Tuesday, October 18, 2011

Mama Bear

It seems my "Mama Bear" mentality has been coming out in full force recently. Seriously, don't mess with my son.

On any given day, I've been known to have this very conversation in my mind - "Did I just see what I thought I saw? Did I just hear that? How dare someone critique or scold Jack for a specific quirk he has?! Don't they understand how unique he is? Don't they understand how his prematurity and CP are affecting him? ... wait... should I even bring up that Jack has CP, because we're pretty sure he has it, even though we've never gotten that diagnosis? I've seen the look of pity that people get on their face when I mention it. I see the way that they treat him. How they start to underestimate him. Do I even mention that? How do I navigate the murky waters of defining Jack? Why can't people just let him be?"

And so the conversation goes.  I've found myself increasingly frustrated about this, especially as Jack is getting older. His unique track of development is ever more apparent and so are his quirks. It's been getting harder to just let Jack be himself and let no one define him. It's really hard, because that's what humans want to do. We want to attach a label on someone to make them safe.

 I do it, all the time.

There are some days where I so desperately want to put Jack in a box and make it easier on everyone to define him. To make it easier on me.  If you don't spend much time around Jack, you can have a lot of assumptions about his abilities and it gets old trying to explain his uniqueness.

I'm glad I'm not the only one struggling with this. My friend, Daria, recently wrote about labels. 

No matter how much I tell myself that Jack shouldn't be confined by a diagnosis or his prematurity, people continue to want to place a label on him, because truthfully, it makes them feel better. Anything is better than the unknown. No, we don't know what Jack's life will be like and we don't have a crystal ball.... and I know defining it makes us all feel safe because a label often stops the barrage of questions. But still, I don't want Jack treated any different than any other child. I want him to have everything AND more.

... would love to hear from other Mama Bears on this one ...

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Daria said...

Jessi! Awesome post. I definitely hear you with humans needing labels. Unfortunately, some need labels more than others. Gia just got a big one, ironically the week after I wrote that post. *sigh*

LOVED the last paragraph and it also reminded me of the most important label Jack does have and always will... your son.

Not much else matters, does it? ;)

amy said...

This momma bear says GRRRRRRRRRRR

When people ask what Jack's life will be like you simply smile and say gosh I don't know, what is your little Tommy or Tina's life going to be like! :-) It really is a STUPID question....

The question that drives me crazy is the one that comes with the "tone"....funny how someone asking how Ryan is doing can just stick in my craw :-) It all of a sudden becomes fee he sure falls alot are you sure he's ok and gosh he's so small.....blah blah blah

I agree that it is a large part of who and what our society has become....STATUS and LABLES. I always love when someone asks me when I'm going to get a new car...(I drive a 99 suburban that has toys, shoes and "stuff" in it...cause i have 4 kids) and i say when the money fairy comes down and yanks one out of her butt and gives me one - until then - no time soon!

Hang in there momma bear. You are being what a mom should be...

Our Beautiful Family said...

I can totally relate to this! especially because of Owen's little brother. When we go out people always ask if they are twins. I say no which is followed by a look. A look that says, well, what is wrong with them? They are a year apart and the exact same size at this point. Soon Isaiah will be bigger which will bring any more looks. If I go on to explain why they are the same size it gets even worse. I often just smile when people say, awwww twins! - just easier that way

I also get the "what does owen's future look like?" question. I have no idea! I didn't plan this

sorry your mama bear has to come out so much :) hang in there

marcie said...

I know I am still pretty fresh from the whole NICU experience, but my thought is that Jack has already accomplished more in his short life than most of us will do in our lifetimes. That counts for a lot doesn't it? But I can definitely understand you wanting the best for your child.

Miracle Jack....isn't that an appropriate label?

(Love your posts by the way.)

Michelle said...

I've gotten the question "Well, what kind of effect is being born that early going to have on them?" with a look like they are deformed alien creatures! I very much wanted to say to that mom, "Well, I don't know - What effect will having a rude, insensitive mother like yourself have on your children?" Feel free to use that one if you would like! Ha!

Marcie already beat me to this one, but I agree that the label that describes Jack the best is simply MIRACLE!

Jacqueline said...

I think in many cases people are not trying to be insensitive, but out of concern or curiosity ask questions that can seem at times as rude. Before having our own micro preemie I had never given much thought to preemies or the battles they fight. Our experiences shape the way we think and respond to those around us. Be strong, remain Jack's advocate and when possible extend grace.

Shannon said...

I think Jack and Marissa are about the same age, but if you put them next to each other, people would look at them so very differently. Jack may appear, for lack of a better word, "normal", to them while Marissa would definitely not. Likewise, if Marissa were put next to another child her size, but younger than her, she may appear "normal." Society seems pretty intent upon needing an explaination for everything. They need to know what, why, where, what if, and how and they need to know it right now (even if it's none of their business). No one seems content anymore to just let life take it's course. For us, labels and diagnoses get Marissa services and equipment - that's it. As far as general conversation - I tend to reserve them for people who I really just want to shut up. ;)

Sarah Pope said...

I wish I could say that I know exactly how you feel...and be able to give you some magical advice to help. But if there's one thing that I've learned through this experience, it's that no one can possibly understand what it's like to be in your shoes - and they often need quite a lot of information from you to even sympathize. Sadly, information often comes in the form of labels.
I certainly have experienced my own momma bear moments where people have suggested that Samuel is somehow less than perfect because of his early birth. And that I should not expect more from him.
The great thing about being a mom is that you can see the very best of him and share that with others. I don't think there is any doubt that the people who follow your blog have fallen in love with Jack by seeing him through your eyes.
I think we see our children a lot like how God sees us...isn't it a shame that we can see each other that way?

Pineapple Infested Island said...

Hi Jessi,

I have been reading your story for a while and I know every situation is different for sure. My son has Aspergers. I have never had him formally diagnosed because I don't want to label him, but sometimes I have to wonder. At the start of his school year I wrote a letter to his teachers and toured his school and when he was bullied I flew off the handle. You see, he is 10 and I don't want to be that mom but yet, if I don't fight his battles, who will? I hope you find some way to work through this, but you are Jack's biggest champion. Good luck <3