Actually, it’s probably never easy to be Danny. Lately he’s been more cognizant of his disabilities and gets more frustrated than he used to.
Even when you can go zooming through the hospital and show off for the nurses about how your new chair can do wheelies, the time eventually comes when you have to get your IV started… (see photo on top… calling Daddy at work to tell him how hard it was but that he was brave)
Sometimes he just feels so tied down… with his oxygen and tubing and connectors and humidifiers and his braces that require special socks and shoes and skin checks and cast appointments and his feeding tube and his tubie juice and the bags and the pumper that beeps in the night….
and the monitor that has to get stuck on and beeps when your oxygen is too low, and beeps when your heart rate is too low, and beeps when your heart rate is too high, and beeps when you move too much when you’re sleeping…
And even though in general he really likes his Mic Key button… he knows it’s the reason why he’s been getting so tall, and he likes never, ever having to swallow icky tasting medicine or his metabolic formula, lately he’s been in pain from it almost all the time. He’s been having bleeding that we aren’t sure how to stop, too.
So we’re here in the hospital to have some surgery tomorrow, and to get a good look at the inside of Danny”s esophagus and stomach, to take some biopsies, to do a balloon dilation of some scarred parts, and to generally put things back the way they should be. But when you’re only eight years old, even when you’ve been in the hospital lots of times and had lots of surgeries, it’s still not easy.
One thing that has really helped, though, has been all the emails and the visits to his website this week. Every time he started to get anxious, we’d send him to the computer, and there would be another contest entry or another new visitor to his site. It’s amazing, all the worry would be totally forgotten. My ever-so-thoughtful friend Ginny sent LOADS of friends over to www.paradeschool.com , and I think really saved my sanity.
The other thing that really helped was that Danielle’s son, Thomas, took Danny into church right before we got admitted and helped him light a candle by the statue of St. Ann, on her feast day , of course, right before the big Latin high Mass with the bishop and everything. It was really sweet and made me happy too.
And now I have to get to sleep, I’m sure there will be lots of beeps in the night, and I’m sure the nurses will be in and out often… but wish us luck in the OR tomorrow. Pray for boring. When it comes to surgery and anesthesia, boring is good.