Well My Week Was Crap

I want to tell you....

I/we have not had a week as crappy as this in a long time. The "when it rains, it pours" kind.

I should be grateful things haven't been so frustrating in awhile though, hu?

OK, one thankful list item checked off!

And I suppose I should be grateful no one died.

Two thankful list items. Check, check!

Actually, that's not entirely true. Sure, everyone near and dear to me is still breathing, but my friend's mom did pass away on Tuesday. Which totally sucks for her and I care about her so I feel bad.

Now that I think about it, something did die: my husband's fistula.

A fistula used for hemodialysis is a direct connection of an artery to a vein. Once the fistula is created it is a natural part of the body. This is the preferred type of access because once the fistula properly matures and gets bigger and stronger; it provides an access with good blood flow that can last for decades.

Mark has had a badass, perfectly flowing fistula for 12 years. He has had no problems with it until now. It is the one thing that hasn't gone wrong for him in the last 12 years of being on dialysis.

Adding that to the thankful list! That's three things now, right?

But literally overnight, it shut down. Clots, calcification, what-have-you. Done.

This happened Wednesday morning after he already had a truncated dialysis treatment on Monday, coming off his 2-day stretch over the weekend. Monday's treatment was interrupted by tummy trouble.

Thankfully, he was able to get in for a make-up treatment on Tuesday, otherwise he would have had to be admitted to the hospital come Wednesday and still no dialysis.

Fourth thing to be thankful for! I guess.

Everyone scrambles and Mark gets in for a "fistulagram" Wednesday afternoon. This is similar to an angiogram and angioplasty they can do for the heart. But no dice. It's gonna need surgery.

So the outpatient surgery folks put a Quinton catheter into Mark's chest and schedule operation fistula-fix for the next morning.

I was thankful they went ahead with the catheter, kicked him out of the hospital without much fuss and his dialysis clinic was able to get him in for a 3-hour treatment that night.

Three more things to be grateful for! We're up to SEVEN now!

So you know how you're not supposed to eat or drink anything after midnight before a surgery? Well, that can be kinda tricky for a diabetic. In the interest of preventing a low blood sugar, Mark had a snack before bed and didn't give himself any extra insulin.

Turns out, his blood sugar decided to go high. This is apparently a good reason NOT to proceed with surgery (something I did not know). Mark took some insulin, but his sugar wasn't coming down quickly enough and we missed the window of opportunity with the surgeon. Surgery cancelled. Go home. Until next week.

The day before they practically threw us out of the hospital. Now, notsomuch.

Do you have any idea how thoroughly frustrating waiting for NOTHING to happen is? I think my dad wanted to punch somebody.

I whined for people to entertain me on Twitter. And they did!

#8 thing to be thankful for.

When we finally got home I checked the mail and found three letters from a certain government entity that has to do with providing benefits to the elderly and disabled. One of which was incomplete. It said there was something they needed to tell me, but then didn't. Weird. The other two said they are cutting our children's portions in HALF.

The hell you say??

Nothing, nothing, absolutely nothing has changed with any of this in YEARS. I couldn't even remember the phone number to call them because I haven't had to in so long. My and Mark's disabilities are so etched in stone at this point there should be no questions.

Yet some bureaucratic asshat has decided to screw with our stuff! And I had to sit on hold for an HOUR trying to get some information.

Which, you know, is exactly what I wanted to do after spending a completely pointless several hours at the hospital with my husband who is having thing after thing after thing go wrong for him this week, thus the same things are going wrong for me as well only in a different way.

*Heavy fucking sigh.

Oh, did I mention that my son's school bus came a couple minutes early Thursday morning so he missed it and I had to ask my sick friend to take him for me?

AND, I think my daughter now has the strep throat her brother has had.

This has been my week, folks.

I'm all sorts of pissy, but right in the middle of everything I got emotional about the wonderful people in my life. I posted on Facebook:

I am so very grateful for the amazing support system we have! It is so awesome to know that there are people I can call whenever I might need some help. Today Jessica took us to the hospital, my dad came from work and Carin picked us up. Tomorrow morning my dad will take Mark back for the surgery. Every single thing done for our family is seen and appreciated. <3

Nine things on the thankful list!

Of course all of this is making me feel so anxious and insecure about my upcoming birthday trip with my BFF. What if things continue on this track and I shouldn't leave? What if the bureaucratic crap means I can't afford it? What if, what if , what if....

I need a 10th thing to be grateful for....oh I know! K-cup packs for five bucks! Yup, that'll do.

I have hated this week, and I'm not sure next week will be any better since Mark still has to have that surgery. But I know my sense of humor and ability to be thankful for even the smallest things will get me through.

And that's what I really wanted to tell you.

A Letter to Those in Charge of My Daughter's Education

Dear Principal and Counselor at My Daughter's School,

I am writing today to tell you how very disappointed my husband and I were in the meeting we had with you and some of her teachers last month.

Since the meeting, I have been trying to get over how it felt and what we took away from it, but I can't. I keep coming back to it and what a huge waste of time it was. My husband tried to say something during the meeting, but I quieted him because I didn't want to undermine you all in front of our daughter.

But we can't continue to be quiet.

We asked all of you to come together with us to help our daughter because she is struggling at school. You took the opportunity to tell us how to parent. Principal, you pointed your finger at us and said we were wrong. It was condescending and completely unhelpful.

At the risk of sounding defensive, I must say that my husband and I are good parents. We do everything in the world that we can for our children. We have tried and tried and tried to give Camryn all the tools she  needs to succeed at school. I asked for the meeting because I am worried about her ability to succeed there. You all decided that the problems were only hers and ours.

Well I disagree. You are passing the buck. You all are not willing to take any responsibility for failing my daughter. Both literally and figuratively. From the moment Camryn stepped through those doors in 6th grade, you have not been willing to lift one finger to help her.

Except to have a couple of meetings which accomplished nothing. They were just for show, to make it look like you were putting in some kind of effort.

After school homework help? Great. Yes, that's helpful, but Camryn is STILL shy at school. She still isn't comfortable asking for help. She is going (when it's not cancelled for no reason), but this doesn't help her with feeling overwhelmed by being behind and continuing to have more and more piled on her.

I am not saying she isn't at all responsible for her own school work. She is 13 and in 8th grade and of course she has to take some responsibility for these things.

However, she has ADHD and maybe you don't know this, but kids with ADHD mature slower than their peers. Camryn is not like other kids! I feel that you do not get that at all. Her brain works differently. She has a LEARNING DISABILITY. Yet that doesn't even seem to register for you.

All any of you have ever said to us the entire time she's been at your school is that she has to do this and we has her parents need to do that. WE DO all the things you suggest. She TRIES.

What are YOU doing?

You all are the college educated, trained professionals. YOU are supposed to know how to help kids learn and succeed in school. My husband and I are not trained teachers.

I was talking with Camryn last night about some school things. You want to know what she told me? She is having a hard time not feeling like just giving up.

My heart breaks for her over this. She is a good girl who wants to do well. You all tell me this! No teacher has ever had anything but great things to say about having her in their class.

Yet she's just on her own there. She gets no support from you. No one ever pulls her aside and asks if she needs anything, if she understands what's expected of her, if she feels good about things. She doesn't feel like any of you give a damn about her.

Yes, yes, I know she's not the only student. I know she's not the only kid with a learning disability. But, honestly, that's not my problem. You all should have some game plan on how to deal with these things.

There is something else I feel you should know. We have some unique family circumstances that might play a factor in the way Camryn is. Her dad and I are both legally disabled. I have bad eyes and her dad has chronic illness. He is a type 1 diabetic who is on dialysis and has heart problems. He nearly died in March of 2012.

We know these things weigh on Camryn a bit and cause her some anxiety. We got her into counseling over the summer. So she has ADHD and some family stress she is carrying around. We are doing everything we can to help her learn and grow and end up well-adjusted. But we NEED your help too!

Perhaps a 504 plan isn't good enough. Maybe it should be bumped up to an IEP. Counselor, wouldn't that be your department?

The simple fact is, my child is currently failing most of her classes. NO ONE should want that and EVERYONE should want to fix it. Do you want my daughter to fail? Shouldn't you be intervening? Doesn't it reflect poorly on you as educators when students fail?

ISN'T IT YOUR JOB TO TEACH MY CHILD??

Please stop being apathetic about her. Please step up and do your jobs. I'm begging you. What is happening here is not OK. We are angry, and we are done being polite.

Unhappy, but sincere,
Camryn's personal advocate
aka MOM

**I actually sent a version of this to my daughter's principal and guidance counselor (what guidance?), and CC'd the school psychologist. I wasn't kidding when I said I'm done pussy-footing around these issues. I stand here right now, ready and willing to rock the boat. I have read too many other blog posts written by parents of children with much bigger needs than my daughter's, who have found the exceptional educators their children need to succeed, even in public school. I hear in their words the immense relief they feel knowing that their child's teachers actually care on some level. I desperately want to feel that too! And my daughter deserves better.

5. Talk about a problem you tackled this week.

Being Different Sucks

I really don't want to sound like a big whiner, but sometimes.....being different just sucks.

Like right now. The process of finding a place that can manage to make the sort of eyeglass lenses I need as a visually impaired person.

My prescription is too strong and complicated for your average optical store. I knew this before I began. Yet I am surprised at just how difficult this is turning out to be.

It doesn't feel good to be handed off from one eye care professional to another. My ophthalmologist didn't think he could do my refraction well, so he sent me to an optometrist he thought could. The optometrist couldn't figure out my reading lens, so off to a "low vision clinic" I went. The low vision clinic was able to figure out my entire prescription, but they themselves do not have a lab for making me a pair of glasses.

Which I think is lame and pretty half-assed of them, but whatever.

I went to the optical department of my insurance carrier where they told me their lab could pull it off, I picked out frames and the glasses were ordered. I was so excited, expecting to have new, fresh, pretty glasses on my face by Mother's Day.

Then I got a call that completely deflated me. Turns out that lab couldn't make it work and my order had to be cancelled.

I cried.

I have been wearing the same glasses for over 10 years and now that I'm finally trying to make this happen for myself, I feel like I am being jerked around at every turn. I can't understand why, when 10 years ago I was able to get the glasses I needed, it's so damn difficult today. I would have thought I had built up this big annoying process in my head, only to find out that it's not that big of a deal after all.

But I was right. I was right that this was not going to be fun and that I would have to jump through a whole bunch of hoops.

I am not happy to be right in this case. I wish I were wrong. I think I should be wrong. Because TEN YEARS! Shouldn't there have been many advances in eyeglass technology by now? Shouldn't it be more commonplace for someone with low vision to need glasses? And shouldn't optical companies want to accommodate that need?

And after 20 years of being visually impaired, shouldn't I not feel like such a freak anymore?

I want to tap into my zen attitude of well, maybe those weren't actually the right frames, I will find the right place and the right frames and lenses and it will be FINE. Then there's that old adage, "Things worth having never come easy", or some shit like that.

You might be thinking, jeez, it's just a pair of glasses. But what you don't understand is, my ability to see just half as well as you is what's on the line here. With corrective lenses I am still visually impaired. I cannot be corrected back to 20/20, no matter what.

It's about my comfort level as my current glasses pinch my nose and dig into my right ear. It's about maybe being able to feel a little bit prettier.

This matters to me. It's not trivial.

The very best thing said to me as I've expressed some of my frustration was:

All the good people are freaks. Let your freak flag fly and chin up! All will work out in the end.

So alright, I will try not to be bitter about this. I will try to let it roll off my back and look to the end result.*

*But for the record, I'm stomping my foot right now!


Linked up with Pour Your Heart Out.

NaBloPo-effing-Mo

10 Reasons NaBloPoMo is Pissing Me Off*

1. For me, it's making me post things that I'm not completely satisfied with, just because I have to post something.

2. That's not supposed to be the point, but I just can't put as much effort into 30 posts in 30 days as I otherwise would.

3. Therefor, I am not as proud of my posts right now.

4. I think perhaps NaBloPoMo isn't actually for someone like me, who has something of a regular posting rhythm.

4. It is more for those who are inconsistent bloggers and need to push themselves to post more often.

5. Sure, I take lots of pictures with my phone, but I can't imagine anyone needs to see any more of them than I already share.

6. And sure, I'm a little crafty, and I cook a little, but this is not a craft or cooking blog, so posting things like that should not dominate.

7. Erica at Yeah Write has been so supportive, even inviting those on the NaBloPoMo grid to enter posts on the challenge grid. But, see #3.

8. I could have written about choosing baby names for today's Listicle, but....meh. Do you really want to know how we arrived at our children's names? Most of you have never even asked what AJ stands for. If it weren't for NaBloPoMo I probably just wouldn't have posted today. But because I must bow down to the National Blog Posting Month gods, here I am butchering a Listicle....

9.  ....complaining about NaBloPoMo. Because I chose to do it and I'm too stubborn not to finish, but I'm not really enjoying it!

10. Will someone PLEASE make sure I don't sign-up for it next year?? I mean, seriously, reach through the computer screen and slap me if I even mention it!

I bet a bunch of bloggers are really diggin' it. I honestly thought I would too, because I did last year. I have learned a thing or two along the way, which is always a good thing. But....I think I'm at a point with blogging where I just don't need any challenges.....

You know what it is? Blogging is not supposed to be challenging. It is supposed to be the one thing in my life that is pretty easy. I feel like writing all the time. But if I don't feel like it, I don't have to. Right now though, NaBloPoMo is saying I have to. It's like it thinks it's the boss of me.

Well screw you, NaBloPoMo! I will finish out the week and then NEVER AGAIN.


*Could be that I'm just in a bad mood, frustrated, PMSing or fed up with something else entirely and choosing to take it out on NaBloPoMo**.

**Whatever.

Angry Jennifer!

Things that make me angry include:

• Mother Nature jerking us around - all I want is 2 little months of sun. Why is that so much to ask?
• Whiny children - why can't you just speak in a normal voice?
• Spills - the child spills something, but it's mom who has to clean it up.
• Pimples - especially at 38 years old. This is making me angrier and angrier. I mean, my face is behaving better lately, but who knows when it will freak out again, and don't even get me started on body acne!
• Completely inconsiderate people who won't give their seat to a pregnant woman.
• Parents who stubbornly refuse to leave a public place with their screaming child.
• When my children won't acknowledge that I've just spoken to them.
• Lying (except for little white lies; that's usually just being nice)
• When things don't work the way they're supposed to.
• Entertainers who completely mess up their lives and waste their talents.
• When a TV show I love is canceled without a decent ending.
• Looking forward to eating something only to discover that someone else got to it first.
• The phrase "I can't".
• Anything negative (intolerance, war) in the name of God.
• When a restaurant takes my favorite dish off their menu.
• People who complain all the time.
• Those who think they're better.

Inspired by Mama Kat's Writer's Workshop.
Edited and linked up for:

Stasha, the #1 sound I hate the most is
the sound of my phone ringing in the middle of the night
when Mark is in the hospital.

What makes you angry?

The Mechanics of a Kid's Bedroom

So I have two children. A girl who is 11 1/2 and a boy who is 6. I love Camryn and AJ very much.

But they are kids and they suck at keeping their rooms clean.

This is no big shock. Only exceptional children like I was are capable of, or give a damn about, having a clean bedroom.

But I am inherently a hopeful person. Especially as my kids get older, I have the hope that this indifference to cleanliness will magically morph into, at the very least, a healthy respect for their own things and their own space.

And of course I MAKE them clean their rooms when I can't stand it anymore. In fact, that's part of what has led to this post.

Cami decided she wanted to rearrange her room. She no longer wanted her bed all the way up against a wall. a sure sign of some maturity, I thought. AJ had actually said something about wanting his bed elsewhere at some point before, but I dismissed him, saying the space his bed was in was exactly where it was supposed to be and it wouldn't fit right anywhere else.

I take my kids seriously only when they won't let go of an idea. If they keep asking, keep talking about it, then I know I should pay attention.

When we moved into our house, we painted two walls in each of their rooms and got them all set up, like so:

AJ's room

Camryn's room - we did get her some curtains too

Both beds are up against walls. Most kids like this arrangement because the wall offers a sense of security. At least they won't fall out that side! Also, it maximizes floor space for playing.

But for Cami, under and behind her bed have always been great places to hide crap, to shove things when we ask her to clean her room. It's so aggravating! For AJ, who loves to toss things around, many things have fallen down the side of his bed.

Back to the rearrangement. We had the kids clean their rooms and made an agreement that if they kept them clean all week, we'd rearrange on Sunday, when Mark had the day off. Much to our surprise, they held up their end of the bargain. When my dad called and offered to take them to see a movie, Mark and I decided to surprise them and move their furniture while they were gone.

I don't know why I was so shocked by what we discovered when we moved their beds, but I was. SO MUCH SHIT!

Not literally feces. My kids aren't that gross. But a massive amount of odd little things. Some not so little, actually. Like under Camryn's bed, she had pajamas and towels shoved under there.

I was remiss in not stopping to take pictures of all the crap, but I just wanted it GONE.

Legos, pens, pencils, coins, hair things, pajamas, stuffed animals, pillows, blankets, little army men and TRASH. Why oh WHY can't my children put trash in the can??

Ignorance is bliss, I tell you!

So this is what their rooms look like now:

AJ's - not right up against the wall because of the heater vent under the window
(sorry about the lack of picture quality)

Bed no longer in the corner

Nice big gap between bed and wall

I took more pictures of Cami's room and wanted to specifically point out the gap between the bed and wall because now she cannot shove shit and hide it. I am now completely convinced that parents should NOT put beds in corners up against walls. It's like inviting the child to hide stuff in order to create the illusion of a clean bedroom.

AJ knew he had dropped his Nintendo DS stylus down beside Cami's bed, but he didn't want to go searching for it because it was too scary down there!

Man, I wish I had gotten a picture of the heap of crap she had shoved there! Have I talked about it enough to make an appropriately disturbing image in your head?

Please, I implore you, learn from my mistakes:

• DON'T arrange beds up against walls.
• DO clean under and around beds more often.
• DON'T take a child's word that they didn't shove crap somewhere.
• DO accept that they do not care and probably never will, but it's your job to MAKE THEM!

Now, if I could only get them to hang up their wet towels without me screaming at them about it...

6 Months

So......today it has been 6 months since Mark's bypass surgery.

The week + leading up to today was lame.  Mark got a cold, then I got it, then the kids got food poisoning and then I watched a sad movie.  I still haven't gotten all the phlegm out of my system.  I haven't had much contact with friends, but Mark did go out.  Lastly, Mark and I had a really heavy conversation.  Why so much emotion and frustration has to rain down all at once I'll never know.

The heavy conversation was last Sunday. Mark had been sick for a couple days and hadn't gotten any sleep the night before so he was vulnerable to actually opening up.  I kind of got on him about his over abundance of grumpiness.  I'm not talking about just being grumpy while sick, because of course that's understandable, but since before that.  It seemed to me that he had been barking at the kids for everything; didn't seem like they could do anything right for him.  And I know he doesn't want to be that kind of dad.  He was also picking little fights with me so I finally said it was really bothering me.

He broke down and talked about his frustrations with his legs still hurting a lot, and that his chest still hurts when he coughs or sneezes.  He told me that he's worried he could lose his job because he's not been able to do all the same things he did before his surgery, and that he needs his job to feel good about himself.  He's really been feeling his mortality since learning that he coded after the surgery and told me how scared he is of the possibility of dying while the kids are still young and what that would do to them.  He also worries about what people think of him.  He doesn't want anyone to think he doesn't try or that he'd ever give up.  Whoa.  I said it was heavy, right?

Of course all of this breaks my heart, but I think I managed to say the right things.  I told him that Depot has been so good to him and that they seem to genuinely like and care for him so I can't see them firing him at this point.  Then I said that of course it would be awful if he died while the kids are still growing up, but that they would still have me and he should know I would take very good care of them.  I told him that we would never forget him, that there would be no erasing of him by any means.  We would have all the pictures and keep some of his things, although I joked that I would definitely get rid of most of his crap!  I wouldn't just roll him up in a rug and throw him in a ditch like he likes to joke about though.  I reassured him that all anyone can ever expect of someone is that they do their best each day, and everyone knows he does that.  So he should not think that anyone thinks anything negative about him; on the contrary, people admire him and see how much of a trooper and fighter he is.

It was hard to know if Mark was really hearing me though because he wouldn't look at me.  He also didn't want me to try to hug him.  I guess he was feeling shame or embarrassment?  I just can't imagine why, except for that stupid male ego thing he's got going on.  I told him he needs to talk about this stuff with me from time to time, get it off his chest, rather than hold it in and just be grumpy at us.  He said he doesn't see how talking helps....but then when we were done, he totally acted like he was in a much better mood and started wanting to cook.  Wanting to cook something is always a sign that Mark is in a good mood!

For me, I am for sure gripped with the fear that we will lose Mark too soon.  I always have been a little (since he lost his transplant), but so much more since last September.  I worry that I won't know how to be happy without him in my life, and of course the impact it would have on the kids.  Regardless of all the crud he deals with, Mark is the life of our family.  He is boisterous and funny and social.  Things I am not.  He plays video games with the kids and he's a better cook.  He almost always has answers to the kids' curious questions because he watches so much educational TV.  I have to Google everything.  He gets the kids in ways I do not because he can remember so much of his own childhood while I don't remember much of mine.  And then there's the little fact that Mark is my love, my partner in crime, and who ever wants to live without that?

Ever since the surgery I have been struggling to not let my fears take over, to maintain my positive attitude and just live in the now.  Because right now is pretty good! We have each other.  We have our great little house which we love so much, and I still can't believe we live in.  We have 2 healthy, beautiful, great kids whom we are in awe of (in one way or another) every day.  We have great friends, loving family and an ever evolving faith in God.  Mark has his job, a decent car and a great dialysis schedule that has been so good for him.  I have being a Mom and running our household, my cool cat, a few special friends, obsessions with British royalty and knitting (there is just so much to learn about both!) and an open heart and mind.  All of our necessities are met and much of our indulgences too.  Sure, there's always something to point to that you still want, but I think there forever will be.  So despite how heavy (there's that word again) our burdens sometimes feel, and let's face, they are heavy (and again) burdens, we are fully aware that some have it much worse.  I also try to remind myself that even if the worst did happen, that we wouldn't be the only people who ever lost a loved one and had to deal with the aftermath of that loss. People do it every day. And they survive it.

So no pity party going on here; it's simply the truth, my truth.  I'm just trying to express that certain aspects of life really are hard, and unfortunate, frustrating and downright unfair, and there is a process of processing it all.  As I often say, and will continue to say, balance is my friend!

So where am I now that 6 months has passed since my husband had a heart attack, double bypass, sepsis and had to be resuscitated 3 times?  I guess I'm still traumatized and still processing.  Is that normal or OK?  Should I be over it by now?  I don't know and I really don't give a damn!  It is what it is.  I am a strong, sometimes insecure, thoughtful, caring and loving, supportive, loyal, stubborn, honest, emotional but positive person who thinks hard but leads with her heart and gut.  And I don't apologize for any of it.  I am riding the roller coaster of life and trying very hard not to cover my eyes the whole way.

I read a bunch of great quotes that would be good here, but I think this one sums up the goal simply:

"Turn your wounds into wisdom." ~Oprah Winfrey