Thursday, May 23, 2013

Choosing...



“The problem, simply put, is that we cannot choose everything simultaneously. So we live in danger of becoming paralyzed by indecision, terrified that every choice might be the wrong choice.” ― Elizabeth Gilbert


Here I am again. It's 1:30 in the morning and I can't sleep. My head and stomach are in knots because there is a.n.o.t.h.e.r meeting.

Freaking meetings... Kill me now!

This time it is to come up with a plan for standardized testing. Last month, Justin's 504 wasn't followed during FCAT's. One day his bg wasn't tested at all and the next they allowed him to start testing with a bg of 61.

I spent four weeks asking for someone to get back with me so that we could "find a resolution".
And for four weeks those calls/emails went unanswered.

Until I emailed the county superintendent.

Unfortunately, you could tell by the tone in her voice, the AP was quite "ticked" when she called me. I pray this doesn't set the tone when we meet next week. #nothopeful

I worry that this will be a bashing session, rather than a solution meeting. Because that is exactly what the phone call was. I am not ignorant to the reality that the challenges over the past school year have damaged the lines of communication(if there really were any to begin with). Its been a rough year. Lot's of "that is not our responsibility" and you need to contact so and so... who send you to so and so #2 who then sends you to so and so #3 who ultimately send you back to the original so and so.

I have two choices here... keep him there or move him. Each option is a win/loose situation.

Keeping him there...
I honestly don't think they are ever going to work with me. I've been labeled to the point where they don't even bother to answer an email. All for advocating for my child. Justin has been labeled as well. My confidence in "the system" is gone. Justin is struggling emotionally and it's not worth all this stress on either of us. Can I even survive two more years of this?

However, his sister is there. I don't have to worry about him on the bus because I know she is watching him. I don't have to worry about transportation. He has friends there... kids that he has gone to school with since kindergarten. It's pure bullshit that he should be yanked out of his neighborhood school because they can't get their shit together. He.has.the.right.to.be.there!

If I move him...
I don't know how I am going to get him back and forth. This will be a challenge for the next two years. He will not go to high school with any of the kids at the new school so he will have to start all over socially. This is a big challenge for a shy kid with confidence/emotional struggles(and she begins to cry). I would have to choose a new school and deal with all the worries of making the right choice. Justin and I would have to live with the consequences if I choose wrong.

But, I could start fresh with a new "team" that may be more willing to help him( that is if they haven't been warned about his witch of a mother). A team that may be more compassionate. I would start a new year hopeful. Maybe I could even stop crying and get some sleep. Maybe I could even stop stress eating... MAYBE.

I just don't know what to do. You can not imagine how much this is killing me. I only want what is best for him. I only want him to succeed and be happy. But reality is I am am failing. He is struggling and he is unhappy. He needs a break. WE need a break.








Wednesday, May 15, 2013

Memories... Diabetes Blog Week

Diabetes Blog Week


Today's topic...
Click for the Memories - Wednesday 5/15 Link List
Today we’re going to share our most memorable diabetes day. You can take this anywhere.... your or your loved one's diagnosis, a bad low, a bad high, a big success, any day that you’d like to share. (Thanks to Jasmine of Silver-Lined for this topic suggestion.)


I can remember it so well... Our first "fighting low". You know what I'm talking about; the kind of low that makes them fight you. Makes them refuse to drink. The kind that makes you panic and question if you're capable of going for the Glucagon if it comes to that. 

It went a little something like this...
It was summer. Justin and I were in the school's media center folding and labeling the newsletters so that we could get them mailed out. Other than one other mom, who was helping, we were alone.  To be honest, I really didn't know her that well so I am sure it was a shock when I started screaming and my then 8 year old son for no obvious reason. Not obvious to an "outsider" anyways.

I promise I didn't flip out right away, after all, we were at least 7 or so months in and I had this all under control by then, right? **Wishful denial might be more like it**. 

I can see it in my head. Sitting there folding away, the happy little mommy volunteer, looking at her son getting a little pale. 

"Justin, you okay?"
"Justin"
"JusTin" - a little hint of aggravation forming because this is not funny to me. 
"JUSTIN" - dragging him outside to yell because he's just not listening to me.

And the fighting begins...

An eternity passes as a mom fights her 8 year old son. Pleading with him to drink.

Her mind is spinning with what to do next. Do I have the Glucagon? Do I have the cake gel? Do I have it in me to use it? Have I practiced enough?

She's getting madder. Why? The anger can only be out of pure fear.

"Dear God, Justin, drink the juice"

"PLEASE" 

And just as quick as it started it was over. 

Juice was consumed. 

The Mom's heart was broken and full of guilt for yelling. But what else could she do?

She was terrified.

And she will never forget that feeling for as long as she lives.









Tuesday, May 14, 2013

We, the Undersigned... Diabetes Blog week - day 2

Diabetes Blog Week



Today's topic...
Recently various petitions have been circulating the Diabetes Online Community, so today let’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) - get creative!! What are you trying to change and what have you experienced that makes you want this change? (Thanks to Briley of inDpendence for this topic suggestion.)


IF I were able to petition anything, I would petition the perfect 504 plan. Yeah, an "air tight" 504 plan. It would cover everything from testing to lock downs and everything before, after and in between. It would be a standard plan, based on your child's disability/disabilities. It would be valid no matter where you lived. It would be binding and non negotiable. It would fit everyone... "not like a one size fit all" plan or anything... more like a "we gotcha covered no matter what plan".  And if the school(s) didn't follow it... there would be serious consequences for those involved. 


I think some of these schools need a wake up call. I think some people need a new lesson in humanity and understanding. I am so tired of fighting for reasonable accommodations. Things that SHOULD be a no brainer are a fight ... Wait! The school does not like to use that term, challenge, everything is a challenge. I call Bull Shit!!! I say if you have disabilities, even if they are invisible, you should be able to get the accommodations you need. Tools to help you be successful in spite of the challenges you face. The absolute last thing we should be given is a hard time... we have enough of a hard time... We don't need anyone to give it to us.


Signed,
Crapstix... I think this just turned into a rant :/





Monday, May 13, 2013

Share and Don't Share... Diabetes blog week day 1



Diabetes Blog Week
Today's topic ...

Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one's daily life with diabetes? On the other hand, what do you hope they don't see?  (Thanks to Melissa Lee of Sweetly Voiced for this topic suggestion.)



I think I am going to have to give a big shout out to Justin's endo on this one... we always get more than 15 minutes with him. If we have questions... he stays to answer them. If changes need to be made... he stays to change them. I have never felt rushed or unheard.

He is, however, very serious. As a mom I appreciate that, but I am also a bit scared of him and I can see how that seriousness could hinder an open relationship between him and Justin later on. Will Justin feel comfortable being up front an honest? Or will he play it safe so that he doesn't get the ass chewing of his life?  

Our endo is very quick to tell you that your doing a good job. I have also heard he is pretty straight forward and/or blunt when you're not. Thank goodness I've never been on the receiving end of that!!

Again, as a mom, I kinda appreciate that. I want someone other than me to tell Justin when he needs to get his shit together. But do I really want that? Should I really want that? OR... should I want an endo that is open with no judgement? Fine line, I suppose.

So if I had to say anything, it would be...
I hope that you are "softer" than you appear. I hope that with all that seriousness, comes understanding. I hope that when you chew a chunk of my sons ass, you do it with compassionate concern and I hope you give empathy when he needs it and tough love when its warranted.

Happy Monday!















Saturday, May 11, 2013

4th Annual Diabetes Blog Week...



Monday kicks off the 4th annual Diabetes Blog week, hosted by the awesome Karen over at Bitter~Sweet.

Click on the banner below to get a sneak peek at this weeks topics and to see a list of all the awesome bloggers who will be joining in the fun.

Thank you, Karen, for hosting such a great event :)




On a more personal note, I am sure going to do my best to blog every day, but no promises... its going to be a crazy week for me. I am going to play the role of a single, working, dmama... YIKES! I think I might even have to go grocery shopping too. Double Yikes!!!! Now before you get a funky look on your face... No, I don't do the grocery shopping. I write the list and Anthony pushes the cart around the store.
Listen... we had to divide and conquer when I went back to work and grocery shopping was on the top of my list to delegate... yeah, we'll call it delegating. I hate it and he doesn't mind it. Win-Win and a holla just for fun!!

Anywho, the Mr. is headed to Ohio this week with his family. Note... his entire family who helps me when he is not around. They will ALL be gone. Help(aka Mr. grocery) and backup plan(aka, my "were in a jam can you help" help)... GONE... ALL-OF-THEM.

THEN, as life does, the curve balls were thrown as soon as the purchase button was pushed on Southwest.com. I get an email about a mandatory training that I have to go into the office for. SHIZ! Justin has tutor that night... good thing I have a lead foot. BOTH of my kids have spring concerts... on separate nights. Leighanna has viola lessons etc etc etc... the list goes on really. I don't think I've had to get dressed this much since I started working at home last summer. Crap stix... I hope I have clothes that fit because it's getting a bit to hot to wear sweatpants outside. Then again... I might be lucky to brush my hair this next week so I may not give two shits about what I'm wearing anyways.

I know, I know... all the single mama's out there are going "stop complaining you witch; its only a week". Believe me, I know I shouldn't complain. And I'm not really complaining, per say, just a "I'm dreading this" vent to help clear my mind.

Now I can go start my "to do" lists. I wonder if I can con Anthony into going grocery shopping before he leaves???

Happy Saturday!














Wednesday, May 8, 2013

More than D Mom...

"What do I stand for, what do I stand for,
most nights, I don't know, anymore...
~Some Nights by Fun


More than a DMom, AM I? Some days I don't know. Some days I feel like guilt and worry have taken over all of my being. They've consumed me. They have become my shadow.

After all, its not me that I will hurt if I screw this up. And even though I doubt he would ever place the blame on me, I would surly consume all of it.

I was 31 when Justin was dx'd. At the time I was the 1st VP(in charge of fundraising) for the PTA. I scrapbooked as a hobby and even made a little money doing it. I made all of my teachers gifts, I KNEW when teacher appreciation week was, I stayed on top of things(except maybe the laundry... I was never good at that), I had my shit together. I was lippy and spunky. I loved photography and always had my camera with me.


Today... I'm older than 31. I feel 41! I am still lippy, for sure, but I haven't touched a scrapbook in who knows how long. The only camera I carry is on my phone- in which I carry around by a death grip, ready to look up carb rates and communicate numbers. I have become really good at hiding emotions. I keep a straight face, even when my insides are screaming. I do this for Justin's sake. This burden is not for him to carry right now... he will have plenty of time for that later. I can see the toll this new life has taken on my face. I can see the worry in my eyes when I look in the mirror. I can assure you, as long as I live, that worry will be there whether I want it to be or not. 

Sometimes, I don't think people consider all the extras that come along with diabetes. Dealing with schools, strains on marriages, other children and friendships. Very few of us can say we didn't loose a friend or two through all of this. I understand that friendships come and go naturally at times, but when you are hurting over something so significant, so life altering... the pierce of loosing a friend hurts a whole lot more.

Some say that you should just do what you have to and move on. They say that I need to put "me" first. If you have the ability to do that... great! I certainly commend you, but I don't think that's a one size fits all solution. Some of us, choose to dive in head first and submerse ourselves in knowledge. Some choose advocacy as a way to give back or even cope. Some of us feel that by taking the burden for as long as we can will somehow help our children not burn out. And some of us have children, so young, that we don't have much option but living our life around all that D demands. It sucks, at times, but we choose to be that involved. We do this because we think, hope or pray that it will make a difference for their future. I, for one, don't feel that there is anything wrong with that.

But back to the question... Am I? Am I more that what I have become since D came into our lives 4 1/2 years ago? There was a time when my answer would have been no. There was a time when I was all alone. Lost. Swimming in numbers and medical supplies. However, time and new friendships have healed the open wounds. They are now scars; and though they may still be visible and sore... They are healing.

For me, going back to work has been both a blessing and a curse. On one hand it is my escape from the 24-7 that diabetes requires. I was forced to hand over some of the work load, which gives me a break, however, along with with handing it over, comes more guilt and more worry. Because I am not there.

Working also hinders being able to advocate for Justin's needs at school. More guilt. This has proven to be my most difficult challenge. The school, UGH! That is all I will say about that.

For me, working is a necessary inconvenience. Though I am grateful for my job, and I even like it, I didn't choose to go back to work. I wish I could have prolonged the inevitable a while longer, but D, that rotten, stinkin, no good, D... choose my fate for me. D is not cheep. Just another "extra" that comes along with diabetes.

Still the question remains...  Am I more than DMom? Sure! I am Justin's mom and Leighanna's mom. I am a work at home mom too. So I guess there is more mom to me than just D. It just seems that D is my most unruly of the bunch!



**This post is the brainchild of the uber awesome Hallie Addington, the “More than a D Mom” series. Posts will continue throughout this week and maybe even next week.

You can see Hallie's post from day one here.

And then be sure to check out the dangerously fabulous, Meri's post from day two here.

Up next, a DMom full of Candy Hearts, Wendy, will hosting the "More than A DMom" series. Be sure to pop on over tomorrow to read Wendy's take on things.












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