Since I was twenty months old I have felt left out. Everything was going along okay and then my sister was born and it really messed things up. Although I don’t remember the day, I am told that when my mom stepped out of the nursery I covered my newborn sister in talcum powder– the earliest attempt at white-out on record!

Over the course of my life I repeated that pattern. In grade school, in highschool… early college and even after I graduated- I was always drawn to friendships in threes -reliving that circumstance, creating the triad that inevitably leaves one of the three feeling not a part of things. It’s a lait motif; a constant comment for my years of therapy. I learned that I was likely recreating these scenarios to get get some resolution. In retrospect maybe it was just preparedness training.

When I got my diagnosis at 20,   that “left outtedness” was promoted  to a starring role. And while I try my best not to dwell, the reality is that there is so much that I can’t participate in. On strong days, I can say.. “but there is so much I can do”. Some days I’m not feeling so empowered. Those are the days when I can’t stop thinking about the things I’d like to do. In the summertime it feels like a regular occurrence.

The pre-baby years of my marriage were much more controlled. Avoiding heat and spending a lot of time doing what I can do wasn’t too much of an effort. (I married a man that loves the social scene of a cold dark movie theater as much as I do!) But when my daughter was born it quickly became a different ball game. Cut to today and we have a 6.9 year old pulling us outside for a wide array of activities.

My husband is happy to acquiesce to all of my daughter’s outdoor pleasures. He spends many hours playing catch, jumping rope, being tagged and “duck duck goosed”. The social ops that we are part of as parents are also new frontiers. The invitations for beach trips, the swim clubs, the Bronx Zoo excursions… the fun outdoor activities that complement every families summer calendar are ongoing. And the feeling is not only me being left out… but concern that Madeline is not getting to experience all that she should-and it takes on an energy of its own.

Yesterday we went for icecream with my husband and her friend from camp. When her friend wanted to know what flavor I’m getting, Madeline said “My mommy can’t eat ice cream because she’s trying to make her MS go away.” While I don’t expect that my new way of eating (or not eating) will make my MS go away, it was refreshing to hear the interpretation that Madeline stated so simply.

And it got me thinking more about her point of view.

Madeline doesn’t feel left out of anything. She isn’t competing for anyone’s attention nor does she seem terribly concerned when her friends are enjoying things without her. I expect when she reflects back on these summer days she will not be remembering anything but the fun she had and what we all did together.

Yet on a regular basis, I wish I could do more with her. I can’t help it. I don’t feel sorry for myself, or waste too much time thinking these thoughts… but the reality is that these feelings are here and I guess I should recognize and honor this part of my experience once and a while.

So that is what I’m doing.

Thanks for reading.

~Amy