The best of plans can often get waylaid, it seems. In fact, whenever I have some preconceived notion of what we are going to do, where we might go with Emma, things have a tendency to get derailed. As was the case this weekend. We had decided to go to various water parks in the city on Sunday as temperatures rose to around 90 degrees and so many people were out of town for the weekend, making it one of our favorite weekends to stay in the city.
Sunday is a lazy day, typically. We get up, read the paper, have a latte, talk. Nic often plays video games or finishes up his homework, Emma plays, listens to music and dances around. Eventually Emma and I go to her “study room”, which is actually the dining room table, where we work on her reading and writing for an hour or more. This Sunday we did some review and Emma did well with all three sessions I introduced. Her writing is coming along, the letters can still be somewhat erratic and over sized, but for the most part she is progressing nicely. When we had finished I said, “Okay, Em, let’s get ready for the water park!”
“One more minute. Lie in bed,” Emma said, with which she wandered off into her bedroom and shut the door.
Thinking that odd, I followed her. “Hey Em. What’s going on?” I peered into her bedroom. Emma was curled up on her side, holding her blanket and sucking her thumb. “Come on! Let’s go out. Look, it’s beautiful outside,” I pointed out the window.
“No. One more minute,” came Emma’s reply.
I went back out into the living room to find Richard.
“She has to go to the bathroom,” he said. Without going into graphic detail, it became clear that Emma had not gone to the bathroom for a few days and was now in physical pain as a result. There’s a history here that must be mentioned. Almost exactly a year ago, I wrote a post describing in detail what we use to go through with Emma on a daily basis and how things have slowly gotten better. If any are interested in reading it, click on “post” which will take you to that original post. I don’t have the energy to rewrite about it all this morning.
Suffice it to say, “poop hell” was once again upon us this past Sunday. Emma could not go, was in physical pain, and kept crying/screaming, “It hurts! Mommy! Mommy! Help! Help! It hurts!” I spent more than two hours in the bathroom with her, trying to encourage and reassure her it would be okay, to no avail. At one point I left the bathroom and said to Richard, “This is beyond belief. Is this what we’re back to now? It’s all going to begin again?”
“I just don’t see how this kind of thinking is in any way helpful,” he said.
Of course he was right. It’s not helpful. It’s where I almost instantly go, to a place of abject fear. This will be our lives, this will be what we must cope with each and every day for the rest of our lives. I vacillate between terror to despair and back to terror. None of this is helpful. I know that. Still, it is very difficult to move my thinking beyond the downward spiral. Fear is like that, it just feeds upon itself. I try to remember it’s just a feeling, it has nothing to do with anything other than the insanity in my head. I get that. None of it takes away from the fact that my daughter is sitting in the bathroom, crying in pain and I can do little other than sit with her. We’ve been through this hundreds and hundreds of times. Each and every time it feels as though we’ve entered hell. I am sure it must feel that way to Emma even more.
Finally, Richard came into the bathroom and said, “Go out with Nic. I’ll stay with her. Go take a walk.”
I looked up at him. “Really?”
As I reached for the keys to the apartment, Nic said, “Hey Mom?”
“Umm.. you might want to change before we go.”
“Yeah? Why’s that?”
“You kind of smell like poop,” he said, looking up at me apologetically. “I mean, it’s pretty bad. I think she got it on your clothes, maybe.”
“Really?” I asked looking down at my t-shirt. “Okay. Wait, I’ll be right back.” I changed my clothes and returned to the front door where Nic was waiting for me. “Is that better?” I asked.
“Yeah,” he said sniffing the air.
When we got outside, Nic said, “Boy it’s nice to just be outside, without all that screaming. Just take a nice deep breath, Mom. Isn’t it great?”
“Yeah, Nic. It is. Thank you for reminding me.”
“No problem, Mom,” he said as we walked toward the high line.
Later that evening, Emma felt well enough to go outside, so I took her to “Seal Park”, one of her favorites.
Emma “petting” the seal.
For more on Emma’s journey through a childhood of autism, go to: www.EmmasHopeBook.com