A Fine Line

Parenting is a delicate process. There are so many conflicting statements and opinions. So much information. There are doctors, other mothers, newspapers, magazines, the Internet–it seems like everywhere you turn there’s someone else talking about the best way to do something.

When you’re parenting a special needs child, there are even more voices. There’s a legion of therapists, more doctors, and a many, many well-meaning people who saw this thing on Oprah, heard about this supplement, or know a child who completely recovered after blah, blah, blah.

There’s a second, more insidious message in all this well-meaning advice, however. In a way, these messages tell us that our children aren’t good enough just the way they are. The miracle of their being is insufficient. We need to fix them, alter them, make them more acceptable to the world at large.

This is OK. I understand that the world at large might not be able to understand the joys of a disabled child. I’ve been on the other side of the looking glass and I’ve pitied my future self. I’ve felt sorry for women as they pushed children through the mall in a wheelchair. I’ve wondered how they could appear so optimistic, so upbeat.

It’s fine that the world wants to fix my child. It wants to make him as close to “normal” as is possible. In many ways, I want this myself. I want the world to see his value and worth and I know that this will be easier if he can talk and walk and eat with a knife and fork. I shoot for the big goals, the ones that often seem impossible. I dream big for my child because he deserves big–he deserves my optimism and deserves to have his light seen.

But I also have to be careful. I have to remind myself not to take it too far. Because in this moment, just the way he is, he is beautiful. He’s not a jalopy that needs tune up. He’s my child. He doesn’t have to earn my love or affection. He has it. All of these things are for the outside world–not for me. I have to be sure that in the whirlwind of therapy, lessons, and supplements that this message is heard: I love you just the way you are.
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  1. Josephine says:

    Beautifully said. So many things in life are about balance, but this probably more than anything – Finding the balance between pushing your child to work and progress, and letting them know that you completely love and adore them regardless of what they can or cannot do.

  2. Perfect and so true. Enough said.

  3. YOU, my friend, have your head on straight. There's really nothing else to say, but I had to comment because you said it so perfectly.

  4. Great post and perfectly said. I think about this so often. I never want Bennett to feel like I'm trying to "fix" him because he doesn't need "fixing". I hope that I too can manage that delicate balance. I keep reminding myself that the purpose of our therapies is to help Bennett do the things he needs and wants to do – not what everyone else thinks he should be doing.

  5. What a beautiful post!

  6. Nadine Hightower says:

    well said.

  7. blogzilly says:

    You're so much farther evolved than me. I still struggle every day with that myself, having sort of a judgment of Bennett, not appreciating what we DO have but rather thinking about all the things he DOESN'T have when it comes to Bennett's development.

    I've got a LONG way to go…

  8. Small Town Girl says:

    Very, very nice. :)

  9. There have been nights that I've cried to my husband that I didn't want to have to listen to any more advice. Elijah sees at least 4 therapists a week and that doesn't include doctors (or family, friends, strangers who feel they need to add to my list of things to do). All that well meaning advice (which- for the most part- I'm glad to have) can get overwhelming. I so get that. What it all comes down to is love, isn't it? Love and acceptance for who our children are, while at the same time pushing them to have the happiest and fullest life possible.

    It is such a fine line…and you wrote it so beautifully.

  10. Very very well said. no one can comment on what we go through unless they themselves do it!

  11. Katy, can you email me or stop by my blog? I would love it if you did a piece of art for A's new room?


  12. sitting on the mood swing at the playground says:

    This was really beautiful…

  13. that was perfect & i needed to hear that. thanks

  14. Wherever HE Leads We'll Go says:

    Very well said. Love the way that you can articulate what so many of us have been feeling and could not put into words ourselves!

  15. You are so insightful sometimes.

  16. Well said. Thank you!

  17. I love this sooo much! It's what I want to scream every time someone gives us a sympathetic look.

  18. I love that you are so grounded. You are the perfect mother for Charlie.

  19. That is simply beautiful.

  20. Kara Melissa says: