This tale involves things that can haunt a person without being supernatural. Of course, I would never want to scare another parent whose feet are freshly placed upon the path of parenting a kiddo with significant disabilities. But I cannot change that I have been witness to an emotional crime scene, a missing person’s report, a “who-done-it”… all while presiding over the changing of my life into the socially undead and the resuscitation of a heart pieced painfully back together again.

If you’ve been reading my blog for a bit now, you may have noticed that I rarely mention anyone who isn’t in our nuclear family (consisting of myself, Andy, Hannah, and Tony) or a treasured member of our son’s therapy team. There’s a very simple reason for that- it’s because I rarely have time to see anyone else. Perhaps one of my awesome in-laws called in the first missing person’s report for failure to show up to family functions or special occasions.

I have an amazingly talented and sweet collection of in-laws that rarely if ever see me/us. One of the last things I participated in as a group with them was a quilt block of the month challenge that Andy’s sister Kathy invited everyone to do. Kathy creates beautiful quilts, and I was very much inspired to learn what limited skills I have in this area after seeing a few of her creations. Halfway through the quilt challenge, Tony came to join our family, and I ended up needing to fake out half the blanket with crazy quilt blocks to get it done by the end of the year. How prescient that ended up being, as one line in my life after another seemed to plot it’s own pattern, dictated by the ever growing needs of our new little man. And, if the quilt hadn’t been slated to go to Hannah, I honestly might have just stuck the unfinished blocks in a box and waved a white flag over that project.

Those of my friends who live locally also know that their chances of sighting a Sasquatch are certainly greater than the odds I’ll make an appearance upon receiving an invite. Somewhere in the hurricane of words that has flown forth from my fingers each week, I hope each of my loved ones has been able to piece together enough of the remnants of the past to understand a bit better why. And for now, Tony needs two people to assist him in most therapy settings…and I’m person number two. And when nobody is available to work with me on habilitation, I do that solo because his future will be a lot more bleak without that extra support in learning skills. No insurance, regardless of the benefits they provide, covers a second person, we can’t afford to pay for another one by ourselves for the sheer number of hours of support his level of disability requires, and my son is moving forward with that support. We see this all the time, which in turn helps me to get up when my every fiber is whimpering from exhaustion, or a new problem arises, and do all of it over again.

I think within the next year we will see the point where a single person can work with him in many settings, but until then I’m an unpaid member of every therapy service provided to him. And every moment I have that’s not devoted to his assistance must go to Hannah or Andy because they are critically important also, and that’s all I have time left for. No, my story hasn’t been featured in an obit yet. But for most of the people formerly in my world, I’m still missing and, necessary though it is, my heart is still being pecked to pieces because of it.

Countless hours of therapy cannot excuse all the vacancies in my heart. As I was reeling from the intensity of Tony’s early sensory processing disorder challenges and fighting health battles of my own, many people I knew approached me with unsolicited offers of help. I rarely asked people on my own because I knew the extent of what I was dealing with was more than I could reasonably ask of most people. I would explain Tony’s needs at that time and assure each of them that I would understand and support them in whatever decision they made about helping. Most backed out.

This, I honestly understood. I will always honor the comfort levels of anyone who interacts with Tony or our family. But I will not articulate every hurt that ripped through me when individuals began to avoid me after deciding his challenges were more than they felt comfortable being involved with. I still wanted these people in my life, I still valued their roles as acquaintances and friends. But I can only guess they may have felt too embarrassed after rescinding their offers and this was what they needed to do for themselves to feel okay.

The pain was honestly more than I could process in the moment on top of everything else I was going through, and I had to metaphorically rip out the shreds of my heart, cauterize my emotional vessels so that I could focus on the needs before me, and animate myself to continue functioning with the mental lightning provided by an intense desire not to fail my Tony, my Hannah, or my Andy. I know people may want to know, but I will never, ever say “who-done-it.”

I will not detail all of those scenes that traumatized my emotions for many reasons. Bringing the past back to life is sometimes painful for me, and I genuinely believe everyone involved is doing the best they can in any given moment…and that one moment in time should generally not be used as a definition for anyone.

And, no- I’m not physically dead. Yet. But socially, as many of you know, I may as well be. I see a couple of you occasionally at church, but usually I’m so involved helping Tony get through the environment that this statement should be read as “I physically saw” them.

Sometimes if Andy has been the one to go home with Tony, I do get to have a few lovely snippets of conversation. Occasionally I run into someone unexpectedly when I’m out doing therapy or on a mommy/daughter outing with Hannah and can give them a brief hug. And every now and then, one of my friends will come over for a visit or a brunch. I honestly value those moments more than holidays because they remind me what’s it’s like not to be the socially undead.