There's a post going around Facebook; it's the "Have You Ever ..." version for special needs parents. It's a mixed list of "Have you ever ... Diffused a Meltdown or had to <insert whatever> for your child." I reposted it because I thought there was a little community in it. Some, "Hey, you aren't alone!" Most people responded by saying they had done all but three, maybe two. We've done them all. All nineteen on the list we have experienced to some extent. My husband said, "WE WIN! What's our prize?!" Special needs and all that comes with it gives us community, the "I get it" with each other.
But "have you ever" considered just maybe we are not only our own little community but a special needs city, a Special Needs City on a Hill?
I posted this list after a night of sickness in our house. Sickness from our guy who has special needs and an ongoing disease that's causing side effects of daily sickness. All day, every day. One of our other children has had that run of the mill stomach virus that just won't leave. Just when we, and he, thought it was gone, nope. He took a flying run down the hallway to get to the bathroom and almost made it there. Almost. And then there is the dog. Yes, the dog. Even she is now in on the fun. Aging doggies who leave piles of ick? Makes you want to run right over and visit us, right? Bring your hazmat suit.
There is community in our special needs world that others may not ever understand. We go to bed nights whooped with the thoughts that others, even those closest to us, have absolutely no idea what goes on in between these walls. We rarely venture out of them because who wants clean up on aisle five?
We aren't pretty when we go out. It takes planning. Do you have the medical bag, extra IV fluids, things for those emergency bathroom moments? Extra everything, actually. Just getting in and out of the car takes planning, more than one person to help, making sure all the tubes and cords aren't caught on anything. It's an orchestrated event. After all this planning, my introverted self would stay home nine times out of ten if given the choice. Community is hard. This little light of mine? Hide my light under a bushel, please.
But what happens when we do go out? What happens when we leave the comfort zone of our little world? What about the community of people who aren't on the list of "Have you Evers?" What are we, and they, missing when we don't shove ourselves out there? We've been called to be a city on a hill, a light that cannot be hidden.
I don't know about you, but when we go out, there is no hiding us. We are ob-vi-ous.
I will tell anyone and everyone, "I'm fine." Even when everyone and the dog is puking their guts up. Maybe what the community needs to know is we aren't fine. We are struggling over here. We have done every single thing on the "Have You Ever?" list and we need you to come to us. We can't go anywhere. Please come here. And just know it isn't pretty. Hold a puke bucket. Get messy with us.
Matthew 5:14-16 is the verse about being a city on a hill, a light that brightens the whole house. I love how The Voice's version goes on to say, " so men and women ... may see creation at its fullest, may see your devotion to me, and may turn and praise your Father in Heaven because of it."
Maybe we go there. Maybe they come here. Either way, we are a City. We have a special needs community with each other already. We know what each other is going through. We get it. I see you on that "Have You Ever?" list. But do they? I'm becoming okay with being different. (Finally, it's only been how many years?) We've been made different, a Special Needs City, and we shine bright. Shine so others may see creation at its fullest. Shine so others may see our devotion to our Father in heaven. Shine so others may turn and give praise to Him because of it.
Don't worry, we will make sure the stomach virus is well gone before we come your way, World.
My husband and I are parents of all boys. One of whom is a young adult with both physical and intellectual disabilities. I don't always know what I'm doing as I parent these guys. But what I do know is God is teaching me big things through our trials that I probably would have never learned without them. You can find more from me at www.mostlyeandme.com, on Facebook, and on Twitter @stefmckeever.
