Sometimes people just don't get it. Sometimes people look from the outside at parenting a child with special needs and think he must be a burden, it must be so hard. They see what my child isn't doing yet. They see the disability. Someone recently said to me that it must be like caring for an elderly person. Now, I've never cared for an elderly person but I've got to think it's very different from my experience parenting Nathan! When someone is losing skills, abilities and independence such that he now requires care when previously he did everything for himself (and perhaps took care of others), there is bound to be a lot of understandable anger and frustration. Perhaps there are some joys and closeness to be found in this kind of caregiving situation, but I've got to imagine that for the most part it is really hard on both the caregiver and the one who needs the care.
Raising a Nathan is different, though. He gains skills and abilities, although on his own timeline. Sometimes I am reminded of the things he's not doing yet (emphasis on the yet), but more often I focus on the skills and abilities that are emerging. When we purposely decided to become parents, we pretty much signed ourselves up for some years of caregiving, so having a little person depend upon me for his needs was not entirely unexpected. Sure, he will need more help and for a longer time frame, but I really don't think of this as caregiving for a person with a disability; I think of it as parenting my child. And while there are challenges, overall it's fun. Nathan is cute. He's silly. He makes me laugh every day. He's sweet. He's snuggly. I feel so blessed to be his mom, so lucky to have him in my life, and I don't know how to explain that feeling to somebody who looks at him and sees disability and need. That person doesn't see what I see, doesn't feel what I feel. Sometimes I wonder whether I'll really be able to love my next child as much, as strongly, as powerfully. Of course, I'm sure I will; it's hard to imagine now in this time before she's born because I don't know her yet, but I'm sure that once she arrives I will fall in love all over again. It's part of being a mom. Not a special needs mom, not a supermom, just part of what it means to be a parent, and a huge part of why anybody does this more than once (really, it's not that we enjoy smelling like spitup or changing diapers).
I'm going to close with a Dan Zanes song that hapens to be a favorite of Nathan's, and one that describes the way I feel about him. I don't know who the song was written for; I'm guessing Dan's daughter Anna, who does not to the best of my knowledge have any sort of disability. Sometimes loving your kid is just about loving your kid.
Shining Star
lyrics by Dan Zanes
you can take a nickel turn it to a dime
you can turn my face into a smile anytime
you're a shining star day and night
you're a shining star in my heart all right
you sing just like a robin you walk the way you dance
you glitter like the beaches on the south of france
you're shining star day and night
you're a shining star with a golden light
yodel-odle-lay-hee
yodel-lay-hee-hoo
you can have me laughing the way that no one can
you can bury me up to my neck in sand
you're shining star when you smile
you're a shining star you can shine for miles
yodel-odle-lay-hee
yodel-lay-hee-hoo
just in case you wonder just in case you care
anytime you need a friend i'll be there
shining star day and night
you're a shining star in my heart all right
yodel-odle-lay-hee
yodel-lay-hee-hoo
yodel-odle-lay-hee
yodel-lay-hee-hoo
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