Recently I was telling someone about James' personality. He is fairly laid back, smiles a lot, and only cries if something is wrong. He has a whole list of things that are going wrong (I think I've spoken to or seen a doctor or nurse every other day since he's been home - and I'm not exaggerating) including diaper rash with a bit of yeast infection, leaking g tube, last stage of flu, special way to eat and sleep, eczema, cradle cap on entire head with a spot on his temple that weeps and continues to get bigger. Yet, despite all of this, when he's full and not sleepy he's very pleasant.
The person I was speaking with (was it a nurse? a parishioner? you? I don't remember.) said sweetly, "Yes. Kids like him are usually so happy and content, even with all their problems."
Kids like him.
It felt so patronizing and judgemental. I don't know if she realized it right after she said it, but I think she did. Oh! All the little retards - they're so cheery, aren't they? It's like they don't even know how miserable they should be.
Maybe you read Conversion Diary's post about an intellect's experience having a mentally disabled son. The article is very good, and worth the trip to her blog. The part that was most interesting and alarming to me was what a commenter found about Martin Luther's understanding of "special needs" kids.
Eight years ago [in the year 1532] at Dessau, I, Dr. Martin Luther, saw and touched a changeling. It was twelve years old, and from its eyes and the fact that it had all of its senses, one could have thought that it was a real child. It did nothing but eat; in fact, it ate enough for any four peasants or threshers. It ate, shit, and pissed, and whenever someone touched it, it cried. ... I said to the Princes of Anhalt: “If I were the prince or the ruler here, I would throw this child into the water–into the Molda that flows by Dessau. I would dare commit homicidium on him!” ... the changeling child died in the following year…. Such a changeling child is only a piece of flesh, a massa carnis, because it has no soul.
Source: Martin Luther, Werke, kritische Gesamtausgabe: Tischreden (Weimar: Böhlau, 1912-1921), v. 5, p. 9.
When James was still in the NICU I would look at him and think, "You are a changeling. My real son died inside of me, and you were swapped into his place." Of course that is dangerous thinking and I never allowed myself to linger too long there, but I was deeply troubled when I saw that Luther gave children like my son a similar name. This is not to say that agree with Luther about throwing anyone in the river, or believing that James has no soul! Only the use of the word "changeling" is the same.
I am starting to feel exhausted. I am tired of calling doctors' offices. I am tired of cleaning up the contents of James' stomach. I am tired of fearing that he'll throw up at any minute. Basically, I feel like I'm failing at mothering him. I don't know what I should be doing better, but my best is definitely not good enough.
Travis and I have decided it's all the fault of the g tube. Damn g tube.