Thursday, February 20, 2014

Through the Looking Glass

Every now and again I will look at Kingsley and instead of seeing my charming, lovely little boy, I will see someone else. I'll see his diagnoses. I will see how 'society' sees him. I will see both the Kid with Spina Bifida and the Spina Bifida Kid. I'll see his future surgeries, his equipment, his therapy and procedures, his struggles and his challenges. I'll see pity and sympathy.

I won't see Kingsley at all.

It doesn't happen often, it really doesn't. I don't have time to dwell on these things, I don't have the energy. I know there is no point in wishing things were different, no point wondering what could've been done differently. I know. 

But every now and then, whether it's something I've read or something someone has said or in the way someone looks at him, I will suddenly see Kingsley as someone who doesn't know Kingsley. And it crushes me. 


  1. I've never met Kingsley but I see him. I think he is stunning. And I think his mom is pretty cool too. Should I ever make it to Canada (seems somewhat unlikely...but you never know) I want to squeeze you both, if that's okay with you.

  2. Oh goodness. Me too. It breaks my heart every time.

  3. I think every momma of a child with special needs has those moments, though like you, I am so thankful they are few and far between :)

  4. As a SB mom I definitely have those moments. And then I feel guilty for seeing him that way. But it terrifies me that I won't be able to raise him to be the strong, confident, independent person that I know he can be. I'm afraid that my fears will therefore be instilled into him. But I have to snap myself out of it and see him as the amazing little boy that he is. He is a kid, just being a kid. And I just have to hope that other people will see him for who he is too. Its so nice to be able to read your blog, its things like this that makes me feel like Im not alone. So keep your head up, momma! Kingsley is such an amazing boy.

  5. I think it is common to have these moments. Kingsley is really amazing and does not seem to let much get in his way or to hold him back! I read the following on MSN news, and it really shows that the sky can be the limit. I think it also shows the duality of who different people view the same person. (I understand if you would rather remove the link.)

  6. Oh wow! Reading this post really got to me. I saw a link to here from Babycenter website. Glad I clicked on it! I have these same thoughts about our daughter Faith. Having her has been so wonderful and so heartbreaking at the same time. She has Sb, chiari, and shunt. Some days the most innocent comment from someone can send me into a tail spin. It's hard. Thanks for keeping this blog. It's has already helped me so much as we too are facing her decompression surgery possibly at the end of May. Take care and have a good weekend! Carole H.


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