Tag Archives: #T1D

When clipping their wings feels like a plausible action….

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It is time to let go a little.

Sending my son to overnight diabetes camp is the single hardest thing I have ever done as a parent.

Leading up to drop off day, my anxiety was through the roof, I expressed my anxiety on Facebook and to friends and family and got extremely well meaning feedback, like, “He needs this” and “It will be good for you both”, and “Eventually he has to do this on his own” and ” It will be so great, you will be able to sleep”, and “he will have a blast”…and the whole time, I am screaming in my head wondering why doesn’t anyone get how hard this is?? My D mom friends knew, and they were amazing…just supporting me and saying, “I get it.” And I wondered, how can I make people see that I am not crazy, and I want him to have an amazing time, and I am pretty confident he will, but still…how can I help people understand why I am so terrified?? And then, it hit me…laying awake, in the wee hours. For the last FOUR years, I have been a pancreas to my son. Literally his pancreas. You see, he was 6 when he was diagnosed, the responsibility couldn’t be his, he was just a baby. Everyday, for FOUR years, I have been responsible for keeping him alive. Counting carbs, dosing insulin, changing pump settings, fixing high, fixing lows, checking, checking and rechecking his blood sugar, all day and all night, 24-7…and yes, I do get a break, he has the most amazing school nurse, who genuinely cares about him, and who becomes his pancreas at school…but I always know what his numbers are, what he has done, I give input to his nurse at school and his father at home and on the rare occasion I leave him with family, I am in constant phone contact with them. I am a diabetes control freak. Not because I want to be all up in my 10 year old’s business, but because I have to be, because, without someone who knows all about his diabetes and what to do in every possible scenario, he could go into a coma, have a seizure or even die. And now, I was going to drop him off for a week, in the woods with a bunch of T1D teens?? Sure, there will be doctors and nurses and people who know more about diabetes than I do, but, they are strangers, how could I expect them to care about my son as much as i do???

But wait, in the last 6 months or so, I realized that somewhere in this fog of type 1 diabetes my baby has grown up, I see that he is ready to fly, and so I have begun to let go, I know I have to, and more importantly I am realizing there is one other person in this world who can manage his diabetes as well as I can, and probably even better than me. And that person is him. So enter Diabetes camp.

We have been encouraging him to go since day one of diagnosis, (although, I admit, secretly chanting in my head “please say no, please say no!) But this year after meeting a staff member from the Clara Barton Camp and a couple of kids who have gone to Camp Joslin, he decided he wanted to go. And so we signed him up for a week.

The first day was a nightmare for me! Check-in was crazy and chaotic and I was filled with anxiety as was my husband, and Matt’s identical twin, Matt had never been away from us! We all tried to act cool, but I am sure we failed!  Anyway, after the check-in was done,  his cabin was checked out, bed made and bags unpacked, it was time for his swim test.  We rushed down to the lake, there was 5 minutes left to take the test so like a bunch of idiots we shooed him off to the water without one last BG check where he jumped in, had a strong first lap, and then, I saw it happening, it was like a bad, low budget slow motion horror movie scene, he was going low…there was nothing I could do..in a flurry of activity he was banished to the shallow end for the week and I could see the defeat in his face. Diabetes had struck again, that low-life, deceitful SOB had tanked his BG down to 44. My son was trying so hard not to cry, to hold it together and he said “Mom, I don’t want to stay..take me home…PLEASE?!” And I had two choices: 1) I could be his friend, scoop him up, clip his wings and never let him fly, or 2) I could be his parent and make him stay. Clearly, if you know me, you know I wanted to do the first, but I didn’t, I said, “Matt, you are low, you can re-take the test tomorrow.” He begged, tears now freely flowing, and I said ” you will never forgive me, if I take you home, and if you stay, you will thank me for not taking you home”. So we pulled it together treated the low, and left him at Camp, smiling with a BG of 106. Needless to say, that night I cried myself to sleep.

The week was the slowest fastest week I have ever experienced! And when I arrived at Camp Joslin on Friday, I picked up a different child. He still needs me, he is not ready to move out yet, but he has grown into a young man who is responsible and smart and funny and unique and incredible. Did camp change him that much in a week, well, No. This amazing young man has been growing and changing right before my eyes, camp just made us both realize, he can do this. He is ready to begin to fly!

Tomorrow will be the 4th anniversary of his diagnosis, always a bitter-sweet day for us. It is a day filled with raw emotions and nightmarish memories. The words from his doctors mouth, “Matt is very sick”, “you need to get him to Providence”, rubbing his sternum in the car as he became unresponsive right before my eyes, the sick realization, that my child is dying. The horror to hear the words, “he has Type 1 Diabetes” and the shear fear of keeping him alive, of becoming an chemist and a mathematician and a pharmacist literally overnight. And then there is the overwhelming joy that my baby is alive, that this horrible disease did not steal him from me…I cannot even find the words to describe the myriad of emotions that have flown through my being over the last four years. But Today and tomorrow I will be grateful that I have my son to hold each day and that I will be able to let him fly and watch him soar.

So in honor of the gift of having him for these four years and many years to come, I ask that you all visit this link:

https://liveonaz.org/stories/addison-parker/

and meet Ms. Addison Parker, who lost her life to un-diagnosed T1D at the age of 5. Her family made the amazing sacrifice of donating her organs and in their darkest hour gave hope and life to many other people. I don’t have the words for them, I want to say something that will ease their unimaginable pain, but there is nothing, so I can only hope that the knowledge that their loss can remind us to be grateful, to love our children and to let them fly, can sustain them each day as they continue to face life without their baby. I promise Addy to do my best to remember, even when diabetes is beating me down, the blessing I was bestowed on that hot summer August day four years ago…rest in peace Addison…

“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