#Microblog Monday

"Mom, why are my legs on backwards?" he asked just after dinner.

I stopped what I was doing and looked at him. "What do you mean your legs are backwards?"

"That's what Daniel asked me. He wanted to know why my legs were backwards." He looked down. "It sort of looks like they are. See?"

"Babe, your legs are not backwards. Your legs are just the way they are supposed to be... What did you say to Daniel after he asked you that?"

"I told him I was born very early and my brain got hurt and that now it takes a little more concentration to get my legs to do what I want them to do."

"That's a really good answer, Jay. What did he say when you told him that?"

"He didn't say anything. It was time for recess anyway. We went to go play basketball." He turned away then, picking up his police car as he started making siren sounds. It was clear our conversation was done.

He didn't say anything more about it the rest of the evening, yet I can't get the moment out of my head...

Sigh.

~~~

Stop by Mel's for more #Microblog Monday posts.

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!

Weekend Leftovers

This week is the deadline to choose our insurance plan. Based on the economics, especially now that Is.aac is out of work, I think we are forced to try out the HMO for the summer. I did go to the insurance fair the district offered and spoke to a woman in their pediatric division and was assured that they have people to meet our needs in all of our specialties.

I am not exactly happy with the decision, but there are not many options. My plan is to do all of this year's summer appointment (ped, neurology, neurosurgery/CT scan, possibly explore new walkers) through them and "meet" their doctors.

I am sad, though, to have to leave the doctors we have now. I trust them. They understand us and our needs. I hate that we don't really have much choice.

If I don't like the new HMO, it's open enrollment again in September (for November 1 start) and I can switch back. It will always be an economic gamble if we went with the PPO option, but I will do what I need to do if needed. 

*On a side-note, it does not make me feel all that great to hear all of this noise about a pharmacy strike looming for our new HMO. :/

~~~

Latest email from the teacher...

Can you believe how far we've come with these boys of yours? There has been so much progress and it has been so exciting to be a part of it. I could tell by their answers [on their teacher appreciation questionnaire] that our day-to-day has impacted them and that makes my heart smile! 

 

I love her!

 

I asked her if she's going to move to first grade because I don't know what we'll do without her. I was kidding. Mostly. Alas, that pesky issue of meeting the school's needs is going to prevent that. Bummer.

 

~~~

 

It had been hellaciously hot last week.

 

I know you guys are probably rolling your eyes at me, but in my neck of the woods, it is a rare day when the temp is in the mid 80's. It is even rarer when it hits 90's. I live two minutes from the beach, so it just doesn't get hot. The last two days, though, we were in upper 90's and broke 100 degrees.

 

My classroom does not have air-conditioning. With every single window and door open, it was still 93* in my room at 1:00. My document camera/projector even quit because of the heat. It was brutal.

 

I am so, so relieved that temps should be back to normal for us this week.

 

~~~

 

I got a tiny bit sunburned this weekend. I managed to miss a two inch by 1/2 inch section of my left upper arm when I was applying sunscreen. It's an angry red. Fortunately, other than when I directly touch it, the burn itself has been no problem.

 

The real issue is that I have hives. They started right on the sunburn and radiated out from there. It is the oddest thing.

 

And they itch like crazy!

 

~~~

 

5.weeks.left.thank.GOD.

 

~~~

 

I bought tickets to take the boys to a Se.sa.me Street show on Saturday. Now I'm wondering what the heck I was thinking.

 

I am really nervous about it. Am I the only one who breaks out into a sweat at the thought of taking her children out into the real world? I do take them out and all, but holy hell the stress involved in trips like this wears me out. The mere thought of trips like this wears me out.

 

This is clearly a case of the spirit is willing, but the body is weak.

 

 

Stop by Danifred's for more Leftovers. :)

Progress and Not

So, when we last left our kinder/IEP drama, the district had yet to respond to my second email. Shockingly, or not, they still haven't responded to me, but they* did meet with the boys' teacher and her union president. (I must again profess my love for their teacher. She is wonderful!) The teacher was able to nail down some very good things for us. The district agreed, both verbally and in written format, to a number of points that will make things easier for both the boys. The district office told her that Sh.awn's new, permanent aide will start work on tomorrow. Along with her, the aide, D, who was taken from him after we signed the IEP is coming back and will work with the new aide to minimize stress on Sh.awn while she learns about him and his needs. We have daily access to D for a guaranteed minimum of three weeks with the understanding that we can keep her there longer should we need to. (I don't think we will even need her for the three weeks, but holy hell I'm not going to say that.) There were also some other problems the teacher was able to finally solve in this meeting.

This is good news - Sh.awn can finally get the stability and continuity he needs and deserves.

Unfortunately, the district's lack of response to me has led me to write email number three. (Document, document, document everything.) I was more than upfront in letters one and two with my expectation that they keep us informed with the status of Sh.awn's aide search. We've had no official notification that the new permanent aide has been hired, much less that she is even going to start tomorrow. All we know has been relayed to us through private email conversations with the teacher.

I've asked for another IEP meeting to include an amendment about the notice for staffing changes. I even went back and reviewed our notes with the intention of counting and including the number of aides he's actually had in the 101 days of school. I knew it was a big number, but in all honesty, I was shocked.

14.

My poor guy has had 14 aides. That averages out to a new aide every 7-8 days.

I have dates and names of all of the aides he's had thus far, and I included them in my email. And you know what? It was so sad to write all of it out. I can't get over the ridiculousness of that number.

I am pissed me off to a whole new level, which based on how pissed off I was before, seemed pretty damn near impossible.

The way I see it, there is no way that they can argue that this number of aides is anywhere close to okay. So I am going to demand and aim high, so to speak. Should they refuse to amend, I'll push forward with an advocate as I stress the district has proven they are uninterested in Sh.awn's overall wellbeing.

The fight continues. Wish me luck.



*The teacher met with the direct supervisor of the woman I've been dealing with all this time. I again included this person in my request for another IEP meeting. I was very upfront about my displeasure in the lack of response from the bitch woman I've been dealing with all this time.

Waves and Such

I've reached out to several friends I have in the education world. Although I wouldn't have necessarily thought so at first, I am blessed to know quite a few very knowledgeable people in a wide array of fields, and when asked, they all readily jumped in to help. Mostly that was through giving me information and connecting me to others who may be able to help, but still, I quickly found that I was not exactly alone in this fight to get what I think is best for Sh.awn. People wanted to help any way they could.

 

I am grateful.

 

One of my friends commented that she didn't know how I do it, that her son was upset about going to school and cried in class for a week. She said she almost fell apart with worry and heartache. "This can't be easy for you," she said.

 

It didn't help when that stupid online quiz that asks "What is your parenting style?" told me that I am "Overwhelmed." You ain't kidding, stupid quiz. I am.

 

It is during times like this when I really question how strong I am. Frankly, all I want to do is curl up in a ball and cry. I don't, obviously, but that doesn't mean I don't want to at times.

 

My stomach is in knots, my digestive track may never be the same again, I struggle to shut my mind enough to even sleep at night and there have been some pretty heated conversations between my husband and I over all of this (he didn't know what to do and thought I was overreacting originally), but I am trying to direct my frustration in a way that will get Sh.awn and the rest of us what we need.

 

For me, there is comfort in action. When things are taken completely out of my hands, I struggle. The mere act of sending the boys to school and not having direct contact with that process outside of homework and emails to the teacher has been really hard. But, I try to focus on the fact that even though it may seem otherwise a lot of the time, there are good people out there (of which the teacher is included) who do care about my boys.

 

But this kind of situation reminds me that there are so many other parents who don't know what to do when things like this happen. They don't know they can fight back. They are pressured or intimidated into doing what the district says. It makes me angry to know if the district is willing to do something like this to us, then they are doing this to other kids/families, too.

I can't stop thinking about those other kids...those other families of kids with special needs. What do they do when they meet resistance? I know I can fight for my kids, and I have the expectation that with determination (and probably some sweat and tears) I will ultimately be able to make things better for my boys, maybe not with this issue but definitely overall.

 

As uncomfortable as it is for me to make waves, this is what I need to do to help make things better for my kids. I know that, so I do what needs to be done. But, I guess there is the bigger picture--maybe the other kids in the district need me to stand up when I see something is wrong, too.

~~~

For what it is worth, the first email I sent went largely unanswered. I replied with a much stronger worded email which included the IEP accommodations that this decision blatantly ignores.

I am dealing with the manager of special ed for the district. I also cc'd the superintendent and the associate superintendent (the manager's direct superior). When she replied, the two superintendents were conveniently left off of the reply, suggesting that I may have hit a nerve with her. I, of course, was forced to bring the sups back into the loop with my second email.

In the long run, I may only succeed in making this person sweat (and ultimately changing his IEP so it doesn't happen again). I have a strong sense of urgency...each day there is no resolution, the longer Sh.awn is dealing with this upheaval in his world.

We shall see what round two brings.  

Technically

It's interesting what happens when things are based on that word "technically."

Technically, I had eggs and milk for dinner. So what that those eggs and milk were part of a delicious cake and ended up with little to no nutritional value added to my diet?

We are now in another battle with the school district. Less than four days after we signed the IEP, the school district decided to pull the aide Sh.awn has had for the last several months, the one who has helped him overcome some pretty challenging physical and behavioral obstacles, and move her somewhere else. They did so without any warning on our part, and didn't even let Sh.awn or the teacher say goodbye to her.

Poof. Just like that, she was removed from his life forever.

The district is now saying this aide was always "temporary" for Sh.awn (news to us) and she is needed elsewhere. The district's solution is to give Sh.awn a temporary aide, one who does not know him at all, for "a few weeks" while a "permanent" aide who they "think will be a good fit" completes necessary paperwork and is hired. If the old aide was always considered "temporary," then why was no permanent replacement hired? It isn't like they didn't know that one would be needed. Why take the one he knows before a replacement has been found?

It has even been suggested that Sh.awn's teacher take time away from her entire class in order to train the current temporary aide. (Not her job at all, and frankly, as a teacher this upsets me on a whole other level.) I can only guess that she would have to do that yet again when the permanent aide has been hired.

How can that be fair to Sh.awn, especially when it is well known that he needs structure and routine in order to thrive in his academic setting, to force him to undergo transitioning through two new aides? How can that be fair to the teacher or the rest of the class?

This is going to be a huge setback for Sh.awn, who will feel it the most, and also for all of the students in his class. We have the unique perspective of seeing both sides of this issue. We see how it impacts Sh.awn when he does not have consistency. Behaviors that had been eradicated for the most part, have now returned and will likely continue for the foreseeable future without a consistent permanent aide to help him succeed. We also see how it impacts Ja.son, along with the other students in the class, when the teacher is called away from the class to help an aide learn how to help Sh.awn. Ja.son's education will be disrupted as well.

It is behavior like this that gives schools and school districts a bad name.

Technically, the district has provided an aide. Technically, that is all that is required of them.

Technically, this is all just shitty.

The adults responsible for moves like this should be ashamed of themselves.

Sigh.

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.

Sigh

Yesterday was December 19; the day I imagine I would have delivered my miracle baby. As much as I try not to allow days like this to take their hold on me, this one was hard to shake. Oh to be snuggling a newborn, inhaling that new baby scent.

Today was December 20; the day Is.aac learned he will be officially laid off from his job of thirteen years as of December 31. I am beyond angry about all of it, as there were promises that this wouldn't happen. "Your job is secure until the end of 2014," they said earlier this month. Lies, all lies.

I think some would say that I should be grateful that I don't have a newborn baby to consider in the middle of all of this mess, that his layoff would be twice as devastating if we had to deal with me on maternity leave and him being out of work at the same time. They'd tell me that miscarrying that very wanted baby was part of a supreme being's plan...a blessing in disguise even.

I can't say those things though. I don't think I ever could say those things. To me, the timing of our due date and his lay off doesn't mean that not having one makes the other easier to digest. To the contrary, all they've done has made this week even shittier than it would have been otherwise.

~~~

It is the really big events like these that point out how different Is.aac and I process and deal with things. It is hard for me to understand where he goes in that head of his. He says little and shares his thoughts and emotions even less. It's isolating for me and ends up magnifying my stress tenfold. I need immediate action, even if that means simply processing (aloud so I'm included would be nice). He sits and reflects, quietly turning possibilities over in his mind all while I lose my own because he just. won't. talk.

~~~

I'm trying to put on a happy face for the boys. They are SO into the whole Christmas thing this year, loving it all--every discussion of Santa, crafts we've done, singing carols, finding that damn elf each morning, everything. Their anticipation is palpable, and I am enjoying watching them enjoy this season.

~~~

Sigh. I keep trying to tell myself that things will be okay. I went right to work calculating money scenarios. With unemployment, it will definitely be tighter, but it won't break us. It will, however, affect my mom (she is our childcare and we pay her), and that has me more than a little stressed. She does rely on watching the boys.

I'm also trying to remember that this is the push he needed to actually find a job that will pay him what he's worth. He was underpaid in his current job. His loyalty to them made him unwilling to really fight to be paid what he was worth. As unsettling as this is, I hope it will be a good thing once we are on the other side.

But right now, things suck quite a bit. Merry Christmas, right?

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.

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.

I Never Knew

There so much about having a baby I never knew, so much that our past experience hid and prevented me from enjoying and living.

These eleven days with baby Ja.ck have highlighted all those little things we missed. Contrary to what I thought, instead of feeling a sense of healing and peace from a typical birth experience, the pain from the boys' early days has come flooding back.

I didn't know what it was like to announce that I had a baby and have people genuinely happy because of the birth. With the boys, not many people bothered to tell us congratulations; those who did held a look of fear in their eyes when they said it. There wasn't joy at the announcement of Sh.awn's and Ja.son's births, only sadness.

I didn't know how everyone would flood to the hospital to visit and celebrate the new life. After the boys were born, I was there for two weeks, yet I had no visitors outside of my mom. People didn't know what to say, so they stayed away. During the 15 excruciatingly long NICU weeks, only a handful of people ever got to see the boys in person, and that includes close family members.

I didn't know what it was like for me to be the focus of the medical profession, to have many more checks and visits from doctors and nurses than the baby did, or to be the one with the wires and tubes. The baby had a daily weight check and a few temperature checks. That is it. Blows my mind.

I didn't really know what it was like to stare at my baby's face as he slept...

with the freedom to hold him for as long as I wanted without eyes and monitors scrutinizing my every move...

to not have to ask for permission to even touch him.

I didn't know what it was like to feel the immediate connection with my baby. It took me weeks months to really bond with Sh.awn and Ja.son. It has taken me years to forgive myself for that. If I am honest, maybe I never have...

I didn't really know that a newborn displays a whole host of emotions on his face while he sleeps. (I love watching his face change as he sleeps. Oh my, he is such a handsome boy.) There was always something obstructing my view of the twins; I missed seeing much of the their faces for months.

I didn't know what it was like to not live in a constant state of overwhelming fear.

I didn't really know how HUGE a mere eleven weeks and one day would be to the health of a baby,

that the reality we lived for so, so long was that extreme.

How could I know?

This week has been hard not because Ja.ck is a challenge (he isn't), or because I am sleep deprived (which is to be expected), or even because I am battling some sort of bug.
This week has been hard because I am struggling with the unfairness of it all--of how I still hate that the big boys didn't get an easier start to life, of how things could have been...maybe should have been. It makes me sad actually.

The "loss" of that time is heightened, haunting me.

I didn't really know how much prematurity had stolen from all of us.

Yes, I imagine that some of these feelings are compounded by the hormonal changes I'm experiencing. Some of it is guilt's ugly head rearing again even though I have tried over and over again to knock that beast to the ground.

But a lot of it, I think, is that I didn't really know.

When I didn't really know what others experience, somehow I didn't feel like I missed out on so much. I fooled myself into believing that our experience couldn't have been all that different than everyone else. A baby is a baby, right?

Sure, it was obvious to some degree that what we went through during those days was a far cry from "normal" even for a preemie birth.

But, I didn't really know.

Now that I do, it just plain hurts all the more.

There's a Jumbled Mess In My Mind

The last few days have been physically and emotionally draining to say the least.

Kidney stones are no fun at all. I think I am finally feeling better. (Oh, please let me be on the upswing.) Let's just leave it at that.

---

The service was...very, very hard and affected us both deeply. So much so, that we've only been able to talk about it in very small spurts between the two of us. I don't know how to explain it, but we have agreed that we both felt as if we were living through what our alternate universe very likely was. No.ah was 4 months old. When Sh.awn was struggling so with his surgeries, he was so was 5 months old--incredibly close in size and in age. Too close.

No.ah's mother's pain tears at me. My heart physically hurts for her and will continue to for some time I am sure. I talked to her briefly a few times. She pulled out the journal I had given her right after the boys were born. She carefully showed me a few of her entries...and my heart shattered even more. She said it is her most treasured gift.

She is such a strong person, filled with faith and beauty within. Seeing the testament to her love for her boy on those pages was proof.

I know she doesn't even realize that yet, but oh my goodness she is.

She regularly apologizes to everyone for her tears. Sees them as weakness. If only she could see that they are not weakness. Each one is filled with only strength and love.

I gave her this quote on a sheet of paper the last time I saw her:

'There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief and unspeakable love.” --Washington Irving

I hope can she see the truth in it.

---

Ugh. I wish I could figure all of these emotions swirling around in my head. My thoughts are still too jumbled to make any sense of it all.

Such Is the Way of the Universe

I had been feeling all positive and...dare I say happy? this weekend.

Then, Whammo.

The universe, true to form, has dealt another blow.

Little No.ah passed away this morning.

I am in tears for them.

I need to figure out what I can do for them...



I am back to being shaken and unsure--afraid of the ugly side of life.

---

I am home today. It just worked out that way. (I can't imagine holding my shit together in front of 130, 7th and 8th graders.)

Last night my back started hurting and the left side of my uterus is sore, especially if I try to lie on my right side. Not sure if I pulled a muscle or it is something more. This morning I have the intense urge to go to the bathroom only to produce two or three drops. When I get up to leave, I feel like I have to go again immediately. There's no pain or burning.

Good news is after a slow start today, the baby is back to moving and kicking. Whew.

I am going to be safe and not sorry, so I have a call into the OB to get checked out.

I don't need any more whammos.

Updated: Bladder infection. 5 days of antibiotics. If I don't feel better in 2 days, I go back.

Spent

We went to visit. I ignore the place at the other end of the long hallway, instead focusing on why we are there.

The thing that instantly struck me is that there were no monitors attached to his little body.

Only an IV and his nasal cannula.

No need to monitor his vitals any more I suppose...

The reality of the situation rips at my heart.

It is so, so WRONG. It shouldn't be this way!

He is such a sweet, tiny little guy.

He is struggling to breathe, his chest contracting with every breath. He hasn't really opened his eyes today.

I hold him for a little bit to introduce myself. I snuggle his body close to mine while smelling his sweet little baby scent. Let him know how much his family loves him and that people from all over the world are praying for him.

It's all so wrong.

We talk and even manage to laugh about a few things. There are some pictures a photographer had taken of No.ah yesterday. He was so alert just twenty-four hours ago! So different from what he is like today.

I hug my neighbors before we leave...

Tell them that we continue to pray--for No.ah. For them. We are here for them whenever.

It feels like there is much more to say except I can't for the life of me figure out what that is. More people arrive, so there is no time to think about it anyway.

We don't say much about the visit on the way home. My SIL is at the house, and I can feel that I am on the edge emotionally. I don't want to let my emotions out until I have a chance to be alone and process. He is struggling as much as I am, I think.

She finally left a half an hour ago.

And now it is time to cry.

Little No.ah

From what I understand, little No.ah has been sent from the NICU in the big children's hospital to hospice care at our local hospital. The details of what is going on with him is still fuzzy to me--and there is no way I am going to go over there to probe them for more!--but from what I can piece together from snippets here and there, No.ah had a muscle biopsy back in mid September. The results from the biopsy, which was for the most part forgotten about, came back last week and indicated that No.ah has some sort of terminal disease. "Cancer" was never said, so I am not clear on what the terminal disease is exactly. There really is no idea on how long he will be able to hang on, it could be days or months.

In the end, it doesn't really matter why...all that matter is that he's leaving this earth far too soon.

Is.aac and I will be going to spend time with our neighbors and finally meet No.ah tomorrow or Thursday at hospice. The day will depend on whether they are able to find child care for their other two little ones at home. Our neighbors want us to meet No.ah, and we are both honored that they want to share him with us in person.

I have to be honest and say that I need to find some inner strength to be able to do this visit. It isn't because of actually seeing No.ah makes me nervous. I am glad I'll be able to celebrate No.ah's life with our neighbors and help keep his memory alive/support my neighbors.

Instead, it is because the hospice area he's at is just down the hall from the NICU our boys were in for so long.

I am struggling with that part...

and freaking out about it a bit.

Or a lot.

Am I Strong Enough?

I spent the day trying to distract myself from what was happening next door. I cleaned. And cleaned--and probably over did it. But I was never quite able to pull myself out of my head.

And I physically jumped every time the phone rang--my heart sinking with the feeling it was them.

They sent a text at about 10:00pm. He is still alive, but fading. She said that Noah was ready--that they were ready. I've been crying ever since.

---

It physically hurts me to see them--when they come home from the hospital or even when I see that their car is gone because I know where they must be. I get a familiar pang of sadness when I see their haunted expressions or hear the latest updates on the baby. Ugh. I can literally feel the emotions of our own experience almost as if I am living them right now.

My neighbor's pregnancy and birth/NICU experience has truly sent my PTSD issues into a tailspin. I suppose it was bound to happen, as you can only bury things for so long before they find their way to the surface. Yet, it surprised me that I was having this effect from watching their experience mirror my own.

I also have to admit that I am not prepared for dealing with these feelings. My impulse is to squash them and push them neatly back into the compartment of my brain from which they came.

Oh boy have I tried to squash them.

---

If it can happen to my neighbors, who is to say that something won't happen to us? So, I've been second guessing myself today--afraid of all the negative that can/might happen. Because they do happen, even when it isn't fair.

Should we have tried for another baby?

Should I have been more aggressive and pushed a transabdominal cerclage rather than a vaginal cerclage? What if this cerclage isn't enough?

Should I assign myself to bed rest, even if the dr. doom isn't yet worried about my cervix length?

What if my body fails...again?

Are my worries just fear of the "what can happen" or intuition that I am not fully paying attention to? How do I know the difference? How can I truly trust myself anyway?

Sigh.

I recently told someone who was worried about the risk of another pregnancy that "you just take all the precautions you can. As you know, there never is a guarantee. I suppose there is a lot of faith that goes into that part. But, I will admit that having faith that things will work for you is incredibly challenging when you are used to life shitting on your head."

My faith has been shaken. That familiar fear of being shit on yet again is back. It feels today like it is just a matter of time before my world will shatter apart.

Again.

I wonder if this time I'll be strong enough to pick up the pieces.

---

As miserable as I've been all day long, it is nothing compared to what my neighbors are living. Oh how I feel for them...

My Heart Is Heavy

Tonight we got the devastating news that our neighbors' little boy, Noah, will pass soon. There is nothing more the doctors can do for him.

I am heartbroken for his family. Please, if you can send a prayer or two into the universe for my neighbors and their little Noah, do. They will need all the love they can get.

Both Is.aac and I have been in a daze since we heard the news--each of us lost in our own memories of those Very Dark Days when it was such a real possibility that Sh.awn wouldn't make it. That fear and the pain from that time bubbles to the surface in times like these. Our family got lucky and we got our happy ending.

For some cosmic reason, my neighbors' family will not.

It's so unfair...

Failed

So.

I mentioned last week that the boys had their last therapy sessions with Early Intervention. I got their "evaluations" in the mail this week, and I have to say that I was disappointed. I always think they low ball the boys' abilities. Whatever. They. Are. Rock. Stars.

I know what my boys are capable of, and that is what matters at the moment.

Except it isn't. Sigh.

As much as I want to, I can't keep the boys in my protective bubble.

Boo.

After a series of problems with our Regional Center (Early Intervention) we finally got our referral to the local school district for preschool. On Thursday, we take the boys to an "observation" by two psychologists and a speech pathologist to assess whether the boys qualify for services.

I am beyond nervous and a lot freaked out about the whole experience. If I am honest, I'll admit to being teary about it.

My whole being is screaming with the...wrongness of it all.

I hate that there are people whose job it is to pick apart my superheroes and find all of their weaknesses.

They won't focus on what can be done, only on what can't.

Yes, I get that they'll look for where the boys need the most help so they can address those weaknesses.

Yes, I get that (gasp!) these people might actually be able to help the boys achieve even greater things than they might have otherwise.

But, ugh. It feels awful to know that they will once again be judged..set apart...seen as different.

It breaks my heart.

As much as the mind knows I did everything I could--do everything I can to give my boys the best life possible, my heart still questions. It is times like these when the guilt ignites.

When I feel like I have failed them.

---

My next appointment with Dr. Doom is Friday. It will be my first cervix check since the cerclage. Every little ache or strange sensation has me worried.

Please let my body be doing what it is supposed to do.

I don't know how I'll handle failing another baby.

17 Days

Three years ago today, Jason's water broke. We headed to the hospital, where I had a course of steroids to hopefully mature the babies' lungs when they come early. I was exactly 26 weeks pregnant.

In 17 days, my boys will turn three. The countdown to the boys' birth is on.

I keep telling myself that these "anniversaries" will someday lose their power. I suppose to some extent, they have, but the sadness is still there.

The guilt rears it's ugly head.

The what ifs come to the forefront.

I know that I tried to do all that I could to keep the boys inside for as long as I could...

still...

Sometimes, I wish I could go back to that time and do something different. What, exactly, I am not sure.

I wish it anyway.

---

Please, if you haven't yet, stop by Louise's blog and leave your condolences for her family. I'd love for them to be blown away by the support our community has for one of its own. Louise deserves it.