Saturday, August 3, 2013

For the Record...

Let me share a little bit about myself...

Overall, from the outside looking in, I am a happy-go-lucky positive person. I'm goofy and I have a habit of befriending those who just happen to be sitting beside me. I speak up as the voice of reason and, even if do not agree, I always try to see all points of view and even stick up for the person(s) who are not there to do it for themselves.

I do, from time to time, love to people watch, but it is all in good fun I promise (shame on me, I know).

I enjoy volunteering and I have taught my kids the value of doing the same. I also ALWAYS do my best to offer a few kind, uplifting words to anyone who needs it. However, if I just don't have it in me that day... I am considerate enough to walk away or click the "X" in the upper right hand corner of the screen.

That is me, on the outside... in short!

From the inside I am full of worry... I haven't always been this way on the inside. At one time, my inside mimicked the outside and all of its happy-filled, smiley silliness. That side of me still breaks free from time to time, but something happened when Justin was just a baby, and then another and another. Along with that came worry as diagnosis after diagnoses was brought to our attention.

These days...

My heart breaks, just a little, every time I watch Justin have a seizure. I can relive them in my head, over and over, at anytime and without warning.

My heart breaks, just a little, every time he has a low. Knowing what diabetes has the potential of doing comes rushing to the forefront of my mind and I can't help but wonder if I could have done something, anything, to avoid it.

My heart breaks, just a little, every time he's high. Man, is he going to throw up? How can I get his belly to stop hurting? Maybe I should have changed his sight sooner.

My heart breaks, just a little, every time he looks sad. The look on his face is etched in my mind for unsolicited instant replay.

Justin won't know how I am feeling on the inside because I hide it. I lie with a straight face(or maybe a goofy one). From the outside, we fix it, forget it and move on. But on the inside, there is a mental toll that comes along with all he faces. That part is unavoidable sometimes; no matter how positive you make yourself out to be... you are also human.

Yesterday I made a comment on one of Hallie's post. I made reference to the fact that I think the stuff that our kids deal with IS a big deal to them. THEY are the ones on the sidelines testing and treating lows. I said that "Mentally. Emotionally. It is  big deal." I would Never say that to Justin, but lets face it, their friends don't exactly sit around waiting for them. Even if our kids don't expect them to, it still kind of sucks. This is MY opinion and I shared it.

The toll of being "different" has become more and more evident as Justin gets older. The challenges now are different than they were when he was 7 or 8. He sees more, he hears more and he knows more. It doesn't matter how good we are at being positive... he has his own thoughts. It doesn't matter how much we act as if "its no big deal"... this isn't easy for him. Part of his life, yes, but not exactly easy.

I suppose as each year passes we will face a new or different set of challenges, not only medically, but normal teenage/growing up challenges too. Some of which will be magnified by the medical stuff; that is just simple fact. I have no doubts that we will still have many triumphs, as we do now, but that will not change the fact that the challenges need attention too. That's just life in general, right?

Anyways,  back to the comment on Hallie's post...
There was a response to my comment... a kind of insulting one actually.  

I was judged and it kind of pissed me off. There was assumptions made about how I feel about Justin's diabetes. You shouldn't judge what you do not know. This holds true for everyone.

It was said  that "he can participate, be involved and be valued by society regardless of the condition". WTH?!?! What makes this person think that he isn't a valued part of society already? 

I can assure you he/we are already a valued part of society... we are alive aren't we? I can assure you we live in a happy house. We laugh and joke and do fun family stuff. We are silly. I torture Justin by taking him shopping and making him do chores(I know, I am a terrible mother). We are close. We are encouraging. We are supportive. We also have to face diabetes and epilepsy along with some other stuff... and that IS a big deal, no matter how hard I try to pretend its not.











 





9 comments:

Joy said...

It's hard to read that your heart breaks a little each time, because I want to save you that pain; but obviously I can't, and I relate to it, as well. Oh, for that magic wand, right??! Keep on keeping on, as you do each day. A cure just can't come fast enough. ((((hugs))))

Sarah said...

It would be pie in the sky, rosy colored glasses, way of viewing life if a person thought having t1d wasn't a big deal. The incredible part was how much having Isaac diagnosed with diabetes allowed TJ to talk about his true feelings about it with me and his family. Prior to that he was a tough "no big deal" kind of guy - but now watching Isaac and helping Isaac find his voice about how diabetes feels has brought about a tremendous amount of growth for him in terms of his feelings/attitude/experience as a PWD.

JMom528 said...

Funny, you always comment that I remind you of yourself. I was reading this and saying the same about you! I always feel like people think its no big deal just because of my attitude on the outside, I too appear happy, and not worried at all. But if I walked around on a daily basis with my true feelings showing, I wouldn't be very fun to be around. My heart breaks reading this because I know that look of sadness all too well....and he was sidelined at his own birthday party.....while his friends continued to swim :( My heart was so broken then, he was so excited about that party. Ok I've rambled enough lol

Tammy Amommy said...

How on God's green Earth can any parent look at their T1 child and claim it's "no big deal"??? My son came in this afternoon because he felt low. He took his four glucose tablets and sat on the porch waiting for the timer to beep. His friend sat on the porch with him, but while Joel came in to check and eat a quick snack, his friend ran off with another kid. When Joel opened the door and his friend wasn't there, I watched a sad look come over his face and his shoulders dropped. I said, "Go find them!" and he took off running.

I get it. <3

Reyna said...

The long and the short of it is the DOC should be here to support and/or to respectfully disagree on certain topics like management/accommodation usage/ etc. The one thing that is taboo (IMO) is judging people for their feelings. I am so very sorry this happened to you my friend. I love you dearly.

Hallie Addington said...

Our kids deal with so much. And while I can look at sitting out a couple of minutes as not the end of the world- to my sweet one- it is. It just is.

Same same. Something in me broke at her dx. I'm different now. I am full of worry. And I hide it, too. People tell me I'm so calm!! Sometimes...

We are doing our best to raise kids who are confident, successful, caring, compassionate... And healthy. Mentally and Physically Healthy. Adding diabetes- along with other stuff - makes that a tall order. But I know you. And I know Justin. And I think you're doing a great job!

Meri said...

For the record: I love you.

Alexis Nicole said...

No room for judging in our beautiful circle of D friends, only love and support.

You are an awesome mom, friend, D advocate and person, and anyone who thinks any different doesn't know you or know squat.


Same same, twin. <3

Misty said...

For the record...I met Justin and loved him to pieces. (And his momma too!). It is totally acceptable that we all not share the same feelings. Not acceptable to tell others that it is or is not ok to feel a certain way.

Keep being the awesome team that you are!

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