I was reading something earlier – you can see it here – about how parents with special needs children can hold back their kids’ education/development/what-have-you. One of the majors ways this happens is when the parents focus more on the disability than on the child.

Obviously, spending so much time in the hospital at the beginning of her life set Namine back quite a bit. But thanks to both occupational and physical therapy, Namine is pretty much an average toddler – with the exception of two things. Her legs, and her speech. (Thankfully, though, being decannulated combined with her use of sign language is speeding up her speech.)

Namine was born with caudal regression. This means that while she was still growing in the womb, something went wrong with the development of her lower spine, sacrum, and tailbone. In turn, this affected her legs and feet. It made her femurs one quarter of the size of a normal child’s; it gave her severely bowed legs, above and below the knees; it gave her club feet.

I have no clue what the development rate for a normal child is, especially in terms of rolling, crawling, and walking. Frankly, I don’t care. To me, my child is normal. She still can’t roll over by herself, thanks to her near-useless left leg and hip, but she can crawl, although she prefers scooting along on her butt. I help her when she needs it, or when she asks. I encourage her to keep going, even when she thinks she can’t, and I applaud and praise her when she succeeds. I hold her, talk to her sing to her. I tell her how much I love her, and how awesome, wonderful, and beautiful she is.

What I don’t do is focus on her disability as a disability, as a problem. I won’t ever compare her to normy kids. God knows, she’ll get enough of that crap when she gets older, and she will be forced to bring it home, carried on her small shoulders. But she will never get it at home, because my daughter was not born with an abnormality. My daughter was born perfect, just the way God designed her and made her. It’s true that she was born with a heavier load to bear than most children, but we are all born with different loads to bear, and this was hers. My job as her loving parent is to help her with it.

We have watched Namine progress and excel in so many ways since she was first born. With each surgery, we thought: How can she recover from this? This is surely worse than the last. But each time Namine has recovered and she has been stronger for it. We have watched her grow from a helpless (even in breathing on her own) baby to a trachless toddler. The fact that she doesn’t “toddle” doesn’t change the very real truth that she is a smart, capable, and independent two year old.

  • I love how your write about your daughter. Surely some of her independence is due to your view of her as perfect.

    She shows potential to continue to move more independently as her body allows. Consider reading one of my past posts – “The Big Decision” linked in the box ‘Wheelchairs’ in the middle column.

  • Michele Eiche

    I love you, Paul.