This past summer I wrote a series of very emotionally raw e-mails to a group of friends that I no longer get to see on a regular basis after I started to go all Mount Vesuvius over some things I was experiencing. I’m pretty sure my occasional e-mails are the only reason they know I’m not dead. Some of the friends who got those e-mails were aware of some of the things our family was experiencing up to that point as I chronicled them from time to time, but I often wasn’t as blunt about the emotional impact all of it was having on me. I had just assumed that this would be apparent in many cases from the descriptions of the events themselves. I was surprised to find otherwise.
For those of you who didn’t get those e-mails, I’m going to quote part of one:
“On Sunday, C- D- in Relief Society had mentioned how if all of us sat in a room and put our trials in our basket, we’d take our own back because we’d look at other people’s and realize ours was easier. I respectfully disagree with that. Don’t get me wrong, there are plenty of things I’d not want to deal with, but quite often I find myself looking at other people’s challenges these days and I think, “you know, I’d gladly trade you but…” I’d take mine back because I don’t ever want anyone else to experience what I have been experiencing the past few years or to feel like I have been feeling.
When I speak to people on disability related issues, I’m as frank as I can be without completely selling anybody out by name or throwing them under the bus if I can, because the truth is, I know what it’s like to feel devastatingly alone and on your own dealing with things nobody else wants to deal with in the most difficult of circumstances without backup of any kind. Any kind. And I am not here to judge anyone, because more then anyone, I know the challenges involved in what I do, and if people feel like that’s not for them, it’s better for them, my son, and us that we respect that. But I don’t want other people going through similar things to feel like they are not understood, or these things are just isolated to them.”
And they are not isolated to me either. A few days ago I was walking my daughter home from school and was stopped by a very sweet woman in my neighborhood who read my Autism shirt and started talking to me about her family. As I listened to her story, and I heard her pain, I can honestly say it sound’s like she’s had it far harder then me and my heart bleeds for that, and she has been on my mind ever since.
Her crisis was quiet to me until she spoke up, just as my crisis has been quiet to the vast majority of people around me, no matter how eye catching we’ve been at times. I think that has to change, because every family loving and supporting an individual with disabilities needs compassion and understanding from the community around them to successfully do what they do. And for those of us who parent children with more extreme behaviors and challenges, the kind it is harder for people to accept and be patient with, that need is even more desperate.
As each of you knows, I am not a perfect messenger here. Flowers don’t spring up behind my footsteps, birds don’t flock to my shoulders when I open my mouth to speak, and that’s not an umbrella I’m holding as I “fly” around town, so to speak. Though I really do try hard to be a decent person, a few people might even think it looks more like a broomstick then a car from time to time. I am like many people…doing the best I can, but flawed in my own ways that I am steadily trying to work on. I don’t want that to lessen what I have to say, because despite my flaws I still think more people need to be talking about these things and to be honest, it has been the knowledge of my own failings that has made it so hard for me to attach my own name and face at the same time to our experiences publicly for so long. I hope you can be patient with those imperfections and still take something from my experiences despite them.
Nobody plans to be the quiet crisis next door…but I have been. For nearly 6 years now. In my heart, I’ve always intended to be there for each of you, even if my circumstances mean I can’t be. But the truth is, the moment our beautiful son was placed in my arms on his second day of life, a Pandora’s box of seemingly innumerable tasks and circumstances have been pelting at me, often with disorienting force. Every day I fail to accomplish all the things I should.
Every. Single. Day.
And every single day, no matter how together a few people seem to think I am, I feel like a failure on some level for it.
I think it is also important to say another family’s crisis may look very different from mine. But I’m going to tell you what our world has looked like, so that when you see something similar to our family’s circumstances in someone else, you will understand what things could look like to them. Because even if they’re not saying anything, they need your love, understanding, acceptance, and help- when you feel able to give it- in their lives. I may not live near you, and yet someone who desperately needs your love and understanding almost certainly does.
Our challenges didn’t start instantly, they trickled in over night with a symptom here and a problem there for the first few months and then became a raging flood by the time our son was 13 months of age. It took a few years to gain all of the names we currently have for what was causing this deluge in our family. You may have heard me name these rivers before, and if you haven’t please, please remember that this list is not all my son is:
Fetal Alcohol Spectrum Disorder (it shouldn’t matter, but for those of you who don’t know our family, he’s adopted, I did not have anything to do with that one, and I am certain his birth mom didn’t know what was going to happen to him with this, so please don’t mentally throw stones her way either), Sensory Modulation Disorder, Autism, a duplication on the Q arm of his 5th Chromosome, and Sotos Syndrome.
Like many families, even if we didn’t have all of the names at first, we were already in the trenches helping our son face the symptoms. The onslaught has been relentless, and sometimes it feels like we’re facing a mythical Hydra, where every challenge we conquer sprouts a few more in it’s place.
For now I’ll be posting one item a week not in any sort of chronological order, and updating the tabs and our son’s conditions as time permits. Our daughter will also be sharing a post with her perspective on what has been happening once a month…I may post something shorter of my own like book recommendations the same week her posts run.
So until next week, yah… you probably won’t be seeing me around unless you run into one of our therapy outings. Although, since our family broke up with Amazon last month, there are certainly a lot more opportunities to run into us out and about then there were before 😉 But even if our paths don’t cross, I will carry you with me as I always do everywhere I go…in my heart.
