Category Archives: diabetes

“Inspiracon”

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Inspiracon? What kind of crazy not-a-word title is this?! It came to me while in DC last weekend to attend the JDRF Government Days, which in fact was one of the most amazing and inspiring weekends of my life! So when I sat down to write this blog entry, the 12-years-of-Catholic-school girl in me needed to google the word to find out if I truly made it up, or if in fact it meant something totally different! And believe it or not, I found that some one else had already coined the phrase “inspiracon” with reference to his company and his logo. The concept was founded by pro-snowboarder Rob Kingwill. And so here it is: (from their website, linked below)

THE AVALON7 INSPIRACON

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Our logo is called the Inspiracon. It is designed to inspire you to be in the flow and activate your higher self.

here is their motto:

ACTIVATE: 
THE ART OF LIVING IN THE PRESENT MOMENT

The ACTIVATE Technique is a simple process that you can use to help manage conflict and fear.

It can be used in all areas of life, from snowboarding to business to your personal life.

The three principles are CENTER, FOCUS and FLOW.

ACTIVATE the three principles to help you to move through fear and conflict with grace and power by being present and mindful.

Follow this link to see the detailed outline of their concept: http://www.heartchasers.com/liveactivated.html

But back to JDRF and Government days…as I said earlier, it was an incredibly inspiring weekend! But more than that it was humbling and mind-blowing. And interestingly, I could now apply the above principle to my life as a parent of a child with T1D! The basics are this: Find your center, focus on your goal and go with the flow! That describes any T1D parent I know! Not by choice, but by the nature of the unpredictability of the disease, we must learn to approach each day this way, or we couldn’t keep our children alive!

Spending a few days in DC with people who have such resolve and focus on finding a cure to T1D is almost impossible to put into words, as I sat there on day one, listening to introductions of who these people were and what their connection to T1D was, I was overwhelmed, you see my son has T1D, but I also have two other children who are at higher risk to develop T1D because we know they have the antibodies, which basically means, they could be diagnosed, tomorrow, next month, in ten years, or never. It’s a heck of a way to live, as a parent, knowing that at any moment I could wake up and have 2 or even 3 kiddos who have to live with T1D, and I have always been able to convince myself, that God would never let that happen, but as I sat there and listened to person after person talk about their one, or two or three T1D kids, I almost broke, I was looking for escape routes, getting ready to bail, to run back to my tiny RI town where I could continue to live in denial and only secretly cringe in terror every time, those kids of mine asked for an extra glass of water or peed one too many times… But, then it was my turn, and as I stood up and looked around the room, I saw a group of people who already knew me, they could immediately empathize, they have been there, holding their breath, as they squat in the dark, next to their child’s bed and for the 10 seconds that feel like hours when the meter says “checking” they have prayed that the BG is in range and that they won’t have to give a shot or force feed a juice box to their peacefully sleeping child. It’s an instant bond. But more than that: Some of these are adults with T1D, they made it and they are ALL inspiring, successful, amazing adults with a resilience and a strength that only a survivor can possess! And I knew I was in the presence of greatness!

I am sure It sounds crazy to some of you, but as I looked around I knew these people are fighters, just like me they vowed on the day their child was diagnosed, they will not stop until this disease is cured, and hearing where the research lies right from the horse mouth, so to speak, was just awesome! As one mom put it, we were like teenagers at a rock concert, wanting to rush the stage, just for a closer look at the devices that will change the lives of our loved ones living with T1D. Knowing that these are the people advocating for a cure, telling their stories on Capital Hill, advocating in their own States and never stopping, always believing, always hoping is incredibly comforting to me as a sink back in to the day to day of life with T1D. I am so grateful for this experience and I only hope I can continue to make a difference for Matthew and all people living with T1D. I do believe that the day will come when he will say, I remember when I used to have diabetes!

ACTIVATE SNOWBOARDING

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Closing in on Three Years…

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It will be three years on August 19th since my son, then 6, was diagnosed with Type 1 Diabetes. Wow, three years…it seems like forever ago…yet; it seems like just yesterday…

Recently, I was asked to describe what it felt like, standing there in Hasbro Children’s Emergency Room, being given the news. That is so hard to explain, those of you who have been there, well, you know. Those of you who have not, I pray that you never will have to experience anything like it. It feels like the ground falls out from underneath you. There are words hanging in the air like pancreas and beta cells and injections and carbs and ketones and blood sugar and not working, and very sick and no cure…it is devastating to say the least. To look at your child, skinny and weak and gray and know that this has become his reality. Forever. Literally in a matter of seconds, when you hear the words: your child has Type 1 Diabetes, your world comes crashing down and you know, that carefree life you always hoped your child will hold onto as he grows has just been torn away by a tiny little organ that quit working, an organ that you had always thought of as insignificant, has single handedly destroyed your child’s innocence. Now he will know about pain and sickness and heartache…You want to crumble, but you can’t because in those same seconds, you have now become his pancreas, it is now your job to keep him alive, every second of every day, because without insulin, he will die. There are NO words for the weight of that reality.

Last Sunday as I sat in church with my family and listened to our Pastor give her homily, I began to reflect on how our lives are different than they would have been if T1D never invaded my little boy’s pancreas. The basic message was that you have two choices when you hit rock bottom: you can crumble or you can rise to the challenge. And believe me, I did crumble for a while. Don’t get me wrong, I took care of my son, I read everything I could about T1D and how to mange it, I devoured the research data on how they are working towards a cure, I educated everyone who would be with my son how to care for him, but on the inside I was crumbling.

Then, at some moment, I am not even exactly sure when, as I was up checking blood sugar in the wee hours, I watched my son sleeping and I realized how amazing he was. I remember thinking, he never crumbled, not for an instant. He was so incredibly brave with every shot, with every high and low, with every stomach ache and ketone tests and finger sticks and talk of pumps and sites and through strangers invading his little body, through learning how to count carbs and hearing people say big words like neuropathy and having to listen to people, who for some reason, thought it appropriate to talk near him about loss of limbs and blindness and heart disease and death. I asked myself how can I stay angry and hurt and feeling forsaken by God, when this little innocent soul was taking the brunt of diabetes and he was still smiling and living life to the fullest and educating people about his disease and advocating and wanting to raise money to find a cure? How could I crumble when my six year old saw that the only way to go from here was up?

So you see, my son, my angel, my hero, taught me that when you hit rock bottom, the only way to go is up! That isn’t to say you can’t be knocked down or beaten on some days, you will be again and again, but the important lesson here is to ALWAYS get back up! A lot of days I still hate T1D, and I would take it away from my son in a New York minute, but it is here to stay until there is a cure.

So back to my original reflection of how our lives would be different, had T1D never invaded my family? I don’t know. But what I do know is that because this journey was chosen for us, we are stronger and closer and we can always say, “yeah, we have seen the bottom, and it is ugly and scary and painful, but if you look hard enough, and you rely on your family and your faith you will see that no matter what your burden, the only way to go is up. I wish that for all of you. It gives me comfort to know that my son can and has and will continue to be an inspiration. All of you who know him can see, he will not let diabetes or anything else keep him down, and that may be a better life for him than the carefree innocence I once hoped he would always have, that same life I grieved after he was diagnosed. One thing that life has taught me thus far is that blessings come in many forms, and for us, closing in on three years, i can honesty say T1D has blessed us in so many ways…

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