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!

A Tiny Glimpse

In the middle of all that laundry, I found my color. I almost didn't notice even.

Where you ask?

In my undies drawer of all places.

I knew I have been replacing all of my tired, old, white undies with new pretty designed ones. (Still cotton because I am not that wild.) With me being so far behind on my washing, I didn't realize just how many I had bought. I fell into a pattern of wash the three pack and then wear. Buy a few more. Repeat. Until whoa. There is color in my drawers.

There is something very telling about that, but I am not even going to go there and try to figure it out.

It made me feel so excited, though, to see the accumulation of color--almost like this was some confirmation that I am not totally lost in a sea of eternal blah. I might be grey on the outside, but on the inside, in the place that's most important, my color lives.


Now I need to learn how to nourish that color until it spreads to the rest of my world.
~~~

I have to do a shout out for my Sh.awn.

Due to lack of time and energy, I am just barely in the midst of potty training him. I admit that I was concerned that he was going to be a tough cookie to crack. He has a hard head and is difficult to sway when he sets his mind on something. (It's a good thing he looks so sweet. Good looks are nature's way to balance out his 'tude and ensure his life.* Ahem.)

Anyway, my boy has been pretty freaking amazing. He has some obstacles that makes things a bit more involved for me, but he is doing so well. He is not quite to completely trained, but he is getting very close.

I am one proud momma. :-)

*And no I wouldn't do anything to him. Good grief.

Grey

I count today as the first day of my summer, and I did what I would normally do when I have a break.

I did laundry. Thrilling stuff, I tell you. So much for my exciting life. But, I could put it off no longer as the pile of dirty clothes was embarrassingly high and I had only my "quitter" undies to wear. (And by "quitter," I mean the elastic is so worn they hardly stay up around my waist. These suckers have been driving me crazy all flipping day.)

While 70% 80% Ok 90% most of the clothes I own was washed, dried, and folded/hung in the closet, one thing became alarmingly clear. A lot of it is grey. There's black. There's white. But, most is grey.

I have very little that isn't one of those three colors. Even as I type this, I am wearing grey.

Once upon a time, in my younger years, my closet was filled with the colors of the rainbow. I wore lots of reds, blues, and greens.


I'm not even sure where those clothes went or when they disappeared. I do know it shocked me to see they're gone.

Is that what I am now? Am I some sort of grey force surrounded by vibrant beauty I'm not allowed to enjoy?

Someone who's become nothing more than neutral?

What a sad thought.

I'm happy. I know I am. But...

I don't dream like I once did.

I rein in my hopes.

I don't expect things to be sunshine and roses.

I don't have that feeling that things will only happen to someone else.

I have trouble not waiting for that other shoe to fall.

I don't think these thoughts intentionally, but they are there nonetheless. Slowly, in my effort to protect myself from the pain and turmoil that so easily finds my life, I've pushed away any chance for things that can bring in light and joy. I'm happy, sure, but my happiness is tempered with restrictions on what I allow myself to think and feel. When you look at things like that, maybe I am not as happy as I could be.


Some might question if I am really happy at all.


They say your wardrobe reflects you personality. Honestly, if I've made sure to keep my emotions even and not too far out on either extreme, it's no wonder that color is no longer a part of what I wear.


I have become grey.

~~~

This weekend I did something just for me. I read a whole book. I've haven't allowed myself the pleasure of tuning out the world and reading in what seems like a million years.

I can't tell you how jazzed it made me!

For so long I've put everyone and everything before myself. (Let's face it with everything thrown our way, to some extent I had no choice. You don't really think about doing things for yourself when keeping your head millimeters above water is your main focus.)

It was like a light was ignited.

To bring back my color, I need to remember me. It isn't very profound, but it's so important nonetheless.

Hello me. I look forward to getting to know you again.

It's been far too long.

~~~

Am I the only one to lose herself in this journey toward parenthood or in life in general?

~~~

“Don't wait until everything is just right. It will never be perfect. There will always be challenges, obstacles and less than perfect conditions. So what. Get started now. With each step you take, you will grow stronger and stronger, more and more skilled, more and more self-confident and more and more successful.”

~Mark Victor Hansen

Acceptance

"Acceptance is a person's agreement to experience a situation, to follow a process or condition (often a negative or uncomfortable situation) without attempting to change it, protest, or exit." (Wikipedia)

This.

Acceptance.

I need to learn it.

Embrace it.

It is against my nature, though.

I don't accept. I fight. I always have.

I learn about something until I can conquer it...

make it the way I want it to be.

Sigh.

But I can't conquer everything.

I suppose I shouldn't even be able to...

but damn I want to.

Most days I am better at faking it.

You know what they say, "Fake it 'till you make it." I try to, I really do.

On those days, I feel so close to accepting...

Still, something inevitably shakes me out of the game of pretend--reminds me that I am only playing make believe.

The facade may look the same; the frame is intact.

The foundation, though? It cracks a bit more each time.

Tiny, hairline cracks, probably barely noticeable to anyone else.

Only I know they're there, because with each new line, I feel weaker.

Less in control.

Less secure.

I hate it. I hate it. I hate it.

I want to BELIEVE that all will be okay - tonotquestioneveryfuckingthingsimplybecauseIdon'thavealltheanswers.

To TRUST in the process.

To learn to ACCEPT what I cannot change.

Little Heroes

Earlier this year I applied for The Littlest Heroes Project. In a nutshell, it is a non-profit organization which connects photographers to families with children suffering from life altering conditions. The organization understands that photo shoots may not always be the easiest thing to undertake when you're juggling health, therapy, and quite possibly financial issues.

The big boys had no problem meeting the qualifications for the program. Sigh. We were approved in April. I got the information needed to contact the photographer in the beginning of July.

But then I couldn't go any further with it. I just couldn't bring myself to actually send a letter to a photographer.

When I applied for the project, I was unsure if this was something we should pursue. We have some pretty amazing boys who are doing some pretty amazing things. Sure, things can be challenging and there is a lot left to work on when it comes to the boys, but it felt like to do this would be taking advantage of something that others may need more than us.

And then there was my fear of officially labeling the boys. Oh how I hate labeling. Yes, it is clear that there is something going on when you meet them. But I have not officially told many people that there is a CP diagnosis for them. (I work under the you didn't ask, so I didn't tell idea. I was open with the few who directly asked.)

I have also always struggled with how much of their information is mine to tell.

It isn't so much that I care about what people will think, either. A label is just that. It doesn't change anything.

I think my worry is that there are so many misconceptions about CP that people will underestimate their abilities and awesomeness. (I will admit that you'd have to be pretty stupid to not see their awesomeness when you meet them, but there are stupid people out there.) And frankly it's just annoying that I always end up educating everyone about everything. (Hello. I already had to explain IF and incompetent cervix and prematurity. Adding CP to the list right now seem so overwhelming. Besides, I hate that I am already being told that people ask me before going to google about medical shit. I am not their walking medical journal.)

I am very aware of the situations to which I expose the boys--if I don't trust a person's behavior/what he/she will say, he/she doesn't come near the boys. Plain and simple. And well, would this photographer and this site be too much? Would they take advantage somehow?

Sigh. So I sat on the photographer's information while I wrestled with my head. For four months actually.

This week, though, I finally wrote the letter and made contact.

The photographer wrote back the next day saying she'd love to photograph our family. She had checked out their blog and said how awesome they were. (She seems smart so far! lol) She is, of course, booked until January. (She did offer us a date Nov. 7, but the thought of doing the shoot that early freaked the shit out of me so I declined.)

We've booked a date.

 I waffle back and forth between excitement and panic when I think about the idea. That pretty much tells me that this is probably a good idea.

After all, my little heroes deserve to be celebrated, too.

I suppose it's time to start telling some of their story.

Lost My Voice

My coworker's quote was actually that she was "happy I was getting the chance to parent a normal child after dealing with special needs children." Couple that with the "I'm not sure if you're meant to be the mother to your own children or just your students" jewel said two weeks after my second miscarriage, and well, she is NOT my favorite person.

My brain says I need to just forget about her and what she said. I don't even like her, why am I still thinking about it?

My heart is wondering if those words didn't hurt me so much because they put a mirror up to my own feelings. Maybe I feel that way, too.

Do I?

Was my drive to have another baby so intense because I somehow wanted to be normal? Was I trying to replace my boys? Does that mean that I am unconsciously putting too much pressure on Jack to be "normal?"

And if I do feel that way, what exactly does that say about me? My love for them?

Then again, I wonder if it is so horrible to want the chance to experience normal. Does that desire to be just like everyone else imply that I am not satisfied with my boys? My life?

Sigh.

I've been stuck in a loop of these thoughts and worry. They play into the insecurities and doubt that always seem to be just below the surface of my consciousness, causing me to lose my voice. It's like I am afraid that whatever I say will somehow be wrong--so I say nothing at all.

It hasn't been pleasant.

Man do I miss the days when I was confident and carefree.

It doesn't help that I go back to work in two days. I have decided that I will try my best to avoid the bitchy coworker. It will be hard, though. Her class is directly across from mine.

Part 2 - Un-Setting My Heart (I Didn't Forget!)

Part 2:

I have been thinking about transforming my mind a lot lately. My kids deserve it. My husband deserves it. And most importantly, I deserve a break from all of the ugliness I placed on myself. It doesn't change what has happened one bit. All this new way of thinking is doing, really, is changing my reaction to what happened.

It takes effort, I admit. I am still tempted to go to the Dark Place when given the chance. I have to consciously force myself to stop. (As an aside, it is scary how often that negativity permeated my thoughts so much of my day. Sigh.)

---

Now that life didn't turn out how I had planned, the next step is to un-set my heart from needing it all to be the way I imagined. That's easier said than done. I guess I need to work on realizing that I can and do have now (or the opportunity for) a version of everything I have listed on the last post.

I never really thought about it like that.

I don't have to drop my expectations, just redefine them to something workable with the life we have now...

...to have baby making be as easy for us as it seems to be for so many other people. It doesn't really matter to me how we got pregnant. In fact, this isn't the right word but it is as close as I can come up with right now, I am proud that we were able to face what we did and survive. So, I suppose I should focus on the fact that I can make a baby. I have wonky tubes. That is what it is. But, with medical help, I can and do get pregnant. 5 times in fact. And it seems, with medical help, I can stay pregnant. (please don't let me jinx myself with that comment) Redefined: Baby making is easier for us than it is for some other people.

...to take home my babies straight from the hospital when they are born. I do feel like I missed out on the experience of bringing a newborn baby home. But, if I am looking for plus sides, the boys came home fully scheduled. I didn't go through the whole trying to get them to sleep through the night bit other parents of newborns deal with once they had been home for a few weeks. Who knows? Maybe I'll get a chance to do that this time. If I am honest with myself right now, I have to admit that the idea of having a newborn home within days of birth is terrifying to me now. What will I do with one of those? Redefined: The important thing is to take the babies home. It doesn't matter when.

...to have healthy children. The boys are healthy! They are smart. They are funny. Sure, they don't walk yet, but I believe they will get there. They are smart as whips; both can count to at least 15 without missing numbers and know their ABC's. They both can identify their letters and some numbers. They can both speak in full on sentences! Redefined: I have amazing boys!

...to be able to play ball with my kids outside. I think with this one, I imagine the boys playing baseball or football, while I am the typical "soccer mom." All of that is a bit hard to do when your kids don't walk, which makes it hard to be typical. I think I need to work on redefining this one. What I need to be aware of is that I have this fear that people are going to judge my boys. That fear makes me feel like I can't or shouldn't do things as a way of protecting them. (Don't let this make you think we don't do things. We do loads of things outdoors! I just worry about this anyway.) Redefined: I am able to play outside with my kids!

...to feel connected to and loved by my husband. This one is interesting. I am quite sure that the distance I feel right now is self imposed. I've blocked myself off from him. I've made lack of connecting to him something scary...the connection was something to lose. To remedy the fear, in my head it made sense to break the connection myself before he could break it for me. (Sigh. Such a warped head I have.) I understood what I was doing some time ago but couldn't find a way or the will to change what was going on back then. Now, I am ready. Redefined: I am loved by my husband and as connected to him as I allow myself to be. To add to that, the more energy I put into my relationship with him, the happier I will be.

...to be blissfully unaware of the bad things life can bring. Being aware that life is not all rainbows and sunshine isn't necessarily a bad thing. I think this knowledge has made me a more sensitive person toward others. I think it's also allowed me to truly recognize the important things in life. I don't worry about as many of the small things anymore. That has been a blessing for sure. Redefined: The awareness that bad things can occur has allowed me to really recognize what is important.

...to live normally and have a family like everyone else. What is normal? How great is everyone else's life? This one is just plain dumb. Redefined: Live true to ourselves and what makes us happy--whatever that may look like. Everyone else be damned!

This seems like a good place to end for the night. I'll be back soon with the last of my expectations redefined.

To be continued...

Finding Peace of Mind

I was doing some research online and came across this article by Su.san Je.ffers, Ph.D. (Okay, I'll admit that I was trying to earn more Swag Bucks. I won 22 bucks, so it was worth it. :-) What? You don't look up random key phrases like "ways to look for the good in life" in your free time? Ahem.)

Anyway, the point is that I found this article, and I like what it has to say.

I want to stay "awake." I want continue that feeling I had on the weekend--to embrace the todays and feel good about the tomorrows.

My plan for a while is to take each of the nine strategies Je.ffers suggests and play with it...Explore it...Conquer it...Change my way of thinking...and ultimately rewire this old brain of mine a little bit at a time.

I think I can do this.

I am making this my own little experiment.* When I am done, I hope wonder (look there! I already started using principle number 2!) if this will become a habit. How cool would that be?

Let's begin:

#1. "'Un-set' your heart." Definition: Un-setting your heart means letting go of your picture of how you want it all to be. It means letting go of trying to control things over which you have no control.

Starting with a biggie, huh Je.ffers? It's alright. I can take it.

Je.ffers states that "One of the prime causes of our suffering is our wanting things to be different than they are." I can see how that is the case in my life. Life didn't go as planned, and I clearly didn't get a life that matches the ideals I set for myself. So, it makes sense that the first step to mastering this principle is to figure out what the hell my expectations are.

Part 1: My expectations...

1. ...to have baby making be as easy for us as it seems to be for so many other people.


2. ...to take home my babies straight from the hospital when they are born.


3. ...to have healthy children.


4. ...to be able to play ball with my kids outside.


5. ...to feel connected to and loved by my husband.


6. ...to be blissfully unaware of the bad things life can bring.


7. ...to live normally and have a family like everyone else.


8. ...to be able to do it all--and do it all well.


9. ...to have both my parents enjoy their long awaited grandchildren.


10. ...to not have to fight so damn hard for what seems like everything.


11. ...to have my confidence and not be so afraid of so much around me.

There are many more, I am sure. I might just continue to add them as they come to me over the next several days. These listed are just the ones that immediately popped into my head as I was sitting here writing.

Part 2: Now that I am thinking about the ideals I had created in my head, the next step is to un-set my heart from the reality that I imagined--and can't achieve. That's easier said than done.

I guess I first need to work on realizing that I can and do have now (or the opportunity for) a version of everything I have listed above.

I never really thought about it like that. Um, that is a pretty mind blowing thought right there.

I can and do have a version of everything I have listed above...

Really?

Seriously?

Why hasn't that occurred to me before?

I don't have to drop my expectations, just redefine them to something workable with the life we have now.

Whoa.

Now I can't wait to see what tomorrow brings when I explore this topic further!

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*Anyone else wanna play along? Let me know. Shoot, all I need is a nifty badge and we'd be all set!