Tuesday, March 27, 2012

What I Value

Last week I spent a bit of time talking about therapy. You can read those posts here and here. Hopefully it was helpful to those just starting out on their journey with prematurity or for those who are trying to make the best therapy decisions for their preemie.

And here's where it needs to come full circle and I need to be totally honest -

My own road to this whole topic is quite rocky. 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:

- kindness
- a smile
- loyalty
- truth
- thoughtfulness
- determination
- love

Yep, I'm going with that list.
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Anonymous said...

my dear, you've made me cry. I have a Ph.D. and teach at the University, so I move around among the so-called intelligent people, but what really matters is precisely the list you put up here. It's so true, and I often remember Corinthians; If I knew all the languages, but didn't speak the language of love... So thank you for touching my heart and thanks to your precious little one who is teaching us all what life is really about.

kasey mathews said...

Jessi, I think you are a very wise woman. I heard Wayne Dyer say in an interview, "When you label me, you dismiss me." We certainly don't want that for our children. The list you have chosen to value is amazing!! Look at the incredible woman you choose to be as your baby grows into an even more incredible little boy! Please contact me if you'd like to learn more about some the the alternative therapies with used with Andie in conjunction with traditional therapies. I truly believe they are want enabled her to soar! www.prematurejourney@gmail.com

Mummypinkwellies said...

Labels are for cans, not people!

I think you're amazing Jessi and I LOVE your list xxx

Kelli J. said...

You are definitely focusing on the right things. Jack's doing fantastic!!! You and Jon have been working hard with him and helping him face those odds. Your sweet son is definitely someone to be proud of.

Julie said...

I absolutely agree with you. Jack's strengths and challenges are his regardless of what they are labeled. I love what you choose to value!