To Eowyn

The razor thin edges on so many words, the shattered shards of a strong divide, coated thickly with the dust of nearly a decade replaying only echoes of it all… a formidable array of obstacles that would have dissuaded many from trying to bridge such a potentially jagged and emotionally fraught gap. Thank you for having the courage to do it. I am completely overwrought with words that hail meaning down, smashing the previous layer into a useless slush and I don’t even know how to wring intelligible prose out of such a turbulent onslaught of gratitude in this moment. To have us now in communication every day, and to find that the years have changed us both in such astonishingly similar ways, has been an unexpected gift that nothing I say here can adequately value. I honestly have never dithered so badly as to the crafting of one of these notes, and it is a testament to exactly how overpoweringly much this has meant to me. I love you, sis <3 and thank you.

Some Reading To Consider

This month’s recommended readings are a bit of a rabbit hole I went down. I first read the article, then noticed that the author had written some books, and then after reading one of them, I ended up listening to his interview on the Front Row Dad’s podcast so that I could understand a bit more about his own journey as a parent of an Autistic boy. We’ll be starting first with the article:

What Is a Life Lived Entirely for Another? By Erik Raschke

I really feel like this is an essential read for anyone who knows someone with a significantly disabled loved one. In this article, Raschke interviews Johanne Powell, who spent many decades of her life as the caregiver of her daughter, born with a rare condition that required a lifetime of total care. I wish everyone in our community could internalize her words when she says, “people would tell me, ‘God gave you a child like Siobhan because you can handle it.’ I always tell them where to stick it up their arse. I’m not designed to handle this. I don’t want it. I didn’t ask for it. I do it because there is no other choice. Caring for Siobhan was left up to me, and that is not what I am good at doing…at all.”

Nobody wants that level of disability for their child. But beyond that, a child with significant challenges often forever alters the lives of the parents, leaving them to deal with situations that are incredibly difficult and isolating. The first part of my day today was a rush of therapy that had me out the door around 740 am (ten minutes later than I should have been because our little man was melting down) to meet Nicole for one session, and by 1130 I’m in another therapy session, dealing with Tony melting down in the front office of the elementary school across the street from our house because the woman at the front desk told us he could no longer use the bathroom there. He’s been using it for about 6 years now, so he definitely didn’t understand why this change was occurring, and he kept trying to push his way to it, screaming and stomping, and after roughly ten minutes of this when I finally managed to get him to agree to leave the lobby because he’s far too big to carry out these days, he started trying to smash his head on the brick wall outside the office door. After another five minutes, I finally got him to calm down enough to walk safely home.

And that is my day not even half done. I cherish my son fiercely (as I do our daughter), but I now swim in a seemingly endless sea of moments like this or worse, and I somehow have to navigate it each day with my sanity and family intact while helping Tony progress and being present as a parent to our other child. Most of this has left me feeling like someone told me that in gaining parenthood, I needed to personally rip up every other dream I had for myself and strike a lit match and hold it to the fragments so that I could watch the remains torch. Like the mom interviewed in this article, I do what I do in all of this so that I “can feel good about” myself, because I agree with Johanne that “a clear conscience is the best coping mechanism.” I will probably have a few more specific things I want to add about this topic next week, but what I would hope is that anyone reading this post who is not already a caregiver would take the time to place themselves in Johanne’s shoes, in my shoes, in the shoes of any other parent in a similar position, and to spend some time thinking compassionately about exactly what decades spent in this manner could do to a person. You can click on the article title for a link.

To The Mountain, by Erik Raschke

I learned about this book by reading the brief bio about the author of the article mentioned above. Being curious, I bought a copy of the e-book from Google. This is a novella length story about an autistic boy who has been taken away from his father, but goes missing after the van being driven by one of his attendants crashes in a snow storm. Much of the action focuses on the efforts of the father to find his son and the son’s efforts to survive. According to the author, some of the story line for the book was inspired by a real-life story that he heard about an autistic boy who was taken away from his single father, and that the personality and traits of the autistic boy in this book are largely based on the author’s own son.

I found this to be a well written and compelling read. I actually cried at a couple of points while reading it. I don’t want to give spoilers on the ending, but I will say that it leaves many plot elements untied, and I think that is fitting. There often doesn’t seem to be a neatly tied “happily ever after” that is even possible for parents struggling to care for a loved one with significant behavioral challenges. I have found that I have to focus on thinking about one day at a time and what I need to do to progress our family for that one specific day, because if I think about what could happen to Tony when I am gone…honestly, the scenarios are too painful for me to dwell on a visualization of them. Part of what makes this book such an interesting read is how well the perspectives of both the autistic son and his father are used to weave together the story. As such, readers can see a bit about the struggles for both individuals, and for those reasons I am recommending it to each of you.