A Family Divided

Claire had a Maypole festival at her school during which all of the grades performed dances and songs from various countries. Whenever there are events such as this I always feel a little stressed. I want to be there for Claire, but I also have to figure out what to do with Liam and how to rearrange my day as I teach Liam in the morning and work outside the home in the afternoon. It feels like a juggling act. It would be so much easier if both of the kids were in school and I just had to clear a couple of hours from work.
I decided to swap shifts with one of Liam’s home therapists and have her teach Liam in the morning so that I could go to work in the morning. I planned to take Liam to the festival with me in the afternoon. I knew it was risky. Sometimes he likes these things and sometimes they are tough for him to tolerate. None the less, reality is I have to work, Liam is not in school, and we have limited options for full-day childcare for him. I’d take him and hope for the best. Not going was definitely not an option. Claire was dancing and singing around the house, so proud of her little dance and excited to have me watch her performance with the other first graders.
I bought her a new white dress and some shoes for the event. I could tell she felt special and I wanted to help create a positive memory of this time in her life. On the day of the event she said to me “you’re coming, right?” “I wouldn’t miss it for the world honey.”
I picked Liam up at 1 p.m. from home as planned. He had had a great day and was super happy. He had eaten well too, which is very critical for his mood. He seemed super excited to go to Claire’s school and talked about it in the car the whole way there. I tried to explain to him that we were going to a performance and what that meant. I don’t know that it registered or what he was envisioning. We arrived at the event, which had been planned for outdoors, but was moved indoors due to on and off again hail and rain. I was glad that it was not being held outside because it was cold and wet, but felt a little twinge of worry that it would be harder for Liam in an indoor location. Liam entered the event with excitement and seemed very happy to be there. I sat with him on the floor at the front of the stage area so that he could easily see the performances. Claire and her classmates were sitting just a little ways away from us. Claire and I caught eyes and she smiled and waved. Her face lit up. I blew her a kiss and pointed her out to Liam. All seemed well so far.
It took a while for all of the students to enter and Liam started to get a bit restless. Just as the even t was being introduced, Liam got up and ran out into the stage area toward Claire. I grabbed him and sat him at the edge of her classmates as it seemed like he just wanted to be with the kids. This appeased him for a while. Fortunately Claire’s grade performed first. It was super cute and Liam was clapping and smiling throughout. After their performance, everyone applauded (which was very loud) and this startled him a bit. This was the beginning of a downward spiral. He vacillated between enjoying watching the children, smiling, dancing, and clapping in applause, to saying “go home, go to the store, go to Target?” and lightly smacking me. This is his little way of saying I don’t want to be here. I decided to move him to the back of the room where there was more space and he could be further removed from the loud applause. This worked for a while but it became clearer and clearer that he was not going to last. He started to screech and holler a bit, which I know means if I don’t take action and get him out of there he will start to all out scream. His smacking turned into more or less hitting and then he kicked me. Okay, we’re out of here.
I realize it’s not the best to take him out on the heels of misbehavior. I should have done it when he was verbalizing his desire to leave, albeit in his little code of “go home, go to the store, go to Target?” The problem is that I didn’t want to leave. This was for Claire. I knew it was important to here that I was there. My heart felt broken, divided… on one hand needing to do what is right for Liam, on the other what is right for Claire. I should have found a way to not have to bring him. It doesn’t seem fair though. There are lots of siblings there. Why can’t Claire have her family there too? Why should I always have to exclude Liam? I just want to be normal. It feels like we’re the only family there that’s always divided – we’re “that” family – the one causing a scene, or that can’t show up, or has to leave early. Sometimes it all works out, but most of the time we have to divide and conquer. One parent there with Claire, the other home with Liam. On the times that we risk it and bring Liam, there is always this worry in the back of our mind, it’s hard to relax. When he handles it and has a good time, there is no greater high. It feels like one step toward a family united – toward normalcy. When it doesn’t work out – well, that’s a whole different story.
After we left the festival, I took Liam to Fred Meyer, a grocery store near Claire’s school, because they have an escalator, toys, and, of course, food. For Liam it’s the perfect place to kill some time on a rainy day before having to head back to the school to pick Claire up for the day. Liam got happier once he was out of the school. I did the right thing by him. I started to cry though, imagining my little girl sitting in her pretty white dress thinking her mom and brother were there. I wandered around Fred Meyer with Liam who was happily exploring toys and riding the escalator, tears in my eyes feeling just plain sad. I just wish we could be normal for once. That everything wasn’t so hard. Do I lie to Claire and act like we were there the whole time? Do I tell her the truth? Do I avoid saying anything and hope that it doesn’t come up? Would she know anyway if the festival ended early and the children were dismissed to their parents, only her parent wasn’t there? I guess we will cross that bridge when we come to it.
It’s in these times that the reality of Liam’s disability just hits me over the head. The room was filled with parents and toddlers and kindergarteners, all of whom seemed to have no trouble at all tolerating this event. Sure, most of the younger kids were wandering around or playing, not really paying any attention to the show, yet they were happy to do it. They weren’t bothered by the noise or confused about what was happening. Liam functions higher than a toddler. All the same, he just can’t handle a random, unpredictable event, and especially one that is intermittently loud. Will this ever change? Will there be a day that we can all participate in these events together? I can’t bear the thought of excluding him all of the time but I also can’t, and won’t, dismiss Claire and her world. I try to make the best decisions with what we have to work with. I hope they will both understand that one day. I wonder what Claire thinks about all of this or how she will internalize her family life. Will she really understand how important she is to me even though I can’t always live up to my promises? Will she come to understand how divided I feel in trying to meet both her needs and the needs of Liam? Will I get to enjoy the little events that mark both of these children’s childhoods without feeling divided?
My goal for today is to refocus my mind, to remember watching my little girl singing and dancing around a maypole, her brother at my side, clapping, and smiling, and let the rest of it go. That was a precious moment, the reason we were there, and a memory I think we will all carry with us as family united.