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!

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.

NIAW - Bust a Myth: A Higher-power Is Telling Me That I Should Not Be a Parent.

Myth: A higher-power is telling you that you should not be a parent.

Is.aac and I have been in the trying to conceive business for a long time now. We've been lucky, and have been blessed with three beautiful boys; however, even with our success, I still have moments when I struggle with the basic idea of this myth. The question of "What if all of this was God's way of telling me I shouldn't be a parent?" has haunted me off and on throughout the entire journey.


We started trying to have children in the spring of 2004. I remember the excitement I had when I finally threw out the last pack of birth control pills. I was 32 and totally ready to embark on this new journey in life.


I figured that having a baby would be just as easy for us as it was for so many others I knew. Only for us, it of course wasn't easy.

"Maybe you're not supposed to have children," said a family member after one of our losses.

"Maybe you're supposed to focus on "parenting" your students and not a child of your own," said a coworker after we'd been trying for nearly two and a half years.

People don't hold back opinions on the topic of baby making, whether you'd like them to or not. I mean, everyone is an expert, right? I think the speakers thought they were being supportive, or at least I hope that was their misguided intention. It didn't fail, though; time and again what was said seemed to radiate around the idea that I was somehow tampering with fate or God's will by moving further and further into treatments. Ultimately, I'd be so much happier if I just followed God's plan. Well, according to them I'd be happier.


At first the thought that maybe I wasn't meant to be a parent never entered my mind. It was easy to ignore what was said and focus on my quest to motherhood. (I have to admit that I vividly remember every hurtful word uttered by loved ones. Each scarred my already wounded heart. I didn't really believe them, exactly, but the damage was done anyway.)


The miscarriages brought some doubt. Am I really doing the right thing?

Then I got pregnant and it stuck.


With twins!


But there were complications, bed rest, cerclages, and prematurity.


There were brain bleeds and surgeries and wondering if my sweet little boys would live.


With all of that drama, the questions came back to haunt me: What if a higher-power was telling me that I shouldn't be a parent? What if because I didn't listen to that simple message I caused all of the problems for my amazing twin boys?


Those words shared as support? as judgement when I didn't want them, were now used for torture and fueled my guilt and self-doubt.

I shouldn't have had kids and now look what I did to them...

It is such an awful but very real thought of mine during that time.

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   The myth Busted:   Infertility isn't a message from God telling those inflicted that they are somehow not worthy to parent. It is, like any other disease, is an incorrectly functioning part of the body--plain and simple.
Those who suffer from infertility deserve to be treated with the latest technology without judgement just like those with any other disease are treated.

You would never consider telling someone with some other disease that "God wants you to suffer," or "God wants you to die." Those words would be unforgivable and so very untrue! By telling someone with infertility that his or her disease is a sign that he/she should not have kids, you are doing the very same thing. It is just cruel and hateful to cause more unwarranted suffering to an already painful situation.

As Resolve states, "Infertility is a disease of the reproductive system.  It does not discriminate and affects all races, religions, men and women equally and people all over the world...Parenthood is attainable, if that is truly your goal.  You may or may not be fortunate enough to have a biological connection to your child, but if you want the experience of being a parent, you can achieve that dream."

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It was that ridiculous myth from above that exacerbated all the turmoil in my life.

I believed them.

I lived them.

Those tiny words held such power over me for such a very long time.

Those of you who have been around a while here know how hard I've worked to deal with the guilt and doubt from the time that surrounds the boys' birth. It truly has been a long, painful process. For the most part, I have put those feelings behind me.

I finally realize that I didn't break the rules when I got pregnant and had children. I may not be overly religious, but I do believe God wasn't telling me not to parent through my infertility journey. If anything, God was showing me what I am made of...that I am stronger than I ever imagined.

It feels good to know I truly deserve parenthood just as much as anyone else.


And maybe I'll even be pretty good at it. :-)

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For more information on infertility go here on Resolve's website.

For more information on Resolve's National Infertility Awareness Week® and the Bust a Myth Movement click here.

Not Everyone Gets to Have This...

"But on the days when I come face to face with the fact that we still have issues, it is like confronting the issue over and over again. But, here is the silver lining I remind myself of -- if you can still fight, rather than accept, that means things could be so very much worse for your child. The fact that we can still fight and work to solve issues and not accept means something. It means we have hope. And not everyone gets to have that."

I read these words and cry every time. Thank you, anonymous, for saying this. For reminding me that I am lucky.

Because I AM SO VERY LUCKY!

How could I have these little guys in my life and not be? :-)