Tuesday, September 21, 2010
I asked my 3 year old daughter how her day at preschool was and her beautiful eyes started to well up with big, fat tears. "I had a BAD day!" she said.
"Sheri said that Joshie is weird and yucky!" My heart dropped. Ok, here we go. We're officially beginning the process of the girls dealing with how other people see and respond to their brother. Josh sometimes comes with me (if he misses his bus) when I drop her off at her school since his school is nearby. If he comes into the classroom as I sign Anna in, he usually wanders around walking in circles, flapping his hands and making his usual humming noises. We are immune to this and it's all good to us as long as he is not crying or screaming. Sheri is a cherubic blonde haired, blue eyed, gorgeous little child with lots of confidence and opinions. Her mom has been initiating for her to have a play date with Anna.
"Oh, sweetie. Why do you think she said that?" I asked.
Anna responded with the saddest face you've ever seen, "Sheri said that Josh makes funny noises and he flaps his hands."
Hearing this completely breaks my heart but I try to be present and help her to process her experience.
"Anna, what did you say to her?"
"I told her that was not very nice because he's my brother and he's very special to me!"
I give her a big hug and tell her that I was so sorry. I try my best to interpret that it's sometimes hard and confusing for people to understand people with special needs. As I am comforting my little girl, I realize that by being a part of our family, she's on a special journey of being an interpreter about the special needs world to the typically developing world. Not only was she born into the burden/ opportunity of being a bridge between the white and Asian worlds, and the churchy and unchurchy world, but between the disabled and typical communities as well. Anna will be a bridge person and she will have the perspective, gifts, joys, sufferings and frustrations of being a bridge person. I know this well.
I hope that this builds and strengthens her soul and makes her a strong and hopeful person. I hope that she can speak up for the rest of her life just as she spoke up today. I hope that she will let herself be comforted when she feels the hurt of other people's ignorance.
I pull out of these deep thoughts and ask her, "Does that mean that you don't want to have a play date with Sheri anymore?" Her response, "Oh, no. I still want to have a play date with her." God bless her little resilient and forgiving heart. I hope I can be more like that when I experience mean people.
Saturday, September 4, 2010
Well, it happened. The thing that I've been dreading for almost four years happened yesterday on a lovely, end of the summer evening with friends. We had been invited to a barbeque at a nearby neighborhood swim club that our friends belong to. It was Friday of Labor day weekend. Did we want to bring the kids over for a swim and a potluck dinner? Actually, yes! It is difficult for our family to socialize together with other families because of the Joshua factor. Barbequing at a pool is a perfect setting to give it a try. Swimming is one of the things that all of our kids, including Josh, love to do. The adults might even get some conversation in over a glass of wine while grilling some bacon wrapped pork chops.
It began as an unbelievably lovely time. The day had been relaxingly, but not exhaustingly, warm. All of the kids were having a great time in the pool. There were two lifeguards on duty and, because it was later in the day, we were the only people at the rather large pool. I was able to relax and not be as vigilant about watching the kids constantly. I did keep an eye on them but I was also enjoying chatting with my friend. I was amazed at how all of my kids have really grown in their swim skills over the summer. Joshua, as usual, was thrilled by the sensory stimulation of the water. He was all smiles and laughter, playing by himself in the shallow end.
Dinner was almost ready when my friend said to me, "Susan, the color of the water around Joshua . . . " Oh God. I knew at once that Josh had pooped. I was afraid that this might happen so I had been asking him all afternoon, "Josh, do you need to go potty?" He had replied with a resounding, and even slightly offended, "No!" Alas, just asking had not been enough. I pulled him out right away, wrapped a towel around him and marched him to the bathroom while my friend went to go tell the lifeguard, who got everyone else out of the pool. Cleaning him up in the shower was a feat of indescribable grossness. After a long time of cleaning up, we emerged.
It struck me that Josh felt no embarrassment. Or if he did, he had no way of showing it. He just seemed relieved, maybe refreshed even, in a fine mood and ready for dinner. What must it be like to be that free/ devoid of social shame?
Everyone was very nice and understanding. Even the kids (age 6-16) of our host family seemed empathetic and full of grace. The only unkind presence was the voice in my own head.
My husband had asked me, when he checked on me in the bathroom during the clean up phase of the evening, "How are you doing? Are you feeling ashamed?" Honestly, I didn't feel ashamed. What I felt was waves of massive anxiety, the dark scenario that we would be experiencing these same things when Josh was 30. That he'll never be potty trained. That, someday, I will miss some really important, verbally unexpressed cue from this mysterious little guy and something really bad will happen. I guess that's where my struggling heart goes. The darkest scenario of all, I realized, is that I would miss something and Josh would die, like the other little girl we knew of, who also had Septo-Optic Dysplasia, who died after getting the flu. I woke up this morning with even more anxious thoughts, which stayed with me for the rest of the day.
The thing that burst the anxiety bubble for me was later this afternoon when I tried to get a post-nap Josh to drink some water. He did but then promptly threw up all over his bed, himself, and me. It was completely ridiculous. I just had to laugh. Really? Is this really happening?
In that moment, I realized how absurd it is to try to be in control of this person's life. UNEXPECTED THINGS ARE GOING TO HAPPEN. Crazy, silly, mortifying, embarrassing, difficult, challenging, memorable, smelly, messy, grace-needing things are going to happen. It's just a given with Josh. Here is a child who is an adventure. Life with Josh is going to be really, really different and I can't control that. I can try to pretend that I am in charge of nothing bad ever happening or I can buckle up and ride the ride.