Here's where I need to come full circle and be totally honest with you.
For quite some time, I spent my days in denial, not seeing Jack's issues that were right in front of me. I was trying to will away certain labels and diagnoses. There are labels in the preemie world that I just shunned. I desperately didn't want them for Jack's life. Labels like Cerebral Palsy and Special Needs. I did not like those terms. They meant something. They had such loaded meanings. And they brought pity. I hate pity. Just please, please do not pity me! I don't need your well-meaning, but sad, pat on the back.
I couldn't even bring myself to utter the term "special needs" for long time. Maybe by letting it pass my lips, I would give it too much power? I don't know, but I am sure ashamed that I felt this way for far too long. I mistook the fact that labels do not make a person.
Let me repeat - Labels DO NOT make a person.
All parents love to brag about their children. Nothing gives me more joy than to share something awesome Jack has done with all of you. I absolutely love to see praises doted on Jack. He's quite amazing, you know? He is beating the odds!
Likewise, parents of typical kids particularly love to brag about their super intelligent children. You see it all the time on Facebook and Twitter. If I look at myself honestly, would I be one of those parents if I could? Would I be posting videos of my 2 year old reading, opening up the comments to a litany of praises for intelligence and wit? Would I post pictures of my child winning the spelling bee, with some pithy comment about how "I just don't know how my kid got to be so smart with someone like me as their mom." If I look at myself carefully, I probably would. I would want that well-meaning, happy and congratulatory pat on the back.
But for those of us with kids who struggle each and every day with things that others take for granted, those types of labels can be hard to swallow. Instead of me joining in on the praises and adoration of the super smart child, it causes jealousy and an eye-roll. In the same way I used to shun labels, I am now jealous of a label.
Can't I just let the labels go? Labels do not give value, nor do they define you.
When all is said and done, here's what I want to value:
- a smile
Yep, I'm going with that list.
This post was originally published on March 27, 2012 and is being reposted today as part of our Flashback Friday series.