"You really need to teach him that there are certain things that he just can't do inside." This was a comment made by someone who ought to know better but just doesn't quite "get" how unhelpful that kind of advice really is with a kid like Oliver. This is the same person who once told me that there was nothing wrong with Oliver that a little extra love wouldn't cure. And the same person who told me, at the height of my grief last year, that Oliver would suffer for any mistakes I made. And so, she implied, I had better shape up.
Well I guess I did. Shape up, that is. And I learned to stop sharing things with this person, which is a shame because she had been a pretty big part of my support network. And I learned to draw support from people who genuinely offered it and to not feel bitter that those who should have been there for me weren't. Well, ok, I'm still working on the not feeling bitter part. I mean we're talking family here. Siblings who haven't even called in the last year. Friends that I've had for twenty years who also must have misplaced my phone number. And I'm sorry but I just can't catch them up. They just can't jump in now and ask 'so how is everything with you?' Um, we're fine now but let's see, there was that period of time when I was scraping shit off the floor, the walls, the bed, the boy, etc, two or three times a day to the tune of my crying children when we most definately were not fine. Not fine at all. Oh, and did I mention the periods of utter despair but also of incredible, unsurpassable joy? We've been on a journey the past year and I'm not the same as I was. And there is just no way to summarize any of this in a meaningful way for those who kept their distance.
But the thing is, I can't throw the first stone. Disability makes people uncomfortable. I remember a time when a neighbor sat in my living room with her newborn daughter and told me that she was born disabled. I stammered out some kind of response but I really didn't know what to say. There were times after that day when I thought about her and wondered how she was coping but I never asked. I was embarrassed because I didn't know if I could find the right words and I didn't want to offend her. Besides, I thought, she looked like she was keeping it together and she must have closer friends, other people offering her comfort. She and I have become much better friends over the last year. Ironically, she is someone who has offered me a great deal of support and comfort in the wake of Oliver's diagnosis. She came and sat with Sam when I cleaned up during the worst of the poop crises. It was to her house that I went one day when I just couldn't stop crying and didn't know where else to go. She didn't say much but handed me a spoon and a tub of ice cream and we sat there on her couch -- side by side -- eating straight from the box, watching her beautiful daughter play.
If I have learned anything over the last year it is that great friendships are built on small deeds. On finding a way to extend ourselves to the people around us even if it makes us feel uncomfortable. Even if we risk something in the process. I don't believe that it is the thought that counts. Somebody got that wrong. It is the action. The phone calls. The words. And most certainly the spoon and the tub of ice cream.