It’s 11:00 Thursday night and she calls out from her room, “I need new sheets.” I pull myself from the couch where I have sat with a beer and a blanket for the past 30 minutes trying to gain my sanity. I don’t know who is more stressed, her or me. As the weeks go by it gets much harder. You would think it would get easier as we try to adjust to this new lifestyle but it doesn’t. We can buy as many toys and puzzles from Amazon to try and sugar coat it but the pain can not be taken away.
The things that brought real pleasure are gone. She doesn’t giggle anymore. Oftentimes I would hear her giggling in her room or at the dinner table because she remembered something funny that happened at school. Her new routine is not like her old one. She doesn’t wake up excited about the day ahead of her. She doesn’t have stories to tell about her day anymore. Right now she is hanging on by a thread to move from one day to the next. This week in particular she is sad.
Feeling sad however is better than where we were before. Before this she was mad. Mad that everything she counted on was taken away. She was so angry she said she can’t live like this and wanted to die. No parent is ever prepared to hear those words come out of their child’s mouth.
So what do you do? Breathe in breathe out. Honestly my first instinct was I’m scared and need help. Fortunately we have a great support system that allowed me to put everything into perspective. My daughter is very angry. Angry that her whole life has been unexpectedly turned upside down. My daughter tells it like it is and when she says she wanted to die she really did. With that said however, would she ever harm herself no, not now. And as scary and nerve racking as all of this is I can’t help but think how far she has come to be able to express those feelings. We are the lucky ones. After years and years of all of those services she can express herself.
Taking it all into perspective though we have to understand what she is really telling us. She is struggling to get through this just as we all are. We can say that our kids are getting support and services everyday and all is wonderful. But it isn’t. Don’t misunderstand me, the services and support my child is getting are phenomenal and without them we would be in a true crisis state. Our schools, our teachers, our teams, our village are what is keeping us going. This “new” reality however is going to take a lot of time to get used to and it is going to be a long time until our children get back to where they were before. So it’s not all wonderful. Hanging on by a thread and barely making it through from one day to the next is not wonderful. It’s going to take a long time to get back to where we were before.