Gloriousness and Wretchedness

Life is glorious, but life is also wretched. It is both. Appreciating the gloriousness inspires us, encourages us, cheers us up, gives us a bigger perspective, energizes us. We feel connected. … On the other hand, wretchedness–life’s painful aspect–softens us up considerably. Knowing pain is a very important ingredient of being there for another person. When you are feeling a lot of grief, you can look right into somebody’s eyes because you feel you haven’t got anything to lose–you’re just there. … Gloriousness and wretchedness need each other. One inspires us, the other softens us. They go together.

Pema Chödrön (Start Where You Are: A Guide to Compassionate Living)

Lately it feels as if I am reaching the limit of my emotional capacity—my container, as it were, is if not overflowing, then damn near full. It seems like I’m looking at everyone around me through a pair of polarized sunglasses, bringing their pain, regret, injustice, joy and gratitude into vivid clarity. The highs seem higher, the lows lower.

Life seemed simpler when I was just bobbing along the surface. Digging in the dirt of the real and sometimes unmeetable special needs of my children, my family and even myself has brought me into contact with a side of life that I’d rather not know about.

Without afflicting you with the horrifying details, I was beyond saddened—I was sickened–last week to read of the case of abuse and coverup at the Judge Rotenberg Center. Years ago I would have shaken my head at the inhumanity of it; now I take it personally and read it as if it is happening to my own children. It’s so raw and extreme and I know it’s not helpful, but I don’t know how else to be right now.

It triggers a nerve, begging the question that many parents of children with special needs contemplate—what will happen to my child when I die in a world of so much fear, so much ignorance, so much evil? I know, I know, heavy stuff, and not what you came here to read about. I sat with the question for a moment, breathed deeply and got on with life. What else can one do?

And though this is the new normal for me, I can’t leave this post hanging that way. As I said, the lows are lower, but the highs are higher too.

This weekend we went camping with some old friends. Their daughter is only a few days older than my son, though cognitively and physically they have seemed light years apart for a long time. She is becoming a beautiful, intelligent, strong girl and I’ve observed for the last few years how she tries to make sense of the boy who she once considered her best friend, who cannot always keep up with her fun, but who delights so much in everything she does that he literally cannot stop laughing when he’s with her.

She and I had a few minutes alone together walking in the camp ground. Surrounded by so much nature, we got to talking about the cells that all living things are made of. It seemed a teachable moment, and so I then remarked on how there are genes in each cell which give instructions on what the cell should do, and that sometimes these genes start giving the wrong instructions. In her friend’s case, I explained, the instructions about growing and learning are a little mixed up. “But sometimes there’s a good side of these mix-ups,” I said. Her eyes lit up with her a-ha moment, she nodded and without missing a beat, she said, “Because he thinks everything I do is funny!”

To watch her have that awakening, that difference is natural and sometimes beautiful—I can only wonder why I spend so much time worrying about the world when it is filled with so much love, so much awareness, so much connection.

Heartbreaking challenge and breathtaking beauty. Wretchedness and gloriousness. They go together indeed. And luckily, as the emotional containerthat is my heart is pushed to the limits of its capacity, it is seemingly growing bigger.

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About Cristin L.

Earthling, pilgrim, peace warrior and special needs parent
This entry was posted in special education, special needs, special needs parenting and tagged , , . Bookmark the permalink.

5 Responses to Gloriousness and Wretchedness

  1. Lauri says:

    Your words… “Wretchedness and gloriousness. They go together indeed.” struck such a surreal chord in me.

    I was finally appointed guardian of my 18 year old last Friday.

    It has been a six month pursuit. My husband would say it was a wretched experience. Not for the faint hearted or a pro-se friendly journey. I attempted this legal feat pro-se and despite three workshops, books, advise, guidance from professionals and friends… I couldn’t take it to an outcome. Last month, five months after I had originally filed, I obtained a lawyer. This attorney moved mountains and within thirty days of legal representation I got my guardianship.

    She had to file motions for amendments, had me get brand new assents from all my other children and husband, had me get an updated clinical TEAM report (which required my daughter getting in front of a psychologist, an MD, and LSW… again!) and added a needed Rogers Petition.

    And Snap! I am a guardian.

    For my husband this legal process was wretched.
    For me it was a royal aggravation, and beyond the scope of my capabilities

    For me the wretchedness was that thing just below the surface… the fact that she needed this legal thing at all. My dreams for my daughter’s maximum independence for the past 18 years never included guardianship. Having a court allow me too basically take control of all legal, financial and medical decisions felt like I was stripping her of her civil rights. It felt wretched.

    I know that given her intellectual, medical, educational, legal and protection needs, it was necessary. But it felt wretched.

    I will capitulate that this guardianship now allows our school district to send referral packets to new schools. They needed a legal guardian to have the authority to sign off on a new placement, which we all agreed she desperately needs. A new placement that can better meet her needs is glorious thing! Over the next few months we will be interviewing new placements, and preparing ourselves for the next chapter of skill building- pre-independence acquisitions for the future. (post 22 possibilities.)
    Truly, a glorious thing.

    Your words nailed my cumulative journey of the past six months.

    “Wretchedness and gloriousness. They go together indeed.”

    Thank you so very much!
    I Love this blog and look forward to each and every post.
    Lauri

    • It sounds like you’ve really lived it, the wretched and the glorious, these last few months. I feel at times that these posts must sound so incredibly whiny, but your experience captures exactly the way so many of my life experiences are these days: a kind of exasperation-on-the-surface and sadness-on-the-bottom all wrapped up in relief-if-I-look-at-it-a-certain-way. And re-living that through all the folks I’ve met on this journey, like you. I celebrate and sigh with you, and share a deep breath along the way. And I appreciate your company!

  2. I try to ignore the wretchedness…probably a bad coping mechanism, but it works for me. My life is glorious on all things that are important.

    • Whatever works for you is great. But for me, supressing the bad stuff had some negative effects in the long run. I think I enjoy the good stuff better when I’m able to honestly “sit with” the bad stuff without pushing it away. Though I have to agree, my life is glorious on all the things that are important too–a positive perspective is so important, because whatever you want to see is exactly what you’ll see!

  3. Pingback: The Birthday Girl Gives Everyone Else a Gift | Durga's Toolbox

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