Old Testament and tell me I’m wrong). And being in healthy relationships with other families (even if they’re not in the disability community and don’t fully understand our daily lives) is important for us emotionally. God knows that when we’re withdrawn from life-giving relationships for any length of time we begin to atrophy emotionally, so He’ll use all sorts of circumstances and people to push us out of our comfort zones on the couch. Right now our family is in a Season, with a capital “S”. We are living with family, who for the most part don’t have any life-giving relationships in their lives, and it’s been that way for a very long time. We’re not here to “fix” anyone, only God can do that. But we do want to be examples of people who are letting God heal them from the inside out; we want to be living examples of Freedom and of people who are willing to take risks. Breaking down walls.
We started going to a new church when we moved to Our Town, and as God would have it, we CAN’T melt into the woodwork because these people won’t let us. They actually CARE about our little family. Crazy, right? Since the MINUTE we walked in the door (on alternating Sundays by ourselves so the other person could stay home with the kids), we have been showered with GENUINE, real live caring support. I of course, having a master’s degree in the television show, “24”, suspected a conspiracy immediately. “Run, Forest Run!”, alarms in my head blared. But these people wouldn’t be put off. They wanted to learn sign language to talk with our son, people spoke directly and intelligently with our daughter, and actually wanted to know about her. The pastor still seems genuinely happy to see us. And then, just a couple of weeks after joining a Bible study (the first one in years) we were hurled back into the medical mode when our son needed surgery and then 25 days later, he needed another one. What could we do? We were already showing up at these people’s house and they seemed to genuinely care. I wanted to bolt, to not share anything about what we were going through. We could just batten down the hatches and close ranks around our little family like we had done so many times before. But there was a still small voice that said, “It’s okay. These people may not “get” you, but they really love ME and they want you to be yourself”. Wow. Kind of hard to argue with that.
So here we are; pretty raw from two major surgeries in less than a month, still living with absolutely NO idea where we’ll live or what we’ll do for income after my husband finishes work on his late grandmother’s house, while trying to make things work within my husband’s family. We’re definitely in a desert, and just like God did for Elijah in 1 Kings 17, God’s providing a brook with running water and daily food for us in the form of new friends who are breaking through the bubble.

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