Normalizing the abnormal. That is exactly what we do and have done every single day for the past 14. years, and it is the underlying theme of this blog. I heard another mom of a disabled kid use that phrase to describe her family’s life and I never forgot it. It describes our life to a “T” (whatever that is). We are living our own definition of “normal” and I know from the stares and whispers that it might not be the “average” experience. But I learned long ago that normal and average are not synonyms. I learned today in a google search that the mom I learned this from didn’t make up that phrase. It has to do with post traumatic stress and any number of other mental/emotional problems. I didn’t mean to be flip using that phrase; in fact knowing its derivation, I find it even more descriptive.
Normal: getting ready for “back to school.” We are doing that. But, we’re not shopping at Office Max or Staples. Instead of buying pens, paper, planners, we are loading up the boxes with diapers, catheters, feeding tubes, suction catheters, nebulizer and all the other things Maggie will need. Of course the first day and every day thereafter day I have to fill the portable oxygen tank, program her dynavox (communication device), change, tube feed and catheterize her and get her dressed, into her wheelchair and ready to meet the bus. All the while we will have to have the suction machine fired up and ready to suction her trach every 30 seconds or so. But, on the bright side, I don’t have to make a sack lunch.
It is likely that unless you have a medical background, or already know Maggie, you don’t have any idea what I said in the last paragraph. Maggie is a clever, smart girl who lives in a body that just doesn’t work very well. She moves, talks, sits, breathes, and eats, which is normal; but she goes about each of those in a different way. Maggie cannot walk or talk so she uses a wheelchair and a communication device. She cannot sit without full support, so t here are seven buckles to fasten on her wheelchair. She has serious respiratory problems, so she has a tracheostomy tube. She cannot eat the normal way, so she has a feeding tube. Maggie is, despite all of this, healthy and thriving. But keeping her that way is constant work.
Maggie loves to use her communication device – or “talker” as we call it -- to tell jokes. She is the first one to tell you, by a complicated combination of buttons and switches attached to her wheelchair, that she’s not a stand up comic, but a “sit down” comic. She is very entertaining – and she laughs so hard at her riddles and jokes that she anticipates the answers and often can’t push the button to let the listener know the answer. Keep in mind she’s told and heard these jokes at least 1,000 times. Doesn’t matter, they are funny every single time – especially the way she tells them.