Tonight my ten-year-old son was out riding his bike when it was time to come in for dinner.  Walking out to our street, I looked both ways for him.  I found him just where our road bends out of sight.  There he was, with a little girl and her mom, and I watched him catching fireflies.  When he finally caught one, he ran over excitedly to hand it off to the little girl.  She waited for him to give it to her expectantly, and her face lit up as she took it from him.

It’s these rare moments that I start to think about what might have been.  Had Lizzie not been born with her difficulties, would this exchange have happened in my own yard, instead of one a few houses down?  Would it have been his own little sister he caught fireflies for, instead of a neighbor’s child?

Most days it doesn’t even occur to me that we live in a very different situation from other families.  I don’t think about how other families don’t deal with daily tube feedings, diaper changes for a six-year-old, and frequent ER visits via ambulance.  I don’t think about how my children don’t play together much, because his beloved Lego’s are too much of a choking hazard for her, and her toys are too babyish for him.  Most days I don’t think about how we are unique.  I just enjoy who we are.

Then there are other days, like when I go for IEP meetings, and see the teacher my son had for kindergarten or first grade and think of all the things he did at that age that his sister can not do.  Or when I see the Holiday Show at Michael’s school, and see the kids that would have been my daughter’s classmates had she not been dealt the hand she was.  Or when I see my son interacting with other kids, like this firefly girl.  Then my heart just aches for what might have been.  When these moments hit, they are almost always followed by a sudden feeling of guilt.  A feeling that wishing that my daughter wasn’t disabled is somehow a betrayal to who she is, even though I’m only wishing that she had an easier and by some measures better life.   This must be something most parents think of at sometime:  wishing their child was a better artist, better at school, better at sports.  Wishing those things for your typical kids though, doesn’t have that same guilty feeling as wishing that your special needs child was healthy, because somehow it feels like you are saying there is something wrong or bad about your child, which is not what you mean at all.

We do get a view of what might have been occasionally.  For instance, last Sunday, after the Abilities Expo, my husband decided we should eat pizza out.  We usually don’t dine-in at restaurants much, because Lizzie is not restaurant friendly.  She doesn’t understand etiquette (for instance, you must keep your shoes on at restaurants and not put your feet on the table), and she can’t really eat food, as she’s tube fed.  She’s quickly bored and looking for something to do (pulling on table cloths, grabbing dishes and glasses, yelling and pushing over tables), making it difficult for us or anyone else to enjoy the meal.  So, it’s not something we do often.

As we sat at the table, we got to experience the sibling arguing that we don’t often see at home.  Usually Michael goes off on his own to play or plays with his friends, and because Lizzie can’t follow, she doesn’t get the chance to bug him like a regular little sister might.  But here, he was trapped in a corner, with his little sister next to him.  This was not fun for Michael.  “Mom, she’s taking my crayons.”  “Lizzie, stop grabbing me.”  “Lizzie, stop grabbing my paper.”  I realized that we would hear much more of this, if Lizzie didn’t have her disabilities.  To his complaints, Lizzie yelled, and slapped the table, and smiled.  She was having a blast.  Michael not so much.  But I figured, he was well overdue for his sister bugging him, so I sat back and watched and thought about how it could have been.

Of course we don’t often get those firefly moments, but we do have moments of our own.  Michael walked up to his sister and gave her a kiss and a hug for no reason one day last week.  These moments melt my heart.  And I do love our moments, but that doesn’t mean that when I see the second-graders in the Holiday Show at Michael’s school this year, I won’t wonder once again how it might have been.

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