As the parent of a special needs child, I can’t help but think of my child as special or unique. In late 2008, my daughter Lily was born with a detached esophagus that had to be surgically repaired three days after she was born. As a result, Lily never breastfed, never drank out of a bottle, and, until she was six months old, was only able to drink half an ounce of liquid by mouth each day.
So without question, Lily is special. There are times, though, when I have to force myself to take a step back and recognize that, despite all she’s been through, Lily is just a kid.
Every parent of a special needs child has specific goals they want their child to accomplish each day. For some, this may involve walking or talking, but around our house, feeding time is what makes or breaks a day.
If Lily drinks all her milk on a given day, and we do not need to use her feeding pump, it turns an otherwise ho-hum day into a glorious one. Conversely, when little Lily decides that, for whatever reason, she doesn’t want to drink her milk, I could have just won the lottery, and it would still be a rotten day.
Inevitably, your child will have days where she fails to meet her goals. On those days, you will, no doubt, rack your brain trying to come up with an explanation as to why the day before your child did so great, but now it feels like you’re back to square one.
It is during these moments that I force myself to stop with the endless search for answers in books or, even worse, online. I remind myself that tomorrow is a new day and just because Lily didn’t drink all her milk doesn’t necessarily mean something is medically wrong with her.
Maybe, Lily just didn’t feel like drinking her milk today, because after all, Lily’s just a kid. And that’s what kids do sometimes.
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