There’s a word that circulates the special needs community, that I come across now and again. That word is “inchstone” – as opposed to “milestone.” I think it’s appropriate, because developmentally delayed children, whether it is emotionally, physically, or mentally, have to work harder for typically smaller results. For example, because Namine has caudal regression, she had to undergo foot surgery before we could even think about her bearing weight on her legs at all, to say nothing of actually standing or walking.
But every success, as small as it may be, is worth celebrating. Because every success is hard-earned. It took Namine two years to roll over, because of her caudal regression. But I ask you, was any child happier to finally succeed? Never. When she finally did, it was not because that’s just what kids learn to do, and we could assume like any child, it was only a matter of time; no, it’s because she worked for it. She has seen the cause and effect, the hard work and the payoff, and she knows how it feels to have failed, time and again, until finally success was hers.
Personally, I think it’s because she has learned about hard work and payoff that Namine wants to walk in her walker every day. Once she gets up in the walker, she complains, grunting and whining, almost the entire time. Can you blame her? It’s incredibly hard work, and the struggle even just to merely stand is visibly evident. But still she strives, still she pours effort, tears, and as much strength as she can into her walking, every day. She asks us to use her walker. There is a determination in her, a streak of blue steel that we see, and we are awed by it.
I was awed over the weekend. At the end of the day on Saturday, I had put Namine up on her changing table in order to remove her shoes and braces. “Ooh, Ay-eh aw, eeh!” (Shoes and braces off, please!) Namine said to me. So I removed her shoes and braces. Normally, Namine will take her own socks off, but she asked me to this time, probably because her feet hurt and they were so sweaty. “Ah aw!” (Socks off!) I was happy to oblige her. I took the right sock off, then the left. I expected Namine to ask me to kiss her feet, then; she usually does. (I know some parents who would cringe at the thought of kissing their children’s stinky, sweaty feet. Well, we’re definitely not most parents. For as much misery as we’ve had to inflict on Namine’s feet, a little kissing to ease the pain is the least we can do.) But not this time – she lifted up her legs and wiggled her toes.
I know this is probably not a big deal to you. But this, right here, is an inchstone. Prior to Namine’s clubfoot repair surgery, she was hardly even able to move her feet at all. But now, after surgery, hard work with therapy and at home, and lots of determination, she can wiggle her toes. Believe me, this is a big deal, indeed.