Our life seems to be divided into two parts – Before Helen and After Helen. Before Helen, we often had people over to our house. I had a part-time job. Matthew and I went to the park, the library and playdates. We were very involved in our church. After Helen, all that changed. She couldn’t tolerate noise, lights, people or even much movement. We stopped having people over. I quit my job and all extra activities. We started saying no a whole lot more than we ever said yes.
1. As I’ve said before, Helen has a limit on what she can handle. It’s not about her being unhappy or throwing a tantrum. This is so much more than that. Her neurological system becomes overloaded and begins to misfire. She might lose the ability to eat, speak or sleep. She might withdraw or self-injure. Or rarely, she might be fine.
2. There are things we have to do. Just like everyone else, we have to go to the grocery store, have appointments and need to get the oil changed. Child care is a whole other dilemma, so she goes with me. By the time we finish these things, she’s done. We are rarely able to leave the house two days in a row. When we are out, she can usually handle two stops. That quickly limits what we can do.
3. Matthew comes first. He has heard no far more than he should. He’s given up play dates for therapy appointments and waited through countless meltdowns before moving forward with his plans. If there is a birthday party or playdate that is really important to him, we go and deal with the consequences later. But that means we say no to everything else.
Our friends matter…and we miss them. We appreciate the invitations (especially if they come with a sincere “it’s ok if you can’t make it”), even if we don’t come. I read the emails, even if they don’t get answered. These are lifelines to us that remind us we’re not alone. We’re slowing moving towards a life with more yes. For those of you patiently waiting, thank you.