congenital muscular dystrophy mindfulness

Good Bye to Superstition


Yes, I wore one of these in high school. Mine was made from tiger’s eye.

I grew up in a household heavily influenced by Italian superstition; learning about the evil eye and how other’s envy could literally make you sick to your stomach.  My mom had lots of ways of keeping bad luck from the house.  On New Year’s Eve, we would bang pots and pans at midnight to keep  the evil spirits away for the year.  Then as good Catholics,  we had the tradition of putting a statue of the Virgin Mary in the window to keep the rain away for special events like the May Day parade and picnics.  And there were little things like don’t put your shoes on the table because it was bad luck.  Who would put shoes on the table anyway???


Then I married Lovely Husband who has generations of paranoid Italian superstitions to fall back on.  Sometimes he reminds me of the Nicholas Cage character in  Moonstruck.  If 2 bad things happen, he waits for another one because bad things always happen in threes.  He can’t sit in a restaurant with his back to the door because you always have to see who is coming in.  ( though I think this is more an urban Italian thing, like assuming you’re being photographed by the F.B.I. when you go to a funeral)  But I digress,  the point is I have been brought up in this culture and until recently it’s been in my head as well.


Italians are NEVER overly dramatic.


Recently, through working on mindfulness , I realized that I am giving up on superstition.  Being a parent to a sick child is a daunting process.  As soon as things are going well, some other shitty thing happens.  His seizures were pretty much controlled until he hit adolescence.  Then they worsened to 2 or 3 times a month.  He was at the emergency room for various reasons about every 2 months.  We also found out that he has a rare muscular dystrophy.  It’s no wonder I thought if I crossed my fingers,  jumped over a broom and did the cure for the overlooks; Darling Boy would stay fairly healthy.  When you have no control, it’s easy to believe in superstition.

I now realize that I have so little control that I best make the most of what’s going on NOW.  He’s doing well, you guys,  really really well.  When I told my sister-in-law, she said not to say anything because then he’ll get sick again.   See what I mean:  it’s everywhere. And that’s ok for them but for me I’m taking up celebrating the days that he’s well.  He hasn’t had a seizure in several months.  He’s growing like a weed.  He actually fits into a Small men’s t-shirt because his shoulders are that broad.  We are ordering a new wheelchair and the wheelchair dude says that his leg length is adult size.  He’ still a small guy for 15 but not as small as he used to be.  


And I know down the road this will not be.  It ‘s the nature of the disease that at some point he will have breathing issues, we just don’t know when.  There was no bad luck involved in his disease: just science.  Lovely Husband and  I both happen to have the autosomal recessive gene that causes his Congenital Muscular Dystrophy.  Although neither of us have family members who have been affected in our families’ memories, that gene defect has been passed down for generations.  He got his blue eyes because both his grandfathers have them and he is the outlier in our brown eyed family.  Unfortunately he got these very rare genes as well.


So for now,  I will be happy for another seizure free day.