Sunday, March 10, 2013

The Paradox of Overwhelming Blessings in the Wake of Tragedy



There is a strange paradox in having something terrible happen to you. The paradox is that, as a direct result of the terrible thing, many wonderful things happen. I honestly can't quite sort it out.

I know, logically, that if someone offered me a mixed bag of good things and bad things, I would happily accept, taking out the bad things and leaving them there. Why should I carry around the bad things just because they happened to get mixed in? But an illogical part of me still clings to the badness of Malachi's diagnosis, the certainty I felt in the beginning that my life would be practically unbearable forever after.

And it's not just that, either. If his disability isn't sad and difficult, would the justification for receiving the good things from our community disappear?

And, oh God, the good things. When I think back on the past year, I'm simply staggered at the number of extreme kindnesses directed at us. So much so that I think, guiltily, well, it's not that bad, as if some sort of cosmic profit-loss table has tipped too much in our favor and any day now people will decide I'm running a racket and demand their stuff back.

People have come out of the woodwork offering us support. Friends, unknown relatives, complete strangers, enemies. It has been humbling and enriching in ways I could have never imagined. Somehow Malachi's diagnosis has made giving to our family possible in ways that it just simply wouldn't be if he were typical. I see friends with typical twins struggle with some of the same stressors and worries that we have and yet no one offers to pay their medical bills or buy airplane tickets or give free childcare. Many of those things we still would have needed had Malachi not had a brain bleed, but I doubt such a "normal" life would have inspired so many to give so generously.

I hope I'm not too out of line to suggest that these selfless acts have enriched our donors' lives in addition to our own. The sense of connection and empowerment they feel in fulfilling our needs was made easier by the extremity of Malachi's needs. If he didn't experience disability, neither we nor the donors would have experienced this font of love and generosity.

But then I remember that the majority of the money we've been handed has been towards his development, and I despair that it's all been for naught. Yes, he is verbal; yes, he is remarkably bright; yes, his fine motor skills have improved enormously; yes, he adores his therapy sessions; yes, his movements appear increasingly graceful and energetic; and yes, I attribute much of this to his many Anat Baniel Method lessons. But will he ever walk or — for Christ's sake — even SIT?? That is the question that burns in my mind and makes me doubt whether I have shepherded our community's resources wisely towards an unproven method of therapy.

To be sure, the process — both in receiving such generosity and learning so much about how the brain (and therefore, humanity) works — has been uplifting and joyous and beautiful. But the outcome is still so murky and it is that which keeps me up at night, wondering if this story will end in tragedy or triumph.

And yet.

I believe that what I am slowly, slowly learning is that life is the process. If the process is good, that's all there needs to be, because there is actually no such thing as an outcome. Only never-ending processes, on and on, until the end of time. The process that began with Malachi's diagnosis was a catastrophe but kept right on proceeding into blessings, and that, that is the story that really matters.



I hope you found this post thought-provoking! Feel free to share using the icon buttons below and if you haven't subscribed to my RSS feed, liked me on Facebook or followed me on Twitter, there's no time like the present! Oh, and the AWESOME board book Dark & Light: A Love Story in Black and White is available here and all profits go towards my son's medical needs. 

7 comments:

  1. Paradox indeed. I fully believe this process of engaging is enriching for all of us, even though I too am a HUGE receiver because of Aidan's disability. There is also an honoring every gift process that I think takes place, from a beautiful card at the right time to a monetary gift to an I'm thinking of you phone call.

    Mostly I just want to say YES, you're right on again, and it's all strange and beautiful and complicated.

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  2. disability is a tough pill to swallow at times hang in there in the end it will ok ps i am going to oregon at the end of the month

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  3. what a wonderful post, my second son was born with cerebellar hypoplasia which is an under developed cerebellum, he has motor planning issues along with balance and eating and global developmental delays. We too used the ABM method and I truly truly believe it has helped him tremendously. Liam is now 5 and is in kindergarten- he does receive traditional therapies now but I hope one day we can go back to ABM- I would love to exchange notes about different therapies you've tried- I think every little bit helps in its own ways.

    Feel free to check out my blog- http://possibleologist.com

    I am very bad about updating but you have inspired me to keep going.

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    1. Cool! Nice to make your acquaintance! There is a forum on Facebook for parents who use ABM, if you are interested in joining. https://www.facebook.com/groups/172740526149963/ They often talk about complementary therapies. For our part, we have put most of our eggs in the ABM basket but are always looking for complementary theories. The money part is a huge obstacle though. :(

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  5. We just looked at your Dark & Light book during our ABM lesson this morning and now I just found this blog thru Twitter! WOW! We are just beginning our ABM journey. My daughter, Faith is 9 and has CP and an ABM practitioner has just started coming here to Bismarck, ND all the way from Milwaukee, WI. We are so blessed that we don't have to travel the country like so many other parents of special needs children to receive ABM.

    By the way in response to your post, one Bible verse that has really helped us through the years is "And we know that all things work together for good for those who love the Lord and are called according to His purpose." Romans 8:28

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    1. So cool! I love serendipity like that! I love that you can see the glass half full. :) The Romans quote is nice, though I often struggle to feel "called". ;)

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