Today didn’t go so well. Or maybe it did, depending on your perspective. My perspective right now is dark mud, so there you go. I am remembering my feelings of being under siege with Nat in my house, and I feel a wisp of that stinging me today. Not only that, there is also a profound sorrow that is pulling me down, despite telling myself to stop it already; despite knowing that we are the lucky ones.<\/p>\n
My sorrow is the oldest kind, that of a mother whose child is disabled and limited. As I write this, my sorrow deepens and I even feel a little pinprick of fear\/shame because I know that I am betraying people:\u00a0 Nat, because I just said that bad thing; those who look to me for guidance, who thank me for forging a path where there is none, who learn from me. I’m betraying all of you because I feel these terrible things. I find myself wishing he didn’t live at home still. I find myself wishing he wasn’t autistic. I find myself terrified of his future, that here we are, here it is, and that in itself is scary.<\/p>\n
As he walked into the DayHab today for his first day, I could feel his anxiety, his excitement, perhaps, his being at loose ends. He didn’t know what to do, where to sit. We were early, so they were not quite ready for him. He stood there, gangly in his down coat, like a big bumpy blue lollipop — it was already too warm for that — and carrying his school backpack that only had lunch in it. A lunch he’d made. I feel so proud of that and yet so sad, too, about every little thing…making lunch while supervised by his mom, at 22; not having the right coat on; feeling awkward and new and not knowing how to say that. Someone called his name:\u00a0 “Nathaniel,” and he shouted, “Nathaniel!” As ready as a soldier, and perhaps just as nervous.<\/p>\n
Or is that me?<\/p>\n
Walking back to my car, feeling those stupid tears, wanting to talk to someone, opting first to talk to myself.\u00a0 Is it okay? Seemed a little loose and unstructured… Better call Ned. <\/em>Ned doesn’t pick up. Call my other friend\/my guru, get his perspective. I felt better when we switched over to some State House gossip, the stuff that lights our fires.<\/p>\n Did a little food shopping and I carried an almost painful lump from my throat down to my upper belly. Caught sight of myself in the closed-circuit TVs in the aisles and saw a black and white me, bony-faced and serious.\u00a0 I wanted a Starbux, but I had ice cream in the car so I went home. Way too hot even for my little jacket. And there’s no way that Nat will leave his coat behind when he goes out to the worksite. Zipped all the way up, too. Will someone notice and suggest he leave it? Probably not. This is the real world now, people can’t expect to give too much of a shit, even good people.<\/p>\n If I sit for a moment — which I hate — and identify the source of the pain, like a stupid masochist, I find that it is, of course, the same old tired, boring wound: that I don’t know what this new situation is like for Nat and I fear that he is unhappy. Also: that I can fix nothing, that he really is disabled. And that this is forever for him.<\/p>\n Ned picks up this time, “No, it is not forever,” he says.<\/p>\n “You don’t feel sad?” I ask him.<\/p>\n “No, I think he was happy there when he visited with his teachers last week. I think he’ll adjust.”<\/p>\n Why am I always the head case, and he’s the brave and reassuring one? This is the old pattern from the earliest diagnosis days. I feel alone even though Ned is so much with me, on my side. I find myself thinking, Am I going to have to go through another 6-month period of grieving, just like when he was three, just like when he moved out at 17?<\/em> I don’t want to go through that. I don’t want to keep feeling this way. But it is back, and I have to go through it.<\/p>\n","protected":false},"excerpt":{"rendered":" Today didn’t go so well. Or maybe it did, depending on your perspective. My perspective right now is dark mud, so there you go. I am remembering my feelings of being under siege with Nat in my house, and I feel a wisp of that stinging me today. Not only that, there is also a […]<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":false,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[1],"tags":[],"class_list":["post-2227","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/pSTth-zV","jetpack_likes_enabled":true,"jetpack-related-posts":[],"_links":{"self":[{"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/posts\/2227","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/comments?post=2227"}],"version-history":[{"count":3,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/posts\/2227\/revisions"}],"predecessor-version":[{"id":2229,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/posts\/2227\/revisions\/2229"}],"wp:attachment":[{"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/media?parent=2227"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/categories?post=2227"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/tags?post=2227"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}