Wednesday, February 6, 2013

Lesson learned

 trailer from the documentary Certain Proof:A Question of Worth

I watched this trailer today and it gave me goosebumps. What I saw hits very close to home. The constant struggle to make others understand that our kids with special needs (especially the kiddos like Tessie who are on the extreme end of the spectrum) have value and worth.

That they think. They feel. They love. They understand what you are saying. They have a sense of humor. They are capable of learning if given the time and patience it can often take to teach them. That the light in their eyes, that sparkle, is a knowledge far deeper than most of us will ever know.

And the real kicker is, I used to be one of those people. The ones who think that kids with special needs are "less than". The word "retard" would regularly escape my lips with no regard to who I was really talking about. I was one of the people who thought kids like Tess were a drain on society. They couldn't be taught. Couldn't learn. Would have to be taken care of their entire lives only to give nothing back in return.

Long story short:

I was a selfish, ignorant jerk.

I am not proud of who I was and the things I thought I believed back then. In fact, I am more ashamed of that than anything else in my entire life.  And when I look at Tessie, it makes me want to cry to know that there are others in the world who think about her like I used to think about someone else's baby.

Thankfully, here's what I have been given the privilege of finding out through experience; Tess gives back far more than she could ever take. She is smart. When she doesn't want to do something (like school), she will make herself go to sleep until she is given something she wants to be doing-like watching Toy Story 2. She is a kid who loves inappropriate humor. I often joke that if Tessie ever learns how to talk, we will all be in trouble. She thinks it's funny when I yell at  cheer for my older girls when they are playing sports.  She absolutely loves music, again, the more inappropriate (Baby Got Back comes to mind) the better. And even though she has gone through more in her nine years than most of us will in a lifetime, she will still smile and giggle at the world around her.  She thinks her sisters are the best people that were ever put on the earth (can I just tell you how awesome they are with her?!). She loves unconditionally. When she smiles at you, it shines out from a pure heart and soul.

Are there hard days? You bet. Days where you think your heart can't possible break any more and then something happens and you realize, "I guess it can." Days where the ache is so deep you wonder how you are out functioning in the world. Days where you think you just can't take it more therapists, doctors, health agencies, insurance agencies, school calls, diaper changes, meds given, seizures...NO MORE.  But you keep going because there isn't a choice.

This is your child. Your baby. And there is nothing you wouldn't do for her because she is worth all of it.

All kids are.

Maya Angelou once said, "...when you knew better, you did better."

Thank God I now know better.


  1. Every time I encounter a kid like yours I ask myself why I feel so awkward, why I find it so difficult to engage, why I'd be more comfortable somewhere else. I don't know. I don't know why i have that predisposition, the same one you describe as having had yourself but if anything can help me deal with it it's the continual and humbling reminders in your postings.

  2. I don't have the answer, just remember, despite whatever challenges they may seem to have, they are still just kids. As a parent I want a quick smile from you, not a stare. just say, "hi" to us. It's as easy as that. :)

  3. I love your message! We've been going through cancer treatment with my daughter for the past 10 months, and the lesson for us has been the same. I really have a special place in my heart now for special needs children.

  4. OMG, I am WITH you on this - I relate fully to every word you write. Thank you for expressing all of this so beautifully.

    HAve you read Andrew Solomon's Book "Far From The Tree?" It is incredible... and very very long (about 800 pages) but it is broken down in the stand-alone chapters. If you are intimidated/dont have time/arent a big reader, you can at least read the couple of chapters on disabilities. (along with his first chapter which is a must to get his point of reference and philosophy).

  5. I have not read that book but I plan on downloading to my Nook asap! Thanks for the recommendation, I look forward to reading it. (I LOVE a good, long book!)