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!

Hard Week

School has been a huge adjustment for all of us, and I have to say that things are far from perfect. To recap:

Day one was okayish but hard on Sh.awn. They did not have an aide in place for him. There was an aide, but she was suppose to split her time with some other kids in the school. The principal stepped in to help be his aide when the other aide was gone. That didn't go well. Sh.awn is not his best when there are a lot of transitions. He didn't know these people who were coming and going. It was just...not an ideal situation. Then they decided that the boys won't leave out the same exit as the other kids because there are other parents lined up with the afternoon kinder kids where we'd need to exit. The walkway isn't big enough for us to get through if other people are there. So now we go through the school and out the front exit. It adds a lot of extra walking for the boys when they are already just tired. Sigh.

Day two was a little better, but still not without issues. The aide was now going to be with Sh.awn all day, but how effective can she be when she has to ask Is.aac what to do when Sh.awn tells her "no." Um...tell him yes and get on with business? When I talked to her after school, she said she wanted me to come 10 minutes early to pick the boys up because she had to go to lunch before she had to work with another student. Again, um...No.

Day three was the day the boys were kind of done going to school. There were tears and they just didn't want to go. Got them calmed down and in school only to find there was yet another aide in there for Sh.awn. He spent the day crying off and on, asking for me. The principal was again in and out all day long trying to help out, but let's face it. They made a hard situation even harder by given him yet another change to have to deal with during an already traumatizing week. Sigh.

I ask them how the day went and don't get much info from them. The second day they forgot to pick up the boys' homework and didn't give us that night's homework. We didn't get it the next night either. I don't know if there was homework for day three.

According to the other teacher in the room (the kinder teachers share a room and help the other out when not teaching), Sh.awn is ready for school. He makes it about half way through (until recess) before he just falls apart. He knows so much, but he is just really struggling with the transition.

Sigh.

I knew there would be a challenge in the transition to school for the boys, especially Sh.awn. But I have to say that watching him go through this is really, really hard. My stomach has been a mess for days. Is.aac and I are at each other's throats over the stupidest things. It's just...ugh.

To top it off, the boys are sick with fevers and throwing up. (although I did paste in Is.aac's texts to me about Ja.son getting sick over on the boys' blog because it was pretty funny how he described it)

It's been a hard week.

Tomorrow I go back to work, so I'll be even more out of the equation. I can't help but think things are spiraling out of control and I don't know how to stop them.

~~

Forgive the crappy writing. I just can't bring myself to even go back and reread what I wrote. Blech.

Kinder

We have the first day under our belts. It went better than I expected, although there are still a number of things that need to be ironed out (more on that later-too exhausted tonight to go there).

I dreamt of forgetting about my children at random places and leaving Jack in the car overnight. (Issues much?) It was a night of tossing and turning with little sleep for me. Is.aac and I even had a huge fight last night. We were pretty stressed.

It's that feeling of anticipation. I hate it, which is why I try to not think of things until the very last moment. I can't deal with the build-up and get so anxious. Just get the day here and get it over so I can regroup. Sigh.

Anyway, we decided that Is.aac would take the boys into the school. Sh.awn is in a long standing "mommy only" stage, and I thought maybe my presence would make him be more upset than he'd be with his dad. So...as hard as it was, I stood back on the sidelines. Like all the other parents, I stopped at the gate, kissed my boys, and sent them off to school. I smiled and waved to them as they entered. Then I watched Is.aac (the only parent beyond the gates) go in and do the part I wanted to do but knew I shouldn't. It isn't about me; it's about them.

I held up pretty well. Not a single tear even. (Go me!) That was until Is.aac sent me contraband pictures from the inside.

Story time on the rug- Sh.awn in the black shirt with the name tag
on his back. Ja.son in the upper left hand corner in the striped shirt.

My boys at their desk. Do you see his hand raised...
oh I am so proud!

There is still some tweaking to do and some things I am not exactly please with at this point, but it's an okay start. Fingers crossed that as we get into the routine, each day goes better than the last.

They said they had fun. They said they liked their teacher and made friends (no names, however). That's all that matters.

I wrote about the day on the boys' blog if you want to read more and see some more pictures. No pretty first day of school picture. It just didn't happen. :(

A Moment and A Fear

Today, Sh.awn and I sat on the floor and played with magnetic letters. He would choose one, we'd sing the Letter Factory song, and then put it on the fridge. Every few letters or so, we'd see if we could make words.

He was just sitting there, having the best time. As tedious as the Letter Factory song is for me, I had a lot of fun playing with him and watching him enjoy himself.

Once upon a time, there were so many unknowns about the future Sh.awn would face. He had a massive brain bleed at birth. He had thirteen brain surgeries before he was even two. How would all of that trauma transform his life? Would he sit? Use his arm? Walk? Talk?

Would he be cognitively typical?

I marvel at this kid and all that he has accomplished. Seriously, I am in awe of his determination.

In moments like this today, I have to remind myself that he was fifteen months old before he was able to sit, and even then that was with a whole lot cushioning around him in case he toppled (which he did a lot). His ability to establish a regular four-point position to crawl on his hands and knees didn't come until he was over 2.

And now?

Now I see this charming, funny, amazing kid who knows all of his letter sounds and is starting to string them together to make words. (OMG when he realized he read a real word it was the best look ever on his face. He was amazed!)

He is sitting criss-cross applesauce style in textbook fashion. For those of you who don't know of such things, this is a pretty big deal.

We're just a few days away from the start of Kinder. I can't really wrap my mind around how this milestone will change life as we know it right now. Yet even with my anxiousness, I am excited for them. I have no doubt that they are going to love learning and playing. I am fairly confident they are going to love school. Both of them will. I hope so, at least.

But there are moments when I get overwhelmed with the worry that the world won't see the fantastic kid(s) I see. The fear of sending him(them) out into the cold, hard world almost takes my breath away.

What if he isn't pushed or given high expectations or asked to perform to the best of his abilities?

What if they can't see past the walker and motor issues?

Worse yet, what if he internalizes other people's prejudgment and discrimination and allows them to extinguish his light?

It would kill me to see him hurt like that.

Because this boy?

He has a sparkle that lights up the room.

He has a laugh that will make you smile.

It's my job to make sure he stays that way.

~~~

Make me feel better and tell me you were worried about your kids starting Kinder, too, please. Then I won't feel like such a helicopter parent freak. Ahem.

Friday Night Leftovers

On Sunday we headed out to Disneyland with the boys. I have to say that it went so much better than I anticipated. We met several characters and watched parades (which was hard last time because everything was so loud). We even ventured on quite a few rides! The boys were pretty well behaved the entire time, despite staying up late, getting up early, and not really napping. I couldn't have asked for much more than what we got, it was that nice.

I did a few posts over on the boys' blog here and here if you'd like to see pictures.

~~~

When we got home and I had yet to see any information from the boys' school, I called to see when we'd get something. Come to find out, the boys had been registered for first grade rather than kinder because of their birthdate. (They made the cut-off for kinder last year by four days. I held them out another year any way.) They also were not in the same class like we were told would happen.

Um, hello? Why would I have filled out KINDER registration forms if I wanted them placed in first grade?

A few phone calls later and everything was cleared up, but still. It doesn't instill confidence when that kind of thing happens.

And WTF??? about every single thing we try to do becoming an issue? Come on, universe, this is ridiculous!

Anyway, Tuesday is a meet and greet with their teacher. They start school on Wednesday. I started hyperventilating yesterday. It's all good.

~~~

Ja.son asked me what would happen if someone brought a knife to school and cut his leg in half.*

OMFG! There is never anything on the television other than Nick Jr. or Disney Jr. while they are awake. I don't watch the news until 11 pm. Frankly, the boys are as sheltered from violence as much as I can possibly make them. I have no idea where that kind of comment could have come from, but it rattled me.

I don't know if maybe this is some kind of response to the recent walking and standing (20 seconds so far and counting!) that he's doing, or if he really did hear something somewhere and internalized the fear. Maybe it's a combination of both. It makes me sad, though, that he has that kind of thought floating around in that brain of his no matter what the reason behind it.

*I told him that he did not have to worry about that kind of thing happening. He will be very safe at school. He then went on to ask what would happen if he fell down at recess. Sigh.

~~~

On Wednesday I read in the newspaper that the Ea.ster Se.als pool at which the boys get their therapy is going to close. Apparently it would be costly to make repairs to the 40 year old pool, so they decided they'll close it.

Today. They closed the pool today. The employees (and therapists) were told the pool was closing four days ago. So...yeah. It looks like we won't be doing swimming therapy for a while. Bummer.

Universe, please see the above WTF item. Sigh.

~~~

I start school on the 26th.

What happened to summer?

It went by too fast!

~~~

Stop by Danifred's for more Leftovers.

Mostly Wordless Wednesday - Makes My Heart Sing

He's been practicing, which is definitely not something he wanted to do before now.

He was always so afraid.

Lately, though, he's changed. He wants to practice.

And when he does, it makes my heart almost explode from my chest in happiness.

My eyes instantly flood with tears.

I bet you can totally understand why when you see for yourself. :)



It makes my heart sing! I'm am so proud of him!!!

I Swear This Kind of Crap Always Happens to Me

Thursday started wonderfully, with even the boys cooperating for the most part (they slept in!), for 4 and a half hours. From about 12:30 forward, the day slowly and surely started spiraling out of control.

 

That's when I got a call from a nurse coordinator from our insurance company asking if I had any questions or needed any help managing my prenatal care. When I told her I miscarried in May, she said she was sorry, and she'd update my files. She added, "Have a nice day!" before she hung up.

 

There's nothing like a little sucker punch to the gut to make the day cheery, right? Apparently the universe didn't get the message that it was my day off from crap. Sigh.

Then, to add more fun, I started my period on CD17. Cue freaking out about what this all means about my fertility because oh my god this has never happened before and I'm so old and how can this possibly be okay? (TMI - Lest you think that this might be a good sign or something, we're not talking about a little well timed spotting to indicate wanted things like implantation. Oh no. We're talking about a heavy bleeding episode that was at least equal to if not more bleeding than my usual af.)

I made it through the rest of the day. It clearly wasn't the best days I'd had, but I tried to salvage as much of the "day off" mentality as I could. As I was getting ready for bed, I went to grab my toothbrush in the holder and found a spider sitting on my toothbrush. The stupid thing had started webbing from the brush to the holder. (Yes, I had used my toothbrush that morning!) I swear the sucker was shaking his legs in defiance while I stared at it in disbelief and rapidly building horror.

I lost my shit.

I do not do spiders. By that I mean I really don't do spiders.

I ran to get Is.aac to make him destroy my bathroom as there was no way in hell I was going back in there the spider. Upon inspecting the one spider (he did not agree that it was shaking its legs), he found ANOTHER SPIDER right NEXT to my toothbrush. I am so glad I had missed the leg shaker's little friend. Seriously. I would never be able to brush my teeth, much less pee, in that bathroom again had I seen it.

My shit was lost again. Thinking about it still makes me shudder.

Needless to say, I did not brush my teeth that night. I am now the proud owner of a band spanking new toothbrush located in the other bathroom.

It was the ultimate bad day trifecta.

This kind of crap always happens to me.

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.

The Boys' Appointment in a Nut Shell

Today was one really long day at Shriner's. In fact, we were gone from the house a total of twelve hours. We are all wiped. I feel like it was a really productive day (with some good and bad in the mix), which hasn't happened in a long time. Is.aac and I also really like the doctor we saw today. She was knowledgeable and actually talked to us about our insights and goals for the appointment.

The good:

Both boys were x-rayed and assessed. We also received two different assistant devices right there on the spot. It is so nice to have that over and done without having to wrestle with insurance/scheduling. I have to say that this kind of ease when performing necessary scans and orthotics supplies is exactly how the medical world should work.

Ja.son is doing everything he needs to be doing. His AFO's are good. His walker is good. His x-rays looked great. For now, we need to continue his stretching and keep on keeping on. Excellent! He goes back in 6 months for follow-up.

The bad:

Sh.awn was sent on his merry way with both knee immobilizer braces (They do just what you'd think--keep you from bending your knees. Doesn't that sound like fun?) and a hip pillow for sleep (I can already tell you the pillow this isn't going to fly).

We saw PT and were given some targeted exercises to do with him three to four times a day every day.

He'll also likely need Botox injections to relax a few key muscles in his legs. (That would be done at our local orthopedist as Shriner's doesn't do Botox any more.)

The ugly:

Sh.awn's x-rays did not look as good as we had hoped, and has been diagnosed with bilateral hip dysplasia. My understanding of it (without me having done any research, so keep that in mind) is that Sh.awn's hip joint is approximately 30% out of normal alignment. (In other words, his joint is only 50% in the socket, when normal would be 80% or more in the socket.) This could be the way he's been for quite some time, which is what I believe because nothing significant has changed in his flexibility/movement, or it could be something that is rapidly changing which would mean we would likely need to surgically intervene.

So what does that mean? Well, if at any time his joint falls to 35% (or below) in the socket, surgery would be necessary soon. If not treated, the hip could become dislocated resulting in pain and arthritis. It is also harder to correct should the hip joint dislocate.

If it stays where it's at, there is still a strong possibility of surgery sometime between 8-10 years old. (There are differing theories on this but the doctor we saw believed it is more beneficial to be proactive and treat before dislocation is eminent.) The part that freaks me the fuck out, though, is that the recovery period is very extensive--it could take up to a YEAR to make it back to baseline in mobility.

A year. Just typing that makes my heart hurt.

We are going to try a couple of different stretches and the torture devices braces/pillow to see if we can correct (not likely) or stave off surgery for a long time to come (if ever). We go back in three months for Sh.awn to get reassessed and have more x-rays taken for comparison. We'll know more about whether this is a rapid decline or a slower decline then.

~~~

There is also the whole insurance thing to figure out as well. I tried to get authorizations for Shriner's, but my insurance company would only refer us to the Children's Hospital. Shriner's knew that going in to the appointment. I was told they'd still try to bill our insurance, but they'd absorb the cost should our insurance refuse to pay. (We are all assuming they won't because they didn't "authorize" us to go, but they're trying anyway.)

Sh.awn has an appointment for follow-up in November. Ja.son's follow-up is set for January. So the intent to continue with Shriner's is there. But, I'm not yet sure how it will work should we continue to go back to Shriner's as far as insurance goes. That's a discussion for another day, I decided. My brain was fried and the boys were fried; after ten hours, it was time to leave.

Now I'm off to go eat chocolate--Reece's minis to be exact.

Weekend Leftovers

Is.aac and I had a wonderful time this weekend. My mom graciously took all three boys for 24 hours. During that time, we went to dinner, we took a long leisurely drive along the coast, I took a long, uninterrupted shower (glorious!), we slept in late, and we went out to lunch. It was so nice.

~~~

Friday was an incredibly frustrating day dealing with medical facilities. I was literally on the phone with various people for hours. It was awful.

It didn't help that Jack was busy doing shit like this. Trust me when I say that that was only a small part of the mischief making he performed that day. Sigh.

Anyway, the big drama was over getting MRIs of the boys for their neurosurgery follow-up. Their neurosurgeon had requested the scans be done at the children's hospital where he is affiliated, but the boys were labeled "stable" and therefor expected to get the scans at the local preferred radiology provider. First the radiologist balked because the boys are 5. It is imperative that they are absolutely still...blah, blah, blah. Then he realized they have shunts. I had to call the neurosurgeon's office three times to confirm the type of shunts the boys have only for the damn radiologist tell me that he wanted manufacturer confirmation that the boys' shunts are safe for MRIs. They are. I knew that. I told him that repeatedly. Then I had to call the children's hospital radiology department to see if they'd give us the scan sequence the neurosurgeon wanted because the local radiologist was going to do a thirty minute, unsadated study because that's all he knew how to do. Um, no. That is not acceptable. The scans should be 2-5 minutes max.

Ultimately, I called our medical group and told them what a problem it has been trying to get these scans scheduled, so they told me to have the referring doctor resubmit the authorization for the children's hospital again and state the referred provider was reluctant to perform the scans. That has had a snowball affect and has meant that the neurosurgery appointment we have for later this week won't happen. So, I after all that wasted time, there is still nothing to show for it I have to start the whole damn process of getting approval for these scans (fingers crossed) and the doctor appointment all over again. I do know the earliest appointment for the doctor isn't until mid-September. Lovely.

~~~

Tomorrow is a big appointment for the boys at Shriner's hospital. We're going in for a complete orthopedic examination/evaluation/second opinion. I just want to make sure we are doing everything we can be doing to help the boys progress as much as possible.

As I am with all of their appointments, I am feeling rather anxious about the whole thing. (The toilet and I are on a first name basis today. Sigh)

I'd appreciate any good vibes you can send our way.

~~~

TWCable, you and CBS better figure yourselves out and give me back my television before Under the Dome is on. I suspect that if I miss a day, I'll never understand what is going on in that show. So don't make me miss it. Just saying.

P.S. I am already over the random shit you're playing as a replacement, too. I hate it when I read on the guide that something is supposed to be on only to flip over there and see some strange western movie. It is not the same, nor does it make me happy.

~~~

We're thinking of adding a quick trip to Disney before school starts. I hope we can swing it. My class size stipend (extra money I get for having extra students in my class during the school year) gave us some unexpected money to play with this summer. Yeah!

~~~

Stop by Danifred's for more Leftovers. :)

Eleven

Today is our 11th wedding anniversary. It's crazy to think about, even though we've been together for over 24 years now. (Now that makes me feel old!)

Homecoming - fall '89

 We started dating the summer before our senior year. 

Disneyland - Grad Night '90

We were so young!

Sometime in '91 or '92

We grew up together, the two of us.

At a friend's wedding in 1995

We experienced big life moments together.

Graduations...

I'm a hottie here. :) - 1996

 

Weddings...(posted about it here)

 

August 2, 2002

We had just been declared man and wife - happy much?

Babies...

 

 

We've grown into the people we are today together. The ups, downs, happiness, and sadness...we've been through it all.  It wasn't always a smooth transition from one event to another, but we made it through the tough times and are stronger for it.

Happy Anniversary, Is.aac. I hope you always know how much you mean to me. I truly do love you with all of my heart!

Yesterday

The idea of a chair has been floating around in the background for some time now, but I've always resisted taking that step. It isn't something that is absolutely necessary exactly, but it is something that might make him feel more independent while he is at school or out and about town. My fear, though, has always been that he'd get stuck in a chair and never get out. I worry that he might think rolling around is a whole heck of a lot easier that walking around, and he'd just give up on walking all together.

So when the idea of a wheelchair was brought up, I'd push it away. Let's get him as firmly established with walker as we can before school starts. Let's build his stamina so he can walk longer distances before tiring. (He can walk, but he tires easily.)

So yesterday, I felt a bit blindsided about testing the chair. "Hey, we have a chair here for a demonstration we're doing on Saturday. Why don't we just try Sh.awn in it today?" For the life of me, I couldn't think of a way to say no at that moment, because really, there was no reason to say no except that I'm uncomfortable with the whole idea.

But it isn't about me, it's about him.

My feelings really aren't what matters here. It's about him and his needs. I agreed to let him try it.

Seeing him yesterday, in the wheelchair, hit me harder than I expected. I was not prepared (again...ever?) for my reaction when I saw him in it. It took everything in my being not to burst into tears. My mind raced with "Oh shit, oh shit, oh shit," while I desperately tried to reel in my emotions.

It's about him, I reminded myself again.

After a deep breath, I allowed myself one text to Is.aac that included the picture I posted here and a frowny face. Then, I squashed the impulse to crumple into a weeping mess, put on my game face, and did my best to encourage him as he maneuvered around the room.

He could have cared less one way or the other. He was fine in the chair. He was fine in his walker. He was just plain fine. He acted as if the entire event was no big deal.

Because for him, it was no big deal. All he wanted was to get to the next toy in the room; he couldn't have cared less about how he got there.

I was am the one with the hang-ups. As much as I try to be upbeat and positive about everything when it comes to the boys, I sometimes fail miserably. Yesterday was one of those days.

I can't say that I am in love with the idea of getting him a wheelchair. I can't say if it will even come to be that he gets one.

All I know is we'll do what needs to be done for him because he is the only one that matters in this equation.