Maybe

Their due date was this week. It quietly eased passed without anyone really even noticing.

Maybe this year I spent less time thinking about the what ifs.

Maybe I didn't have that familiar sour stomach that usually comes around this time of year.

Maybe it was just a regular day.

The same as every other day.

Only not.

I made cupcakes that day.

Told the boys I made them for no particular reason. They insisted there was a reason...cupcakes need a reason to be had, I guess, especially when made during the work week. In the end, I told them they were just so we celebrate us as a family.

I didn't have another reason. I don't really know why I made them.

Maybe I wanted some chocolate, my go to comfort food.

Maybe I just needed to.

Maybe there was a part of me that wished we were celebrating a birthday that day.

That we had no idea what words like prematurity and cerebral palsy would mean to our family.

 Maybe I just needed to pretend for a second that things had gone just as we planned.

Maybe I'm not as okay about this day as I'd like to say I am.

Uncertain

I brought in the New Year vomiting my guts out, while my poor Jack, periodically took his turn vomiting with me. We were quite the miserable pair.

What a way to punctuate the end of a decently crappy year. Sigh. So long 2013. You sucked.

~~~

Someone I know told me that what you are doing the first day of the new year is what you'll be doing for the rest of the year. I certainly hope that's wrong.

But as much as I am trying to ignore that comment, there's a tiny part of me that wonders if it really will just be more of the same. What if this cloud of doom I feel like we're traveling under won't go away in the foreseeable future?

Then what?

I mean, there really is only one thing to do. You tilt your head down and just keep doing what you can. I'm good at that. I've been doing it for a long, long time.

It's tiring, though, this keep on doing business. It wears you down and sucks out some of the joy--not all of it, mind you, but enough to make you aware that something is missing.

~~~

Things around here are still up in the air. To be honest, uncertainty is not a state in which I do well. I like answers. I like the details. I like plans. Not having those three things causes a huge amount of stress for me.

The realization that all of the elements are out of my hands right now, is hugely stressful, but I'm trying to release my stress over that which I cannot control. It's Is.aac's ball game right now, and as much as I want everything solved, it has to come from him. It's a hard place to be.

So, I'm left with tucking in my chin and doing. Like usual.

Trying to Get Over It

Each day I let myself stay in the quiet, it gets harder to speak. I get comfortable with the uncomfortable feeling of holding things in. Eventually, it feels like I really have nothing to say anyway.

I forget that the bottleneck of emotion is eased when I allow myself the outlet. Sigh.

It's been over two weeks since I've written anything here. I've tried, too. It's time to make myself get over it.

~~~

I have a lot on my plate right now, and I'm not sure I am handling things as well as I could--as maybe I should.

~~~

I got a compliment about my parenting the other day. Sadly, all I could think about was how the person didn't really know all that I'm not doing. Sure, it looks like I've got a handle on that particular area, but what about all of the other areas? I am the master at beating myself up for my own lack of perfection, even though I know full well that perfection isn't possible.

~~~

We got our pictures back today.

I think they came out pretty nice. It's damn hard to get three boys to look at the camera and smile all at the same time, especially when Jack wasn't interested in the whole picture scene at all. I'm relieved we got some good ones after all. :)

~~~

We are now the owners of two disabled parking placards. My mom uses one to pick up the boys from school every day. I couldn't bring myself to use the other one until this last weekend.

Um, yeah.

I'm still not sure how I feel about all of that.

Noise

I'm here.

There are things I could discuss, I guess, but I swear my life now revolves around the boys' school and my work.

I just don't want to talk about all of that.

Things are a bit better in some ways. They're not in a lot of ways. It's all become a slow, tedious process that may just drive me insane.

That translates to a constant, never-ending nagging of frustrations and worries that I am struggling to escape. At the same time, I can't bring myself to put the thoughts into actual words, even when I know that would likely calm the roar of my brain.

There's just too much noise. Sigh.

The Blahs

You know how when you get overwhelmed with life and you just can't seem to come up with the words to purge your brain of all the insanity? I'm in one of those phases right now. There's so much to talk about, but I'm just struggling to actually write it all out. Clearly I'm having the blahs.

School for Sh.awn is better in some ways, not better in others. It is obvious that the school is completely unprepared to deal with kids in walkers/with different needs in the regular classroom. That makes me very nervous.

We have an SST meeting with everyone on Tuesday. I have this feeling I'm going to have to take out my claws and start fighting. Again.

I'm so tired of fighting all the time.

~~~

Here's a sweet story the teacher told Is.aac on Friday. Ja.son asked if he could collect the papers from his table group in class. As he handed them all to his teacher, he very proudly said, "This is the best day ever!" and gave her a kiss on the arm. His teacher said it was one of the sweetest things that had happened to her in a long time.

Meanwhile, Mr. Sh.awn thinks school is for talking to people. He can't understand why the teacher won't answer all his (unending) questions. He thinks that his hand up in the air means he should have an immediate response from his teacher, and boy does it make him mad when he doesn't get that!

Sucked Dry

Tomorrow is a rare day off from appointments and/or activity. I am looking forward to it with every inch of my being. It will be a stay in my pajamas all day and eat chocolate at every chance kind of day. (And no, I'm not sharing any.) Brushing my hair is iffy at this point until maybe late afternoon, which I confess would only be so I don't look like deranged housewife over the edge when Is.aac comes home from work.

I am truly spent. Physically. Emotionally.

I'm totally and completely drained, sucked dry of my energy. It has been an emotionally rough couple of weeks.

Sigh.

Control

I have six five more work days until vacation. Counting down the days is all that's getting me out of bed in the morning. I am still sick. I am stressed. I am cranky. I am overwhelmed with all that has to be done and oh my god I don't have enough hours in the day to do everything that must be done right this very minute.

The past few weeks have not been good.

It feels eerily like I am caught in some sort of mental rip current. As much as I struggle to get back to the shore, I look up to find myself even further away from my destination than I was just moments before. I know I'm supposed to swim with the flow until I am able to break free from its clutches, but man if doing so doesn't go against every fiber of my being. My usual instinct is to fight. It's what I do.

The thing is, I am tired of always fighting.

Unfortunately, I have wound myself so tight that I can't seem to do anything productive. With so much to do, I find myself doing is a whole lot of nothing at all.

In essence I've mentally given up even attempting to float out of the channel, preferring to just let myself drown.

Sigh.

Starting summer break is going to make a huge difference, I know. As much as I love my job, I am depleted of virtually all my energy by the end of the school year.

I've started my list of things that must be done yesterday as soon as possible so I can visually watch the stressors start to dwindle down to nothing.

Maybe that will help give me the sense of control I am so obviously missing right now.

Not Yet, But Soon Enough

The last week definitely ranks among the crappiest I've had in a long while. I officially miscarried on Saturday, and somehow I can't help but think that losing a pregnancy over Mother's Day weekend is the ultimate middle finger from the universe.

Sigh.

I thought I was managing things as well as could be expected. I was teary, but not overly so, until yesterday. Oh holy hell how I struggled yesterday. Even the tiniest thing was enough to send my emotions in a tailspin of despair. I did everything in my power to keep myself from falling apart (hello, stupid here went to work yesterday), and by mid afternoon the inside of my mouth was chewed to pieces in my attempts to stop the tears from falling. I barely managed to make it through an OB appointment before completely losing it in the car on the way home. But I survived, which I guess is the important part to remember. Thankfully, Is.aac was kind enough to let me just have some time to have a really good ugly cry last night.

I am not okay yet, but I hope I'll get there soon enough with time.

The problem, though, is that this experience has strengthened my desire for another baby. When I didn't think it could happen without medical intervention, I was trying to let the dream go. Now that it has happened, it's definitely renewed all of the feelings I tried to squash. I can feel myself being pulled into thinking, planning, and counting days until I ovulate like some sort of infertility addict. At the same time, the prospect of hoping for lightening to strike again only to be let down month after month tears me up inside.

It makes me wonder why something like this happens. Is it the universe trying to fuck with my head? Was it just for the experience of surprise? Maybe it's a sign to not give up believing? I don't know. I wish I did.

I'm sure it would make things a whole heck of a lot easier in my head.

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

Wanted

Wanted: Voice of Reason
Stacie's brain is now accepting applications for a full-time voice of reason. Must be willing to work nights and during any time Stacie's brain has the opportunity to wander. Applicants must be sympathetic and warm yet firm and no nonsense. Duties to include providing reasonable responses for obsessive/worried/panicked thoughts, removing said negative thoughts (either literally or figuratively, whichever the case may warrant), and hiding the computer/iPhone when necessary. Experience not expected, but it is helpful. Salary negotiable depending on efficacy. Position to be filled immediately.

---

I totally need a shut off valve for this brain of mine. Or someone to slap me silly. Maybe I need both?

Yep. That about sums things up nicely. Sigh.

Brain Purge

Edited to add:

You may have noticed that I haven't published the comments you've left. I hope you don't mind if I keep them to myself right now. You all have been very supportive, and I am very appreciative. Thanks, guys.

---

I am okay. Just thought I needed to say that before I wrote whatever came to mind. I'm just getting it out of my head right now.

---

Sometimes I wonder about myself. Been doing that a lot lately. My head has gone to dark places.

For some reason, I am good at making myself suffer, even better at beating myself up over the little things. Lord knows there are loads of little things.

I pull into myself when I get into these moods. I used to think that it was so I could clarify things in my head. I would take a day or two to regroup and then be ready to move on to the next challenge. Now I wonder if I don't do that as yet another way to punish myself. If I don't allow myself to talk about things, to take care of myself, then reason has it that it would take longer to feel better.

I wonder if my moods have been so dark because I may have slipped into PPD? Maybe it's the PTSD issues again still?

Maybe it is just the timing of things with all of these anniversaries surrounding the boys and their birth?

Sigh.

---

I do know I was very depressed after the boys' birth, the peak (or bottom I suppose depending on your perspective) of those emotions hit in March/April. The boys were about 6 months old.

It was only after I started to feel better that I could look back and really see it.

Where I am at right now doesn't even scratch the surface of where I was at back then. These feelings are nothing compared to that time. Seriously.

But it is interesting to me that Jack is 6 months old...maybe this is just how my head deals with all of these hormonal shifts and changes?

---

The big boys turn 4 in nine days. They are wildly excited, wanting only to have lots of balloons, a rainbow cake, and the people they love around them. It is really very sweet to hear them talk about their party.

I hate that I still can't think about the boys' birth without all of the other...what do I call it? stuff? that seems too trivial. drama doesn't seem right either...events wrapped up along with it in some sort of warped yin yang. It saps joy from their birth for me, something that is totally unfair to all of us.

So I fake it.

I am faking it as I plan for their day. But, it sucks that I have to.

---

Sometimes I wonder where all my courage went.

I miss her--that fearless girl who went after whatever she wanted. She was a fighter, man. I was proud of her. I was proud being her.

There isn't much to be proud of when you'd rather just pull the covers over your head and avoid everything.

 I don't, mind you, but I would love to.

---

If this is the peak/bottom of these feeling (oh, please let it be) then the light is coming soon.

I just need to find it and hold on.

---

The boys finally had their ortho appointments today. It was It is over. We got scripts for their new orthotics and walkers/gait trainers. The shitty part is that there is a possibility of more surgery in the future, although that won't be for at least 6 months to a year from now. You know that will mean we will end up at that point, because you know, it's us we're talking about. Sigh. I think my children are surgery junkies. :-(

I'm Just Done. And It's Only October.

That show aired last Friday. After watching it, I was left with the same frustration that I've had for a long time. It pisses me off to no end that the only two people who are talking are two of the biggest nuts from the whole situation. Ugh. (Of course they are getting all the attention...the media loves crazy, and these two have enough crazy for all of us.)

Therapy continues to be a huge stresser. Sh.awn's had 5 sessions canceled (2 we did because they were sick) while Ja.son's had three canceled. Yeah. Sounds fun, right? After my carefully constructed schedule was set (remember it took an entire hour), Sh.awn's therapist injured her shoulder (and got pregnant). No one is there to cover her on one of the days I set. Before explaining that to us, they'd wait until about 5 the day before his appointment to call and say he was canceled for the next day.

So, we are back to trying to squeeze in yet another therapy session on a third day a week to make sure Sh.awn gets all his time.

Jason can't stand his OT. Like, he won't even let her talk to him without losing his shit. This is the ONLY person in the entire building he has reacted to in that way. She'll come tell him she wants to play with him and he'll tell her no he wants to play with someone else. Every time. Then he cries. Every time.

Sigh.

She isn't my favorite person either (she doesn't relate well with kids and has yet to read his eval from what I can tell), but wouldn't you know it that we are stuck with her. If we don't use her, then we'd have to go to a four day a week schedule. That prospect makes my head explode.

All of the NICU emotions are in play here, too. Yesterday is the anniversary of Sh.awn's water breaking. I hoped I'd be over this crap by now. Apparently not.

My relationship with Is.aac is strained. We are doing a lot of bickering; I am just plain tired of always feeling like I do everything wrong. He has this way of nitpicking about everything I do...and well, it just sucks. I can usually blow that kind of crap off, but it is harder to shake now. Plus, even when he is supposed to be helping me, it feels like I still have all of my shit AND his shit to take care of...

I am stressed.

I am overwhelmed.

I am sad.

I am angry.

I am still not in a good place, and I can't quite figure out how to get my head out of this funk.

Friday Night Leftovers - The As Long As A Book Edition

• Sigh. Where to start?
• The boys FINALLY began their therapy sessions last week. They've been four times so far (1/2 hour sessions twice a week). I've only taken them once.
• The day I took them, I spent an HOUR working out the schedule for their therapy. An entire hour. It seems that they are surprised that juggling four different therapists and their assurances that it would be "no problem" to do so was way off base. For some reason, they WILL NOT do a standard time for appointments. They WILL NOT just say bring your boys at 3:30 every Wednesday and Thursday. Oh no. It has to be 3:30 on some days, 2:00 on other days, only PT on some days, only OT on other days, only three therapists available some days...I think you get the idea. It is maddening.
• It didn't help that the OT said only one thing to me the day I went and it was a criticism of Ja.son. She made a comment about how tight Ja.son was as he "struggled" to sit.
• Momma bear didn't take too kindly to that. Bitch, he sits just fine!
• Okay. I may have just thought that.
• Is.aac brought it up with the PT at the next appointment. The PT said she found absolutely NO evidence of tightness, and she had no idea why the OT would say something like that.
• Sh.awn's OT didn't know he couldn't walk. She tried to have him walk to her...
• Um, I'm not sure how she is working on goals for him if she hasn't even read his eval in the first place.
• Or maybe that is just me?
• Which, you know, makes a girl confident in the therapy her children are receiving.
• Now I'm fighting to get them in to the ortho for evals for bracing. That has been another fun adventure.

• Got a call from a news program last week (the one with two numbers that add up to 40). They wanted people to come talk to them about the case.
• Hell no, I won't go.
• As of last week, the program they were taping was going to air tonight. Thankfully, the program was about You Tube instead.
• But it is coming. Makes me worried about what they will say about us this time.
• It gets old hearing how everything was our fault. We have enough guilt over not protecting them without people who have no idea what really happened adding to it.

• Sh.awn threw up on Tuesday. I hate it when that kid throws up, especially when there is no other symptoms to indicate that the throwing up was from something normal and not from his head.
• Jack is teething again...still?...and has been a bear. He had a runny nose on Wednesday night. He was congested on Thursday night. I have finally decided he must have picked up a cold somewhere. Poor guy.
• Ja.son was up five differnet times last night. He woke up with a sore throat today. His nose was running by noon. Sh.awn's nose was running after naps.
• They both asked for Tylenol. (they asked before I had even gotten to that point)
• The good news is that Jack feels better today.
• Hopefully the big boys' colds will be as short lived as Jack's.

• How long does it take for your hormones to regulate themselves postpartum?
• I am in a funk that I can't shake. Is it still hormones? Is it something more?
• My cycles are still wonky, too. They have yet to return to normal with them switching between longer cycles to a shorter cycle to a more regular cycle. They are not at all regular.
• This funny business with my cycles makes me worried about what this may mean.

• It's my mom's birthday today. Is.aac's birthday is Monday. I've done nothing to prepare for either. Looks like I should get on that...

The Box

An ugly post, with ugly feelings. Feel free to skip it and come back another day if you're not up for it. I am okay, just feeling sorry for myself and my boys.

At the fair yesterday, I had Ja.son in the stroller, pushing him toward the livestock area. Is.aac was holding Sh.awn, who was completely overwhelmed by the chaos around him, following behind us. When I finally reached our end destination, I looked up to find Is.aac and Sh.awn gone.

I sent him a text to tell him where we were at.

He responded by calling me an ass and saying he was pissed that I left them.

Not one of our his finer moments to be sure.

It was a simple misunderstanding. Not even something that should have registered on our radar. I went where I thought we were going; he stopped where he thought we were going. It was nothing more than that.

But, I am hugely hurt by it all, even though he has since apologized (today). It isn't even the argument anymore, exactly. The more I think about it, the more that incident highlights the internal struggles that have been just below the surface for a few weeks now.

The "misunderstanding" so to speak of where I thought we were going compared to where we actually ended up.

I thought I had made my peace with things. I had taken all of the hurt over the issue, neatly packaged it up, and put it in the dark recesses of my brain. Then I put a few heavy bricks on top of it for good measure. Keeping it there prevented it from sneaking up on me. It came out only if I let it.

The very physical reaction I had to the thought of going to the BlogHer special needs session knocked the bricks off the box.

Fighting with Is.aac, moved the box front and center.

Tonight, without warning, the box has been opened. All of the pain I'd carefully hid away came flooding back.

I thought I was okay.

As usual, I found out that I am not.

The guilt has hit full force. Oh how I hate myself for causing* their struggles--our struggles.

My head...my heart...my entire body screams that things are not how they are "supposed" to be. Where we are is not where I thought we were headed--where we should be. Things should be different. Easier. Less. More.

I hate myself for thinking it, for wishing things were different.

I hate feeling that because I continue to struggle with this issue, I am sending the message that I am not okay with my boys. How could it not, when knowing that if I wished this away, it would change them?

Right now I can't "just" embrace the challenges in our lives, work through them, and see how blessed we are. I am feeling sorry for myself and my beautiful boys. I'm seething with an intense anger at the universe because my family has to fight for every single fucking thing we have.

Right now, I am wallowing in the pain, holding on to the anger. I am grieving the loss of "typical" one more time, even though I hate that it will not likely be the last time I grieve.

Right now, I am feeling oh so very alone.

---

Soon, I'll be strong enough to capture these emotions and put them back on the shelf in the corner. I may be quiet for a few days, though, until I can make that happen.


*Yeah, yeah. I didn't cause the boys to be born early...blah, blah, blah.

One more day...only one more day of school.

My brain is mush.

The drama at work has reached epic proportions. I just want to walk around work telling people to just shut their pie holes already. I hate stupidity and drama. I really do.

I got a fairly decent sunburn on a very overcast day today. My face hurts like hell. Oh, and I look like hell, too.

I am beyond worn out. (Jack has not been sleeping well. He apparently needed to up his nipple flow. It only took me two days to figure out that his refusal to eat more than 2 ounces at a time even at night and his increase in GAS and FUSSINESS and GENERAL PISSINESS was because his size 2 nipple was frustrating him. Seriously. Where is this kid's manual?)

I. Can't. Wait.

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.

Control

Thank you for the kind words about the last post. I am doing better emotionally today. I am still a bit fragile, but my head knows that I am doing what I can to give myself and the baby the best possible outcome.


The problem is I feel I've lost control. In my head, a controlled situation is a much safer situation. There are no surprises when things go exactly as planned, which is good because I now equate surprises with danger.


Don't get me wrong. I am smart enough to know I actually "control" very little in my life. There was a time when I thought I was in control. What I didn't realize was that I was only in control because things worked the way my mind thought they should.

It wasn't real, just merely coincidence and a whole lot of stupid luck.

Our lives over the past several years--the IF, the pregnancies and miscarriages, the boys' pregnancy, the NICU, my dad's death...all of it and more--has made that realization very, very clear.


Oh how I miss the feeling I was in control...even if it was only a delusion.


Sigh.

Still in the Closet

For those of you who read my other blog (and you should because I can be clever--just try not to leave a trail back to here if you can), you may have noticed that I have never come out and addressed some of the issues that the boys face. In a sense, we've never come out of the closet. I've never talked about the boys' IVHs, or the hydrocephalus, or the shunts. I've barely mentioned anything about the surgeries or the hospital stays. The Very Dark Days were handled with silence. Very few people in my real life even know that the Very Dark Days even occurred.

My closest friends only know snippets of my life over the last few years. They know the boys, and it is obvious that there are delays, but they don't know everything. For some reason, I can't tell them all of what we went through. I've even tried a few times. I get into a little bit of it and will just stop, unable to finish.

I think the only person who knows the majority of our story is my mom, but I will admit to even omitting details when I speak to her.

The omission of those very important details is bothering me. A lot.

Contrary to what you see on this blog (because really, what haven't I told you), I am a relatively private person. I am a great listener. I am an awesome at commiserating when needed. I will even share select things about myself. The info that I do share, however, is revealed on a need to know basis and is definitely said as a version that is wrapped in a pretty package.

Rarely will I ever admit that I am upset, struggling, or stressed to anyone--that even includes to my husband. (When I said I was stressed over some major junk at work the other day, everyone was very concerned, almost to a point that was comical. That is how seldom I say those words out loud.) To me, it feels that an admission like that implies I can't handle things; it means I am weak, and weakness is something I've learned to avoid at all cost.

So I don't let on how challenging things have been at our house at times.

I don't write about the freak outs I have because Ja.son's neck was sore last night and how I googled the hell out of what that could mean. (Can I just say I am so thankful the boy seems to have pulled a muscle in his neck? No fever. Seems to be better for the most part today. But last night, the thought of meningitis scared me to no end.)

I might say that someone threw up in a casual way, but I never acknowledge that seeing my boys vomit ignites a fear so deep inside me that I can almost no longer think.

I don't discuss my love/hate relationship with therapy, or my fears that I am not doing enough to help my boys, or how stressful things have been to my marriage.

The problem is those omissions are my life.

Now, it is starting to feel these omissions mean I am hiding.

Like I am lying.

What if these omissions are hurting my boys because I am not completely celebrating them in their own uniqueness?

But...

What if these omissions are protecting them, for the time being, from all of the ugliness in the world--from ugliness like I felt the other day?

So I am here struggling with these emotions. I am struggling with whether I should just lay it all out there for the world. I am struggling with whether I should consider what I am doing as protecting my boys from the stupidity of others.

I am struggling with the question of whether there is a middle ground where I can feel comfortable.

Did I mention I hate to struggle?

Um, yeah.

My Feelings are Ugly, but They're Real...

This has been one of those very hard weeks. Nothing crazy has been happening (thankfully) but the weight of the world has been on my shoulders anyway. And it has made me intensely angry.

Like I hate the world angry.

Like I want the world to suffer angry...

Which is not like me.

There are times when I get into a poor me mode, and I have a hard time shaking it. Now seems to be one of those times. The unfairness of it all just sucks.

This week I had the meeting with the service coordinator from early intervention. Talk of having the boys tested to see if they qualify for continued services was brought up, and I signed the paperwork to get things started. In my head I was screaming and raging about how that was the LAST thing I wanted. On the outside, I kept relatively quiet and signed the damn papers.

That same day, we got a note to take to our insurance company to get Ja.son a walker.

And my heart shattered into a thousand pieces...

I hate this. I hate this. I hate this.

I hate it.

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I need to learn how to stop fighting. I need to learn to accept.

Oh how I am struggling with that.

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I recently joined a preemie board. It took me a while to even post anything there. They all had preemies, but many of them seemed like everything was just so...normal.

We don't fit in there. Maybe I don't fit in there? I am trying to, but....

Maybe I am just too hateful and my feelings are too ugly for me to be a part of groups like that? Because damn if I haven't asked myself why they got to be so lucky.

Why did my boys have to be the ones with lingering issues?

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I saw this on another preemie blog. I've seen this one before on Caryanne's blog also, only hers was about parenting a child with cerebral palsy instead of premature. Both times I cried big, ugly boo hoo tears.

Did you ever wonder how the mothers of premature babies are chosen?


Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation.

As he observes, he instructs his angels to take notes in a giant ledger.

"Armstrong, Beth, son. Patron Saint, Matthew.
Forrest, Marjorie, daughter. Patron Saint, Celia.
Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity. "

Finally, he passes a name to an angel and smiles. "Give her a preemie."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a premature baby a mother who knows no laughter? That would be cruel."

"But does she have the patience?" asks the angel.

"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of its own. She has to make it live in her world, and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles. "No matter, I can fix that. This one is perfect She has just the right amount of selfishness."

The angel gasps, "Selfishness?! Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says momma for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see--ignorance, cruelty, prejudice--and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her Patron Saint?" asks the angel, his pen poised in the air.

God smiles. "A mirror will suffice."

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I know these feelings will pass. They always do.

Soon, I'll feel better...stronger.

But not now. For now the sadness is heavy in my heart.