THE 3 AM POST...

I can't sleep. I have been up since the 2:30 alarm screamed at me to test Justin. My brain refuses to turn off long enough for me to fall back into my previous drool-ish slumber. Had I known what was in store, I would have skipped giving him the Juicy Juice and thrown in a little night time basal testing... I'm over due anyways.

Alright, back to "my brain" - its spinning! I received a call from the guidance counselor today about a "team meeting". She mentioned some emails and said we all needed to get some clarification. The ONLY emails that have been sent were about an assignment Justin was penalized for turning in late after a low blood sugar (you can read about it here).

It was over a month of emails trying to get that rectified. Unacceptable, I think. In the end she did give him full credit on the assignment, but not before searching... literally searching, for a loop hole that would allow her to mark him off for turning in an assignment one flippin ass day late. He was 48, DAMN IT!!!!

I don't get it. Why is it so hard to make people understand. Why does there ALWAYS have to be one person giving our kids a hard time. I'm not asking for the world and it surly doesn't take a rocket scientist to read a 504 and say to themselves... "self - this kid has accommodations for a reason" and they could also throw in a little "they have enough to deal with; without me being a pain and giving them a hard time".

That's wishing for a fairy-tail, right?

Advocating...

ad·vo·cat·e, ad·vo·cat·ing, ad·vo·cates. 

To speak, plead, or argue in favor of.   

     

Several years ago I was in a meeting with the school principal. I made a comment, a slip of the tongue, and said something like "I have been fighting for him for a long time". She responded with "we don't like to use the word "fight". 

Yeah, I'm sure they don't.

There are very few people who know the full background of my sweet Justin. Very few people who know that when he was young we had him tested for Autism, then Aspergers and so on. There are few people who know the countless days I spent waiting in OT and speech therapy offices. I don't retell the story of the teacher the kindergarten teacher that, very loudly, announced in the hallway at drop off she felt Justin was OCD; because he was picking at dried glue. I try not to share the story about the teacher who put him in the closet. Yes, I said the closet; it happened in preschool, when Justin was only 3. 

But isn't that part of advocating? Sharing your story to let others know they are not alone. 

I have been fighting advocating for Justin for more than ten years. I'm a little worn out, but my job can not be done quite yet. I'm starting to wonder if it will ever be done. I have visions of me calling corporate bosses to tell them Justin NEEDS his snack and that he MUST be able to bring his work home to complete. They won't want me to go down there. 

To me... advocating is directly connected to fighting. I wish it felt differently, but I always seems to be fighting with someone. The school, the insurance company, the doctor that wants to treat in a way I don't feel comfortable with. I have however learned, over the years, to not back down and choose my wording wisely because it could mean the difference between getting what your child needs and them getting the bare minimum. As an advocate, I think it's sad words can cost our kids so much. 

I have learned, the older Justin gets, the harder it becomes to advocate for him. With each added diagnosis, it gets harder to word your concerns in such a way that they don't sound like a bunch of excuses. School has to be the hardest... instead of a couple teachers, we now have seven. Keeping up with seven different teachers, in addition to making them understand, kind of sucks (or in proper terms... it's unsatisfactory)? 

My most valuable lesson in all of this has come over time. Time has showed me that it has ALL been worth it. Every bout of anger, every tear, every phone call and email sent has all been worth it. I've witnessed it's worth as I have watched Justin grow. I have witnessed how far he has come in spite of those who give up because he has been blessed by those who won't. I have had the chance to watch a child grow everyday that could have easily been chalked off to a behavior problem, and almost was, when all he really needed was a different approach and someone to care enough about him.


To be honest, I had hoped to hang up my advocacy belt soon, only I know I still have a long road ahead. Not nearly as long as Justin's, but I have to lay the groundwork for him now; and that's a big load to haul. All I can do is keep truckin along and pray with all my being that what I can do will be enough. I don't have any other choice if I want Justin to have a fighting chance. Hmm, there goes that "fighting" word again.

Thank you, from the bottom of my heart, to all of those who didn't give up and have been influential, to both of us, along the way.  

     

A year ago today...

It was a year ago today that the nightmare began... Literally. A year ago today that I would blog about what was coming; even if I didn't know it was. A year ago today... My warning. The warning I didn't understand. The warning that didn't cushion the blow of another diagnosis.


One month from tomorrow marks one year since Justin was dx'd with epilepsy.
I would like to say that all is well, but I would be telling a tall tale. I would love to say that the medication is in order and is controlling the seizures without any of the ugly side effects, but that would be a flat out lie.


This one has been hard. Its not as much the seizures, though they are heartbreaking to witness, it's the medication. Memory loss, hair loss, aggression, short temperament... Just a small taste of how this medication changes you. Makes you loose yourself. How it has changed Justin. 


I am so tired. Tired of fighting the school and the teachers. Tired of missing who Justin is. Tired of constant emails to remind people about accommodations and pissed that a teacher feels that she has the right to discuss Justin's medication changes with HIM.


I'm tired of not knowing what to do. What choice to make. What path to follow. I'm tired of being scared that I am going to screw EVERYTHING up for him. I'm tired of the feeling that I am going to fail.

February challenge... Day 2

The "fine print" (for full details... go here) 
1. Use the list above as inspiration and take a photo everyday.
   -okay, so I already broke the the very first rule on the very first day. I am ashamed, but in my defense... I didn't read the rules before I started(typical me) and it was a last minute join at 5 am this morning.

2. Share! Wherever you want... FB, The Twit, Blog, where eva.

3. Check out everyone's pictures. As of today, there are 800 people signed up for the challenge.

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Okay, so now that the "fine print" is out of the way...

Today's picture challenge is "words"(see... I CAN follow the rules).

Rather than take a picture, I decided to create one using one of my favorite quotes. I found this quote a little while after I started to "come back to life" so to speak. It made sense to me and I needed to hear that I might still had some strength left in me. I keep this quote in my car and I look at it whenever I pull down my visor. I don't think it will ever get old... it seems as soon as I find my strength, something comes along that pushing me towards giving up again.

Just gotta keep truckin!!

Happy Thursday!

THE BACK SEAT...

I am ashamed to admit that Diabetes has taken a back seat to everything else lately. The new job, the house, the epilepsy medication. I have allowed Justin to run higher than usual. I have avoided making basal changes because I am to tired to get up and check more. I have allowed a site to stay in past 3 days(gasp!!). So you can imagine my stress knowing that our three month report card was scheduled for this week.

The prior three months were filled with constant lows. Constant "multi check nights" and double the stock in Juicy Juice. Three months ago... his A1C came back at a 6.4.

This time around we ran in the mid to upper 100's. Sometimes 200 with the occasional slight chance of a low. I fully expected his A1C to be back in the 7's. I fully expected a hang my head in shame for not doing better. Doing what I could; because to be honest... I turned my head and did nothing. A lot!

So how in the world did we get a 6.8???

I'll tell you that it is way less stressful to deal with him being a little higher than the constant lows we were having before. Those are just draining. I think I will try and keep that 6.8 around for a while and continue to focus on those stinky seizure meds.

I'LL TAKE THE DIABETES...

The constant guilt of making the wrong decision is eating at me. I don't know what to do and I want someone to make the decision for me... just to lift SOME of the guilt. SOME of the burden.

As you know(or maybe you don't), Justin was dx'd with a form of Epilepsy back in April(<-- you can read about it there). Seven months later, we are still trying to sort out the medication(<-- you can read  a little about that here).

In short...the first medication caused stomach pain and vomiting. The second one they wanted him to take I refused. Med number three was working well until we realized that Justin was still having seizures, just not as often. The increase in the meds that were, up to that point, working... proved to have negative effects when increased. Justin started complaining of abdominal pain and his mood... woah! Short tempered and cranky to put it lightly.

Last week we decreased the meds and the above mentioned improved. However, we still have that "little issue" of him still having seizures.

Anthony followed up with Justin's neurologist today and they gave him the new medication that they want Justin to start IN ADDITION TO the decreased dose of the current meds. When I got home this afternoon, I realized that it is the same medication that I refused to give him when the first meds didn't work.

This medication scares me. I don't know what to do. I don't know what is best for my son, who already said something about the 7 pills a day(5 in the morning and two at night) that he was taking when we increased the dose.

He's 10... not 80. 10 year olds should not have to take that much medication in a day and my heart broke when he cried about it.

I can honestly say that as much as I hate what diabetes puts him through... I would take Diabetes over the Epilepsy and all of its horrid medication ANYDAY.

I never thought I would be in a position where I didn't know how to care for him. Where I didn't know what was best.

I just don't know what to do and I am terrified that I will make the wrong choice. I guess because I am not the one that will suffer because of it.

Hug your little one tight. They are all stronger than they should have to be.