Living with a child with special needs is a multi-layered stressor. You have the exhaustion of day-to-day struggles, meltdowns, and frustrations. Then, you have the non-stop emotional baggage that you carry everywhere, and I mean everywhere, with you. You also have to deal with the crappy responses from others, and the awkward social situations you find yourself in (like in a library baby group with the moms all gasping and staring as your 15 month old child beats up on an 8 month old). You also have guilt about everything – the what if’s, and what else’s. You try to learn to compartmentalize this guilt, but it has a nasty way of creeping back inside your head when you least expect it. You worry about things you never thought you’d worry about, like whether or not your child will ever have friends.
You also find yourself falling away from your other relationships – you forget to ask your friends about the important things in their life, and you find it hard to talk about anything other than your child with your partner. Some days you feel overwhelmed and consumed by stress, and have to drag your exhausted body out of bed against every other grain in your body.
We are trying to tackle these one at a time. Most recently, Eric and I have been putting in considerable effort to nurture our relationship. My sister advised that we re-frame what the term “date” means. She suggested we start a game of Scrabble and play two letters a night. But, realistically, we often find ourselves in bed at 8 or 9pm with a messy house, dirty dishes, unwashed laundry, and little energy. If we’re lucky we have prepared food for Maddy to bring to daycare with her the next day, but most likely we’re in bed knowing that we have to wake the next day early enough to get her food prepped.
One of our more recent successes we’ve had with focusing on our relationship was pretty easy to fit into our chaotic life. We wanted to force ourselves to not talk about the challenges we’re having as a family. It’s damn hard. Our family challenges consume both of us, and we can sit and have the same conversation a hundred times and still feel like we need to have it again. I can have a good cry and the next night need that same release as if it has been too long.
It’s so hard to not talk about our challenges that we have to force ourselves into another topic. One way we do this is by taking turns saying what we love about the other. We go on, and on, and on, until we’re saying silly things like, “I love when you buy me chips,” or “I love your face.” But you know what? It works. It forces us to focus on something other than Maddy, SPD, or PDD. We’re not brainstorming ways in which we can get her to eat, or sleep, or play… or even smile and laugh. We’re thinking about us, and why we’re happy we found each other, and why we got married. I promise it works – just try it.
We know that nurturing our relationship not only benefits us but that it also benefits Maddy, and we’d do anything for that little girl. In what ways do you and your partner re-connect during tough times?