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.












Sunday, April 28, 2013

Finding time...


You’re writing the story of your life one moment at a time.

~Doc Childre and Howard Martin


 I was chatting with a friend tonight about all the different opportunities there are to get involved in the DOC. There are like 1 million Facebook groups(literally), twitter(which I suck at), chats, conferences, DSMA, JDRF etc...

Then I made a comment... "I NEED to get back into blogging; I can feel myself sinking".

For some time I have been saying "I need to start blogging again, but I just don't have time". Life as a working mom doesn't leave a whole lot of time for blogging. But ya know, this was my diary. Granted, there's no key to lock it up before I hide it under my bed; anyone can read it, but it is where I wrote about my fears and my victories. It's where I found help and friendship through a dark time. It's where I could be silly and be me.

I miss having that outlet and I can feel the weight pushing down on me with out it. That kind of scares the crap out of me - I never liked that dark place.






Friday, February 22, 2013

The DOC Rocks - The School... not-so-much

“There is no exercise better for the heart than reaching down and lifting people up.” 
― John Holmes


This really is a great community. Anything from medical supplies to information... it's yours when you need it. I asked one person for a help; and not only did he help me... he recruited others to help me too. Thank you, Scott, for not only getting me the information I needed, but also giving the strength to pick myself back up and go another round.

I haven't been able to sleep much.The upcoming meeting at Justin's school had my mind in constant motion. Oh, did I mention that? Yeah, we had a meeting a few weeks ago. I've been through these meetings before, but this is a new school for Justin. We are no longer in the comfort of an elementary school. I've never volunteered here. I didn't spend years on the board. I have never built a relationship with anyone. I couldn't... I had to go back to work instead.

So this meeting(the one a few weeks ago)- it went "okay". I asked for an additional accommodation because Justin seems to be "missing" stuff. He has a shit load of stuff going on... on top of D, Justin was dx'd with absent seizures, meaning he "looses time". Granted there's medication for this, but let me tell you... I'm not sure which is worse, the medication or the seizures themselves. That's a couple of the challenges Justin faces... he has other medical dx's as well, all of which mess with the mind and impairs brain function. One alone may or may not be easily overcome, but all together... he needs a little help. Simple.as.that! I think we do pretty damn well considering.

But I digress...

Due to seizures, side effects of medication(ie: memory loss, inability to focus, loss of time etc...) I asked for communication, however the teacher wanted to go about it, of all assignments that needed to be completed at home- in order to ensure they are completed and turned in on time. This is an issue... he missing instructions.

I was there well over two hours... the teachers had to leave long before I did(apparently they have classes to teach?? I dunno!) so the excuse that day was that the teachers weren't there to "agree". I thought we were all on the same page before they left, but okay.

So I hear nothing... I give it a week and reach out the guidance counselor. I get a call back and argue my point, once again, before she reluctantly agrees. I was told I would have the updated 504 to look at by the end of that week.

Instead, I get an email with an apology. Another entire week goes by - so that following Monday I call. You see, we were suppose to have the 504 in place before conference night(which was tonight); when I called... conference night was only 3 days away.

Finally, Tuesday afternoon, Justin brings home the new plan. It reads "Justin will write the assignments in his agenda. At the end of class he will give it to the teacher to initial and if the assignments are not there... the teacher will communicate with parent". Great! Give Justin an opportunity and add in a back up plan, right?

I was okay with this and signed the new plan thinking everything was set. Only, it wasn't. Apparently, "some" of the teachers did not agree. "They don't feel it is their responsibility to communicate his assignments with me". WHY DIDN'T WE CONSULT THEM AT SOME POINT IN THE LAST THREE WEEKS??????????? Wasn't that the point of not doing it that day??? Mind you... I didn't get a call about that. I found out at the conference; the conference where we were going to "go over the new plan with the teacher". UN FUCKING BELIEVABLE!!! So essentially, that conference was a waist of my time because I now have to go to ANOTHER meeting, where the district ESE supervisor will be called in to "hash it out".

Believe me, I am not asking for a free ride here, I am not ignorant to the fact that things will get more challenging as Justin gets older. I worry every single day about my choices, but the alternative is to do nothing and let him fail, when he did not choose to have these disabilities. He did not choose to take this medication... I am the one who hands it to him every single day.

HE had no say in the matter.

I have no choice but to help him... it is my job. I will just have faith that it will all work out in the end and I will have to face the future... well, in the future.













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