Susan's Blog

Saturday, February 26, 2011

The Life I Was Supposed To Have

The other day I had a call from the nurse at Nat’s school, asking me where were all the consent forms, the medical forms, the annual updating of Nat’s important info.  I had put that packet into his backpack, but apparently it never got to her.  This is because I did not tell anyone but Nat about that stuff, and so the information was left with him.  I guess I have my fantasies where Nat would actually remember on Monday — where he’d see the packet in his backpack and remember what I said about giving it to his teacher — and fish it out and hand it over.

This didn’t happen; what then went through his head when his hand brushed the packet as he pulled other things out of his backpack?

I will never know what went through his head, or what goes through his head.  I’ll never know what goes through anyone’s head, though.  But somehow with Nat it feels kind of painful.  Not always, just sometimes.  I suppose those wistful, grieving feelings will never quite disappear entirely.  I have to admit — me, the big champion of the Don’t Compare Doctrine — I look at Max and Ben and the entire tangible worlds they’ve created for themselves, quirky though they are, and I feel like, “God damnit, what Nat could have had, too!”  Here Max and now Ben have a few circles of friends, they make their own plans, they have their projects at home:  Ben is designing an adventure game using software called RPG Maker, about a boy wending his way through the Netherworlds, from Hell to Heaven.  It’s partly based on Dante’s Inferno (he’s actually read parts of it, at age 12), and on Celtic folklore (a favorite teacher did a unit on that last year).  He also draws dreamy, moody landscapes with vague threats on the horizon, that he posts on an art forum.  And he plays Little Big Planet II a lot, with Max or various friends.

Max is rendering the game Riven (part of the great Myst game series) into new software that — I think — will make it more 3D than it has been, and will also allow you to actually be in the game.  You can see its progress on this website.  Max also works 30 hours a week for this company, and of course has a serious relationship with Hannah, his girlfriend from high school.  He’s going to go to the Tisch School at NYU in the fall — this is his gap year.

So then there’s Nat.  People ask me, “How’s Nat?”  And I always try to think of what Nat, himself, is up to, rather than tell them about what I’m doing for him.  It is very tough.  I have to shift myself into NatMode, which is where I am released from the standards of the MainWorld, and I enter a realm of suspended judgment, where just about anything goes.  NatMode is comparable to when the boys were babies — I’m not saying Nat is like a baby, though — when the stuff you report on is milestones, rather than expressions of their personalities.  I used to crow about how “Maxie is walking at 10 months!”  Or “Nat first crawled at 7 months!”  Or “Benj is talking already! (but totally on his own terms…)

When people ask me about Nat, I think in blocks of how he spends his day.  There’s work:  Papa Gino’s, making boxes and delivering door coupons in the neighborhoods around the restaurant; serving lunch in his school cafeteria, that kind of thing.  He loves it, I say.  That is true.  When you ask him where he works, he can answer in a snap:  “PaGinos;” and “Make boxes.”  No thinking necessary; the words are right there.

I tell people he loves basketball and knows how to shoot baskets.  He loves the excitement of the crowd at the tournaments.  Gym noise does not bother him.  I tell people he is helpful at both of his homes — laundry, dishwasher, vacuuming — and so well-behaved and centered.  I like using words like “centered” rather than “well-behaved” because I like to get people thinking of him as an adult who is capable of things they may not be.  For instance, I don’t know if I’d describe myself as “centered;” active, yes, but centered?  Not that often.  I am able to focus on the boys, no problem, but most other things in my life take an effort of concentration and discipline.

But there, I guess I have given a list of Nat’s world just as I have given you a list of Max and Ben’s worlds.  Why do I feel differently about those lists?  I’m proud of all three.  I guess it’s just that sometimes, I’d like to see Nat’s list, how it would have compared to Max and Ben’s.  If I spell it out in words, the pride is no different.  The bragging, the crowing, is all there for all three of them.  But what?  What is it that’s different in Nat’s case?  Is it that he isn’t really given a choice in his world?  That everything he does was someone else’s idea.  I don’t know.   But in my quest to fully embrace disability, I see that I still have some work to do in terms of letting go completely the notion that This is Not the Life I Was Supposed To Have.


I know what you mean about bumping up against the grief … from time to time … it surfaces. But one thought jumped out for me … didn’t he choose basketball? in his own way? By you following through with what brings joy to him?

— added by Brenda (mamabegood) on Saturday, February 26, 2011 at 2:06 pm

I enjoy the authenticity and honesty of your writing. Your thoughts around grief and choice resonate with me as well.

— added by J. Lorraine Martin on Monday, March 7, 2011 at 2:35 pm