Susan's Blog

Friday, April 16, 2010

It is what it is

Just finished an hour-long radio show in (Jefferson Public Radio).  I find that when I’m talking on the air, I swing into manic mode.  My voice gets tight, as if there is not enough air for me to talk, breathe, and think at the same time.  There is a lot I want to get said, and I never know how long the host will let me talk.  So I talk fast.  I try to slow down and I’m almost gulping for air.  There is no slowing down.  I am thinking on my feet, walking from room to room with the phone pressed to my ear, waiting for the next question, wondering what it will be.  This time, I was also waiting for the bus to bring Nat home, halfway through the interview.

I was stressed but not incapacitated.  There was one question where I forgot what I was saying, because I was thinking about Nat sitting down in the dining room to eat his snack.  I could hear him humming and smacking his lips, crunching at the chips and scooping out the salsa in big red lumps.  A blizzard of crumbs swirl around him.

I was zooming around, not paying attention to much except the man’s voice in my ear and Nat in the other room.  I was trying to block out all else.  I was struggling to listen to what was being said to me.  I wanted to give the person what he wanted, and also give Nat all the care he wanted the moment he first comes home.  The endless walking in circles helped calm me and focus me.  My words came out faster than I would have liked, because of my high degree of stress and effort.   I was actually functioning almost in an autistic manner while talking about how autism parents function and try to live good lives in the context of great challenge and devastating love.

I think that this is the way I lived so much of my life when Nat lived at home:  thinking fast, trying to solve problems put to me, trying to be articulate to those talking to me, keeping more than one eye out for Nat and what he was up to, what he needed.  Stressed but not incapacitated.  But maybe not always at the best of my four cylinders.  Trying to do something for me (usually that meant just living that moment) while of course trying to do whatever Nat needed.

How do we live our lives well when we are living our lives so jammed up?  We talk, we do, we try to think, we try to love.  We breathe but sometimes even that is hard.  I think we just do it, endlessly, and that we are doing it well though it may not seem it, because that is what living is.  Otherwise, it is just kind of a nap.


Dear Susan,

I feel like I know you, even though I don’t. Your writings (books and blogs) even comments on FB…you are open and honest and REAL. I SO wanted to get to meet you when you hit a B&N bookstore near me but circumstances (and Murphy’s law) prevented me from doing so. But, I guess I just wanted to thank you. Thank you for writing and caring and zooming around and being a friend to this stranger =) I know I’ll get to meet you someday.

— added by Timmy's mom on Friday, April 16, 2010 at 5:19 pm

Thanks so much for coming to NJ and sharing your life experiences. It was so great to meet you! I am so glad to have found your blog. I find myself checking it as much as Facebook… which is impressive! I envy you for your positive attitude and strive for happiness! You are truly my hero. I hope and pray that someday (soon) I will be in a similar place! Thanks again for taking the time to talk! 🙂

— added by Jake's Mom on Friday, April 16, 2010 at 9:06 pm

This couldn’t have come at a better time. My son’s MD asked me the other day what had changed in my life since the diagnosis. I stated that most days
I am “profoundly stressed”, trying to take care of them, take them to their therapies, advocate for them, deal with insurance companies, and do everything I can do at lighning speed and just be their Mom. All while working part time and trying to be a good partner in marriage. Can you find a balance and peace when the kids are young? I don’t know? I am torn with everything I am “supposed to do” for them, everything I think is right and take care of my myself too. I feel as though having 2 young kids with autism and taking care of myself is a bit of an oxymoron at this time. So what I am now is “profoundly stressed….but not incapacitated” and I am thankful for the latter. 🙂

— added by Jenn on Sunday, April 18, 2010 at 6:49 pm

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