This is Where We Talk about Hardship & Relisience

I’m beginning to realize the shape that this blog is taking, now that’s it’s no longer the Survival Journal of My Daily Life Raising Jack.

I can see, nearly a year and a half since Jack entered full-time care, that this is a forum for continuing the conversation about Being Human. This is where I can continue to talk, in no particular order other than the actual unfolding of my life, about hardship and resilience, vulnerability and recovery. And Jesus, duh.

There are people who read this who have some connection to disabilities, but I’m seeing that mostly people return to my weird stories because they also face really difficult things in their own lives.

Being challenged by life is the common denominator, it turns out. And I am here to talk about it.

Having said that, here are a few things that have happened in my life, of late.

  1. My youngest child has struggled and continues to struggle with transitioning to First Grade. Kindergarten was a breeze for him. First Grade is turning out to be the opposite of that. His daily struggle feels like my daily struggle. The feet-dragging, the noncompliance, the whining, the stubborn refusal to cooperate, the crying, the running away, the belligerence, the yelling, the proclamations that he hates me, and the clinginess–they are all manifestations of anxiety and, in some ways, of the rigidity of thinking inherent in autism. So I am learning a) empathy for my son and the way his brain views the world, particularly when the world seems really scary and big, and b) really creative ways for assuaging fears and physically moving a resistant kid into his classroom. This hasn’t ended in week three of school. It seems to be getting incrementally better, but the real improvement is that I’ve stopped looking at the possibility that this may continue all year long and into perpetuity. I’m being mindful, yo. I’m living one day at a time and teaching Truman to do the same thing. That’s my Littlest Boy Update.
  2. I’ve begun to see everything that happens this fall as One Year Since _______. Soon it will be one year since the last time I went to the cabin with my dad. Next month it will be one month since I got the text while teaching, from my sister, saying that my dad was going on Hospice. On Halloween, it will be one year since I sat by my parents as the Hospice workers entered their sunny living room and started palliative care services. And thus it will go until the night before Christmas Eve, which is when he died. Grief is like the ocean. It’s vast and it’s deep. Sometimes it shimmers way out in the distance, blinking in the sun. Sometimes it heaves and crashes and drags you under. I asked myself the other day as I scrolled through my Facebook photos, “When will seeing images of my dad not be painful?” I can’t answer that question.
  3. In other news, I’m amazed at my mom’s strength and perseverance in the face of this great trial. She is generous and giving. She is upbeat and curious, despite living with such an enormous loss. She is a stabilizing force for her entire family, and I’m glad she belongs to us.
  4. I’m realizing that with age, I am becoming a) more patient with people and their neuroses and idiosyncrasies while also becoming b) less patient with unnecessary work, programs, expectations, and cultural traditions/concepts. This means I see you as a person and I feel for you and want you to succeed. It also means I will give you a giant lecture on the counterproductive-ness of pointless things. What can I say? Some things are worth understanding and spending time with. Meaning, people. Other things aren’t worth our time as they distract us from the people who are worth it. I would like to simplify the whole world. That’s all.

What things are happening in your life, right now? What have you recently come to understand?

  3 comments for “This is Where We Talk about Hardship & Relisience

  1. Molly
    September 6, 2018 at 1:07 pm

    My two oldest boys who both have autism are now in High school. My oldest is now a senior and requires a lot of help to get through life. It is overwhelming me to figure out how he will navigate adulthood. I’m trying not to let the stress overwhelm me, sonedays I lose. With two special needs kids in high school it is taking all my energy and focus to keep them moving forward and not flunking out. The teachers seem to expect most kids this age to be independent, but even though they are aware of the autism and the IEPs are in place, it takes moutains of emails, calls, and paperwork to keek the wheels turning. This is my daily struggle. Plus three more boys. Thank goodness for this blog to keep me going. You are the best. Please write a book!

  2. September 6, 2018 at 1:35 pm

    Love your #4! That is exactly how I feel.
    I have my first kindergartner and we have a 504 plan since he had cancer.
    Then I have a 21 month old with a genetic disorder that my in-laws are well versed in from 30 YEARS AGO. Things change, some people don’t 🙂

  3. Barb
    September 6, 2018 at 3:06 pm

    I have been thinking a lot about the same things, probably because of reading your words. Resilience, perseverance, grace for myself and others, the unending Grace of God, etc. etc. etc.

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