When You Leave the Cave, You Run Into Stupidity

For the longest time, I think we lived somewhat of a hermit life. A lot of that can be attributed to the fact it was just easier to stay in our little cave when we had two, and then three boys in tow, but there were some other factors at play. The big boys' lack of proficiency and stamina with their walkers was one reason. Some lingering sensory issues was another. Jack's tendency to run away was yet another. (I even tried one of those leash things, but he broke it the first time he used it. Sigh.)

Anyway, now that many of the obstacles we faced are easing, we are out and about more and more. Leaving the house is great and freeing and stressful and tiring all rolled into one. I generally come back with a stiff neck and a headache, although I am still usually glad we went on the day's adventure.

I find that the problem is rarely the boys' behavior. They LOVE going places and talking to people. I am incredibly proud of how polite and pleasant they are to everyone they meet.

No, it's not my boys that makes me hold my breath for our entire trip. My muscles ache and my nerves are shot because of other people we encounter along the way. The people who rudely (and loudly) comment to their younger, smaller children that "No, you're waaaaaaay too big to ride in the cart!" as we pass. Clearly, the comment was in reference to my boys who were sitting in the red, double seated cart. (I love Tar.get's carts!) Or the "What's wrong with him?" comments. Or even the woman who tried to stop me outside of a restaurant to give me her business card because she thought her hyperbaric oxygen chamber would be "just the thing" to help our boys' "funny" walk. (Oh. yes. she. did. Again, this was said within earshot of my boys. AS IF we would follow the information given to us by some random stranger on the street, even. Let's just say I was not nice to her.)

Do they think we aren't doing enough? That they have the quick fix to solve all of our problems and we are too inept to find the answers on our own?

Why anyone, especially someone who doesn't even know us, feels he or she should actually open his/her mouth to suggest anything unsolicited blows my mind. Yet it is happening more and more.

I would never go out of my way to say anything that could be received negatively by someone else. I am certainly not doling out parenting advice (as if I have all the answers anyway) or commenting on things that are not my business. What would either of those things do other than cause hurt?

For the life of me, I just can't understand the mentality that seems to prevail right now. People seem to think that they can and should tell us (and others) whatever crosses their minds. I guess I can see why people would be freer to say stupid things on the internet with the anonymity, lack of proximity thing, but to do it in real life? To people you don't know?

Why does what we do matter to anyone else anyway? We aren't loud or distracting or anything else. We are just out minding our own business.

All we are is slightly different.

I can't help but feel we're being judged because of it. What we do/how we look is judged.
People don't know how to handle differences; they're afraid of them. I know that. Do our differences give people the perceived right to judge us? I don't know. But I do know people show their ignorance in their words and behavior. Often.

Do people know they cause hurt when they say critical things to strangers? Do they care?

Probably not, I guess, otherwise they'd say nothing.

Why don't they care?

It does bug me that the few can so easily sour my mood or make me think twice about doing something before heading out. I hate that their rudeness affects me and our family like this.

Sigh.

I know I should just grow a thicker skin and not let it get to me. I'm trying, really I am.

~~~

Thankfully this behavior isn't shared by everyone. There are many more people who embrace our family with conversation and smiles. People who remember us and pick up conversations right up from where they last left off. People who fight for our (and our boys') happiness. I am so grateful for these people!

Bless You

We had just finished our ice cream and had wandered around the shops to the fountain.  I had Jack and Ja.son with me.

They splashed in the fountain water and asked for coins to throw into the shallow water. I gave them each a penny. There were two plops and some giggles from them as they watched their coins float to the bottom.

"Mom, I wished I can live forever," Ja.son said, "but I need another coin for a second wish."

"What do you want to wish for this time," I asked as I handed him my last penny.

"I want to wish that I never get this full again. I am stuffed!" he laughed as he tossed his coin.

After a few minutes, we started back to the table where Sh.awn and Is.aac were sitting. Both were still finishing the last of their ice cream while we were gone.

We had only made it a few feet when I heard someone say, "Bless  you, ma'am." There really wasn't any other "ma'ams" around so I assumed they were meant for me. I looked for the source of the words.

They came from a young man in what I would guess was his early twenties. He had just following an older man out of one of the shops and was walking right behind us.

"Excuse me?" I replied, still uncertain why he said anything at all.

"Bless you," the young man said again. "I know it's hard taking care of someone with a disability." He pointed at his companion. With this second glance I could see the older man was slightly hunched at the shoulders; his facial features suggested that there was also some genetic condition at play.

We walked a few more steps while I took it all in. I gently prompted Jay to walk a bit faster while I picked up Jack.

"May I ask what's wrong with him?" the young man said, obviously oblivious that both my boys could hear and understand everything he said.

My mind raced through many responses, most of which were not very kind. My momma bear instincts were in full force. He's talking about Ja.son. How dare he suggest something was wrong? He walks with a walker, who cares? Besides, it's very possible he is involved with some sort of disability himself. He should KNOW this kind of conversation is off putting and downright rude. I was angry and I wanted nothing more than to walk away.

But I knew there were little ears listening--ears that miss nothing, that internalize everything. How I responded was important. Yet again, I was woefully unprepared for dealing with this kind of situation.

"Nothing is wrong with him," I finally said. "He was born very early and now has cerebral palsy because he was so sick at birth. He's one of my miracles, and I am very proud of him. Right, Jay?"

"Right." Ja.son replied.

I looked over at the young man. He smiled. "You are very blessed," he said as he walked away.

"I know I am," I said to myself as we walked back to our table.

Homesick

Welcome
Home
Mom & Dad

I burst into tears when I saw the sign on the door as we walked up our front steps. "Welcome Home Mom & Dad," five of the most meaningful and longed for words of my life. Oh how I had waited for this moment. Finally, I was given the chance to bring one of my babies home from the hospital. I was so excited for the chance to actually parent my own child.

I can only describe that moment, holding Sh.awn in my arms, as feeling like I was almost there. When we walked through the door with Ja.son ten days later, my world was complete. We were all home. Together.

We had worked so hard to get me pregnant. We had tried so hard to keep me pregnant. We had watched hopelessly while our boys raged their own fights for their lives. All of that time I missed home--that place where I felt safe, protected, and calm. I hadn't had those feelings for months. I was home, but I wasn't really home until the boys were there with us.

I was homesick without ever going anywhere.

This sign, which like the one on the front door was placed by my mom that day, still hangs on our garage door after all of this time. I've seen it every day for a little over 5 years. Every day it still makes me catch my breath and remember just how lucky we are to be together.

~~~

My mom told me much later that she had put the signs up several times before but had to rush over at the last minute to remove them when the boys were not discharged as expected. She's pretty amazing, if I do say so myself.

~~~

Thanks to Ellen for this week's writing prompt, and to Tracey for inspiring me to write. :)

Being Real

Tracy wrote about this topic, and it immediately stuck a chord with me (although her very touching post is not at all similar to what I wrote about). Being real has been on my mind lately.

Several people over the last several weeks have asked my advice on different areas of parenting. I was happy to offer my experiences when asked, although I couldn't help but wonder why they'd ask me for my thoughts in the first place...

I mean, me? Me out of all of those other mothers out there? I am probably the person who is the least put together when it comes to parenting. I worry about everything. I doubt myself. I beat myself up for my perceived weaknesses. I always feel like I am on the cusp of understanding/starting things that everyone else around me has known or has been doing for ages.

Worst of all, I want so badly to do "it" right, and yet I never can quite figure out what right is. How can thoughts from someone as screwed up as me be of any value to anyone else? Good grief. What if I told them something that ended up harming their kid? Ack. The pressure!

Needless to say, I had been thinking about it, been wondering about why smart, amazing mothers sought to ask me something. I wondered if I am telling the real story here and if I somehow fooled them into believing that I actually knew what I was doing. I didn't think I make it seem like I have everything together--maybe I did on the boys' blog (on purpose because family reads it) but not here. Or did I?

Then it hit me.

Maybe these smart, amazing mothers just might feel like they are barely hanging on, too.

Maybe they feel like they have no idea what they are doing.

Maybe they're also worried about doing it right and have no idea what right is.

Maybe I'm not as incompetent at this whole parenting thing as I try to convince myself I am because we are ALL trying to figure it out.

And maybe that is being real.

**I hope this post didn't make me seem like I am some whack job loser or something. I know it sounds like I am terribly down on myself, and while I will admit that I am my own worst critic, I really was just writing my thought process about this topic. I don't always walk around with an "I suck at this" banner across my chest.

Fitting In

I had a student come talk to me a few days ago. She often stays after school to work on various assignments, plus she likes to talk to me about the drama that her sister creates in her life because I had her sister as a student a few years ago. Her sister had many issues when I had her and the trend is still the same now that she's a junior in high school.

This time I asked her if there was anyone her age at school that she felt she could talk to about all of this. This question was in no way trying to deflect the discussions off of me on to another person but was instead based in my hope that she had a true friend with whom she could relate. My heart broke a little when she said no that nobody really understood her because everyone else was just too normal.

Oh man, could I relate. I'm sure we all could relate at one point in our lives or another.

Too normal. Those words have stuck in my head.

I can see where she would be disinterested in surrounding herself with people who didn't, maybe couldn't even, understand the path she is currently walking. It's painful to watch others enjoy what you so desperately want. It's even more painful to be misunderstood.

I've been there, done that. I did it when I was in the throws of infertility. I did it when I delivered two very early and very sick babies. I am doing it now as we forge our path toward our not as typical normal.

We all need that place to belong, the place where people "get" us.

Being able to feel like I fit in somewhere takes the sting out of all the "normal" around us in our real life. It makes our lives seem less strange, less crazy and, well, less scary. I'm so grateful to the internet for the chance to find others who are taking similar journeys as we are.

I urged my student to keep looking for that someone with whom she could connect. That person is out there right now, looking for her.

~~~

One of my deepest, darkest fears is about my boys and whether or not they will be accepted by their peers and whether they will fit in. As much as I hope that others will see just how fucking AMAZING they are, there will be people who will hurt my beautiful, sweet boys because they are a little different. There will be people who go out of their way to point out those differences and make fun of them. I would give anything to shield them from that kind of pain, and yet I know it will come as a part of their growing up. It will be a part of what makes them who they grow to be. I only hope I can do my part to counter any of those negatives.

Sigh. My heart is already aching, and it hasn't even started.

That Twin Thing

Yesterday, the big boys were going to spend the night at grandma's. The plan was that I come home from work, stay to play with the boys for a while, and then take Jack home with me so the big boys could stay overnight at my mom's.

Jason was super excited at the prospect and has been asking to stay for weeks now. Shawn said he wanted to stay the night, too, but he quickly changed his mind once I got there. At that point, Shawn decided that he wanted to go home with me instead of having a slumber party at grandma's. No biggie.

I have to say that it was strange with just Sh.awn and Jack. It was quiet...er in some ways, yet much louder in others. Still, two munchkins to chase around the house is exponentially easier to manage than three. Go figure.

The thing that was striking to me, however, was how Sh.awn spent his evening. The boy was on fire! He was talkative and happy and active in a way that I don't often see. I'm not kidding when I say the was non stop the entire evening. It was very un-Sh.awn like in a very nice way.

Usually Ja.son is the attention seeker. He's louder, faster, and more demanding than Sh.awn. Sh.awn often sits back and lets Jay make decisions about what they'll do, or Sh.awn will just sit and play quietly in the corner while Ja.son does whatever he wants. Sh.awn seems content in that role and will often deflect the decision making to his brother. I do my best to make sure that Sh.awn gets his chance to make choices about  play, but it is difficult to referee in their relationship all the time (and I don't think that would be a good thing even if I could).

Without the twin dynamic, Sh.awn was like a different kid. (Now, I'm not sure if he would always be this animated if he was a singleton.It really could have been a fluke due to the novelty of the experience, because I know that his personality is definitely more laid back and hesitant than what I saw last night.)

It makes me question how different life would have been for him had he been a singleton. There is no doubt that he would have received twice as much attention than he did thus far. How much more advanced would he be had he had our undivided attention during his early days? I can't know the answer to that, of course, but the way he blossomed leaves me wondering.

Then again, I do think Sh.awn (they) gained a lot from having that other person always there. They learned from each other. They motivated each other. They competed with each other. Those benefits definitely can't be discounted.

This experience has cemented my resolve to give the boys, and in particular Sh.awn,  more opportunities to develop their own unique identities. As much as they need to be together because they do have that twin bond, they also need (deserve) the chance to experience life without the influence of the other because of that twin bond.


I'd love to hear from you. How do you do it, multiples moms? How do you make sure each kid gets his or her own chance to be independent while fostering that bond? If you're not a mom of multiples, and you have some ideas, I'd love to hear from you, too.

I Have a Lot to Learn

Every week at therapy, we park in the exact same spot, right next to a disabled parking space. Ja.son, who is a sign reading maniac, tells me what on that sign once we park and again as we leave every single time we're there.

"Handicap parking, mom. We need to save that space for someone in a wheelchair," he said for what seemed like the millionth time.

To say he may be obsessed with these signs is an understatement. He looks for other handicap parking signs while we are out around town, never failing to point at least one out in every parking lot we enter. He's even started incorporating these parking spaces into his endless hours of Hot Wheels play.

"Yes, we do, Jay." I told him like I always did as I pulled into our regular spot.

Usually, that is where the conversation would end. This afternoon, though, our talk took a slightly different turn.

"Mom, when I get home I'm putting my handicap parking spaces at the end of the parking lot so my Honda Pilot can park right up front."

"Well, Jay, disabled parking spaces are usually the spots closest to the doors of the building."

"Why?"

"If someone has a hard time walking, the spaces let the person park closer to the door of the building. That way, the person doesn't have to walk as far to go inside the business."

"Well, why don't we park there then? I can't walk."

Oh. My. God. My heart dropped and shattered at my feet. The water bottle that was headed toward my mouth at that moment literally stopped midair, my mouth agape. My head began to pound as I struggled for something to say.

My first instinct was to change the subject--I so did not want to have that conversation yet. He remembers everything I've ever said...if I misstepped, how would I ever be able to make my words right? I knew that what I said in that very critical moment would become part of the foundation for how he feels about his own abilities, and the weight of that responsibility was heavy on my heart.

How could I let him know it was alright for him to need a disabled parking space when I was still not sure I was alright with the idea of him (both of them) needing it?

The seconds ticked. After what seemed like ages, he said, "Is it because I can walk with my walker?"

"Babe, mommy and daddy carry you if you or Sh.awn get tired. Plus, you two are getting stronger every day and are getting so good at using your walkers. To be honest, I didn't think we needed to park in a disabled parking space. What do you think about it?"

He thought for a bit and mulled it all over. "I don't think we need to park in one right now, but it would be neat to be able to park close to Disneyland." With that, he was done talking and ready to go in to therapy.

~~~

For him it was over, but I can't get what he said out of my head. I've replayed it over and over again trying to decide what I could have/should have done differently. I keep coming back to the same idea: I don't know whether what I said was the "right" thing or not, but I do know I am so proud of my boy. To him, things just are what they are. So he needs a walker. Who cares? So what if he needs to use a disabled parking space? It's no big deal to him. 

Why do I let it be?

If he can be comfortable with his body and his walker and using disabled parking, why do I find myself still struggling?

I have a lot to learn.
 

But if I think about it, when it comes to this amazingly insightful boy I have, I must be doing something right.

Theme for 2012 - Perspective

My theme for this year is perspective. Basically, my focus will be on taking more time to evaluate all the angles of a topic in an effort to make things more positive in my life. I have a tendency to get stuck on the negative, so this is something I'd really like to improve. A small change in the way I think about something can make a huge difference in the experience.

For my first attempt, I'm going to take a different perspective on the traditional new year resolutions. I hate the idea of looking at my life to find all that I do wrong so I can make it "right." If the purpose of these resolutions is to get us to reflect on our lives, then I'd rather highlight the things I want to continue.*

Things I want to continue this year: (in no particular order)

I've been trying hard to be kind to myself, which is something I've with which I have always struggled. I don't know why, but it was so much easier (and sadly more believable) to belittle myself with what I could have/should have done. I gotten better catching when I'd have those negative thoughts and countering them with something positive. It has been so good for me, so this is one thing I definitely want to continue.

I want to continue to spend quality time with my family. I love finding new, interesting things to do with them. Last year we had so much fun together. I hope this year can be equally fun.

I want to continue with daily writing on the boys' blog. I think right now, I've blogged daily for a year and a half--quite an accomplishment for me! At some point, I'm also going to convert the blog posts into books for them.

I want to continue writing here on this blog. I usually reserve this blog for what I consider my more raw feelings, and I treasure that I don't feel like I have to hide what I feel here. While I don't get here as often as I'd like, I do enjoy this space.

I want to continue to carve out time for myself in the day. I may not be able to do all of the "me" things I would like to do (does anyone?), but I have managed to do a little something for "me" each day.

I want to continue to push myself to do the things I don't really want to do. I am quite skilled at avoidance, which is something I don't especially like about myself. Over the last few months I've done a few things that were pretty big because I pushed myself to do them. They were hard, but they were good for me. I need more of that.

I want to continue to find ways to do something good for those outside of my circle. Hopefully, by watching me do good for others, my boys will learn to do the same.

I want to continue to give myself permission to not sweat the small stuff. It was easier to do than I thought it would be. :-)

I want to continue to do my shopping online. Oh how I love online shopping!

I want to continue to read blogs. I enjoy reading and blogging. Reading your blogs is a perfect combination!

So there it is, my first attempt at changing my perspective and looking at things in a new way. I'm going to add to my list as I think of things. I have to say that it feels so much better to focus on the positive in my life rather than all the ways I need to improve. :-)

Want to join me in changing the way we view new year resolutions? I'd love to hear what you want to continue next year.

~~~

P.S. It's national comment delurking week. I'd love to hear from you all!

~~~

*I've been working on this post in my head for a few days (since before I "officially" committed to my theme word Saturday on Prompt-ly), but I've discovered that Tesseract did something very similar on her post yesterday. :-) Great minds and all of that, right? lol. She got her idea from Monday Listicles from The Good Life.