There, I Said It. When A Little More is Much Too Much.

I’ve said it many times – from my perspective as a parent, living with a limb difference, even a difference of all four limbs, is more than manageable. Once you get your new routine down, it’s even a pretty de minimis change to every day life. What a child with a limb difference needs is really just a little more: a little more time, a little more encouragement, a little more patience. Most days that little more is easy to give. But occasionally, a little more is just much too much.

A few months ago I had the flu. Once I realized I was ill, I could have sent an SOS text message but quite frankly it felt like far too arduous a task to haul myself upright from my fetal position. I was saving that for moments of absolute necessity.

My son said he was hungry. I asked him if he could  get food for himself and his sister. My then three-year-old opened the fridge and pulled out cheese sticks. Then he hauled a chair to the counter and got two bananas from the fruit bowl. I opened one eye just enough to monitor the process, sighing with relief as he did it. Me and my chills could remain huddled under our blanket for that much longer.

But then my daughter needed me. She couldn’t get her banana open, her water was on the table out of reach, and she needed to use the restroom. My son could help with some of those things but certainly not all of them.

People frequently tell me they find my daughter inspiring. But in that moment, trust me, I wasn’t inspired.

Yes, yes, I know it could have been far, far worse. But as dangerous as it can be to compare ourselves to people whom we perceive “have it better,” it can be just as dangerous to compare our situation to those of people who “have it worse.”

Sometimes I think we are allowed to wallow. We can acknowledge the hard, unrelentingness of life. We do ourselves a disservice when we only look for the silver lining and we don’t steep with awareness in the difficulty of that moment.

I don’t want my daughter to think that she has to spend life a perpetual Pollyanna. I’m sure some days she finds it exceedingly exasperating that it takes her three times as long to get the cap off the milk as  it does most people.  Some days when she hears her brother being scolded for climbing on the bathroom counter, I wonder if she too wishes she could taste that forbidden fruit. 

When we force a sunny outlook on ourselves constantly, it’s just that – a forced outcome. But when we evaluate a difficult moment, a trying, tedious day for what it is, we give ourselves the freedom to choose. And, I think, most often, we choose to embrace life.