Posts tagged ‘prematurity’
When we first brought C home from the NICU, he was on oxygen. We lived at high altitude and had to drive over two even higher mountain passes on our way home from the hospital. We were outfitted with enough oxygen to get through the first few days and then multiple oxygen tanks arrived at our home along with cheerful nurses who checked on him daily.
We weren’t supposed to take C anywhere, said his doc, who advised us to avoid his getting a cold in his first year. (Um, okay.) Surprisingly, we all managed to avoid colds during that year, which is kind of a miracle in and of itself. The only place we could take C was the doctor’s office, for our thrice weekly visits. Determined to get him out in the fresh air, I would put him in the front pack and sit outside on our porch, the furthest point the oxygen tubes would reach. Eventually, they brought us travel tanks, which allowed a little more freedom in terms of walking around the house with him.
I remember my most favorite moment, which occurred about six weeks after arriving home. The visiting nurse had noticed on Friday C’s pulse-oxygen levels were within normal ranges, and we’d had to wait – over what seemed like a terribly long weekend – to confirm with the doctor on Monday that he was, indeed, ready to breathe completely on his own. We disconnected his cannula and we were on our way. We had a cordless baby. We still couldn’t really take him anywhere, but the freedom to just carry him around the house without trailing heavy scuba tanks behind us was joyous.
To this day I still check on him at night to make sure he’s breathing, although far less than I did back then. There’s just something about having a child who can’t breathe on his own that sticks with you somehow; long after the breathing tubes are gone, there’s still that fear buried in the back of your head that you can’t quite let go. Open door, approach bed, put hand on chest to feel the rise and fall, exit room, close door. Breathe.
I’m not sure we were ever in denial that something was going on with our child. (Is that denial I hear?) Recently, I’ve heard more about early warning signs for a child with autism. It’s amazing to me that no one ever said the word “autism” to us until he was almost 3 years old, because it appears so obvious in hindsight. I don’t even remember it ever coming up as a possibility; everyone seemed to be operating under the premise that he was premature and would catch up.
Even after we realized he had autism I believed, somewhere deep in my heart, that he would still be completely fine. I thought C would graduate early intervention and start kindergarten as a “typical” child. He was (and is), after all, an amazingly bright, sweet child with a real capacity for love. This doesn’t sound like autism, does it? Again, denial. And certainly some ignorance thrown in. But I’m beginning to think that the denial stage of grief should perhaps be renamed “hope.”