Post 6: On the Air
On the Air
“Do you ever feel like something isn’t right?” my 6 year old Mae sighed as we lay in her bed at night. In the calm haven of the night, just the two of us staring at the shadows on her ceiling, is when she turns serious. The rest of the time she is usually wild and silly or like a cat, giving affection sparingly and on her own terms, at times unexpectedly screaming in your face. In the past Mae’s somber questions have ranged from my health to school fears. It’s as though she is calling into a radio show centered around heartache, looking for advice and a song that will match her emotions yet lift her up (De-liiii-lah). A little Whitney Houston one night, Simon and Garfunkel the next, her troubled water becoming still as glass.
When this particular question came in through the airwaves I said yes immediately but at the same time I full blast projected all the ways things were not right: it doesn’t feel right to have a mother who is becoming increasingly disabled, to have our family be so different than planned, and on and on. I was certain I was in sync with the caller. Then Mae followed up her question with “like it feels a little cold in here.” Oh…yes, right, I guess it is a little chilly. In that moment I was reminded of what therapists had told us, that to kids, whatever their situation is, is normal to them. They still can have big feelings about parts of their life situation, but they don’t usually assign it the same catastrophic, complicated weight that adults do. Mae’s questions are mainly practical. Will your stiffness ever go away? Probably not. Do you wish you could dance? Oh girl do I ever. Oh man, if you come with it will take longer because you are slow. Ugh. Occasionally, things take a more serious turn, as with this recent conversation:
Mae declared “when I’m 19 you’ll be…” I waited for her to do the math in her head. But then her calculation came up with “…dead.” Surprised, I nervously countered with “well I hope not”. She quickly whispered “but…you might not get better” and scurried off to play, leaving me all kinds of somehow. Sad, of course. But also a little relieved at her level of understanding. Grateful that she felt comfortable sharing this thought. Angry that it is a real possibility and she has to wrap her young mind around it.
Therapists have given us other helpful tidbits of advice. Give them small amounts of information at a time, at their level, as it comes up. Acknowledge all feelings as ok and normal. Use the term ALS. The kids wanting to help me is a way for them to connect. Them mimicking me is a way to process and connect. Reassure them this isn’t going to happen to them or their father. Don’t exaggerate how hard things are for me so they don’t worry too much about me. It’s a lot to remember and I’m certain we are messing up much of the time. As time goes on the questions and answers will get harder. We will keep the airwaves open for our long time listeners to keep calling in.