a.k.a. Debbie Downer, a.k.a. Angry Angela, a.k.a. Enough Already Emily.
Okay that last one is weak. You get the point.
Behind my chipper, can-do exterior sometimes lies a cynical rage case ICU Dad refers to as “Negative Nancy”. I don’t like to let her out too often — she clears a room pretty quick. But the last couple of days have been annoying and I’m grumpy, so bear with me.
Number one, James’ eye surgery last week appears to have worked only on his left eye. We’ll confirm this at our second follow up appointment on Thursday. This is incredibly frustrating for two reasons. First, James’ stroke damaged the right occipital lobe of his brain — we don’t know yet how badly this will affect him, but we know for certain it compromised the peripheral vision in his left eye. In other words, his right eye is his “good” eye. Because James’ luck always seems to bounce this way, the vision in the right eye is still not restored. Second, the only way to potentially fix the right eye is another urgent surgery on Monday or Tuesday of next week. Because the only thing more fucking demoralizing than THREE surgeries under general anesthetic in three weeks, is FOUR surgeries.
Number two, I applied for a disability determination through Social Security for James yesterday, a necessary step so that we can bring him home using home-based skilled nursing and respiratory therapy. Nothing like declaring your six month old disabled to really make you feel good about life. Anyhoo, after waiting for almost two hours at the office, I submitted all my documents and was informed someone would call me in about 5 hours. Here’s a synopsis of the pertinent part of the conversation:
SS Chick: “What is James’ disabling condition?”
Me: “Let me get the list. Okay, chronic lung disease and oxygen dependence, Kabuki Syndrome, gastrostomy tube dependence, stroke…”
[SS Chick interrupts]
SS Chick: “Ma’am?! You’re going to have to stop, the form only gives me space for one.”
SS Chick: “Ma’am, just tell me about what has happened and I’ll fill it out.”
Me: “Okie dokie, well it all started on Christmas night…”
[5 minutes later]
SS Chick: “Oh my God ma’am, I just can’t believe that. I will be praying for your baby…”
Yep, the social security representative, who processes child disability applications FOR HER JOB, basically started crying. You know you’re a sad case when…
Number three, I was working on James’ baby book this weekend, which is itself a bit of a demoralizing task. Max asked me what I was doing (he is in the toddler phase of asking about 650 questions per day at the moment), so I reminded him by showing him his baby book. As we were flipping through the pages, I saw a favorite picture of mine of Max at 6 months. And couldn’t help but think about how unbelievably different the boys’ first 6 months have been, and how unbearably far James needs to come to catch up. On the advice of a good friend, I think I will put away Max’s baby pictures for a few months.
But I suppose (grudgingly) that things aren’t really all that bad. Look how relaxed J was yesterday afternoon sleeping in the sun from his window. He did great in all of his therapy yesterday, and we’re going to try his first tastes of food by mouth this week. Small steps, small steps.