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

Who Have I Become?

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Some days, I don’t recognize myself….I used to not care what anyone thought…

I didn’t start out that way, in fact, I think it was a “fake it until you make it” situation. I remember being young and being so worried on the inside, that I wasn’t good enough, that it affected so much of my life it was ridiculous. Then at some point, it was like “light dawned on Marblehead”, and I thought, “really, who gives a fuck what anyone thinks??” And life became so much easier. I met an amazing guy, we became best friends, got married in 2000…Life was good.

Then,  a few years into our marriage we decided to have kids…it turned out not to be so easy…within the first 10  years we had 3 miscarriages, in 2004, after 12 weeks of bed rest (almost 6 of them on my ass in a hospital) we had a healthy set of twins and in the next couple of years two beautiful, healthy baby girls. I was so grateful that they were born healthy, I thought, nothing can stop us now!

And then in the span of 2 short years we had a child who became septic and almost died, a child diagnosed with T1D, a child diagnosed with a seizure disorder, and a child diagnosed with Celiac Disease. The hardest 2 years of my life, I don’t know about those of you who have children with chronic disease, but for me, I was consumed with worry…in a constant state of flex, waiting for the next low BG or the next seizure, for the next major diagnosis…. the anxiety was overwhelming at times. I didn’t sleep, I barely ate and isolated myself away from pretty much everything, including my best friend (you know that awesome guy I met?)

Fast forward to recent days and months, I am exhausted, I am still filled with worry most days and nights. Thankfully, the seizure disorder was outgrown. But the Diabetes and the Celiac are here to stay. My son who has T1D, does not feel when he is low…and that is terrifying.

I guess in some ways I have felt that if I could make people understand how scary and unpredictable diabetes is, then they would be as dedicated to finding a cure as we are, but that is simply not true, and I get that, because the only way to truly understand a life with T1D is to live it. I thought by sharing the stories of lives lost from this evil disease and by sharing the crazy numbers that Matt experiences I could single-handedly educate everyone who bothers to read my posts! I became so wrapped up in my “mission to educate” that it never occurred to me that I was doing more harm than good. People began to say things like “wow, Matt’s diabetes is really bad!”, and calling him “brittle”, and that just made me harder on myself, thinking, i was failing him.

Then, a couple of weeks ago, I got sucked into a hoax …a blog was posted about a young girl who was recently diagnosed with diabetes dying in her sleep. My heart ached for this mother, for this child, for my son, for me, and i didn’t hesitate, I shared it, because I wanted you all to know how evil Diabetes can be. And then I found out it was a lie, a hoax, a mentally ill person wrote this flat-out fiction( I have to believe she was mentally ill, because I cannot even begin to fathom why anyone would do this otherwise) and I was dumb-founded. I whole-heartedly believed what I read, and I thought, “wow…who have I become?”

I somehow let diabetes suck me in, I began to focus on what I wanted to change, what I hated about our lives, about watching my children have to deal with so much adult crap, that I neglected my self, my marriage, my friends. I lost judgement and I was desperate to have people “get it.”  But the truth is, I am tired. Tired of being angry, tired of being scared, tired of being tired. I miss my life, I miss my best friend, I miss not giving a fuck what anyone thinks!

So the question is, how do i find me again? Well, I will….overtime. For now, I plan to go back to advocacy and education through what I know. Diabetes is running rampant, 80 people a day are being diagnosed with T1D, I want to help people be aware, to know the signs, to participate in awareness. November is Diabetes awareness month…I have a plan, we will find a cure, I have to believe it will happen….

and by the way, if you didn’t enjoy this blog…I don’t give a fuck!

Crap….Really??? Yup. Really.

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So yesterday, I spent two hours pouring out my heart, writing and editing…it was so healing and I thought ended in a pretty good blog post.  I was in a coffee shop, I lost internet access, so I closed my lap top and headed home to post, and when I got here…it was gone….

I haven’t slept in about 9 years…I was so into writing, I never saved it and apparently it didn’t auto save either…

So here you go:

Bottom line was this:  people are crazy, people lie, diabetes still sucks, but I am blessed. Until the next time I have a few free hours, That is all.

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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Strength in Numbers

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“A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.” – Christopher Reeves

I am not a professional writer or a professional blogger, I just write to the depths of cyberspace when the spirit moves me…but I do write from the heart, and that my friends is the only way I can relate the experience of watching 161 children, who all happen to have Type 1 Diabetes (T1D), stand together as a united front in our Nation’s Capitol in the hopes of winning the unwavering support of Congress in the fight to find a cure for T1D.

I have been sitting on my feelings for the last few days trying to decide how to write about this. I knew I had to…because it was amazing. Watching my 9 year old son talk eye to eye with the Senators and Representative from Rhode Island, was awesome. He stood next to them and shared his life with T1D with them, he showed them his pump and talked about the CGM. He told them how many times he checks his BG and that I get up all night to make sure the is safe, he told them that it interrupts his day and that it sometimes makes his have to sit out of activities, he told them sometimes he feels alone, he told them he could check his BG and give himself insulin before he could tie his shoes, he told them he was worried about his brother getting T1D…I was in awe.

But even more amazing than that was being constantly surrounded by kids just like him for 3 days. The instant companionship, the ability to understand each other without words, the fact that no one blinked an eye at a kid testing BG or getting a shot or sitting in a strange place (like on the grass at Arlington Cemetery) drinking a juice box or eating smarties before breakfast, by walking into the elevator and seeing a used test strip on the floor, by swimming in the pool with other kids whose parents were giving them the thumbs up sign every 20 minutes, or pulling their kids from the water every half hour to test.!

The experience of being around other “neurotic helicopter parents” (both of which I have been caled) The understanding and empathy in their eyes when you talk about that Low that took your breath away or that panicked feeling when you sleep through the 2am alarm, or the fact that they understand that feeling when you consistently walk into your sleeping child’s room silently praying that they are still breathing and that moment that feels like a life time when you are watching for chest rise and fall…it was so great.

I came home feeling empowered. Those amazing kids filled my heart with a renewed strength to fight for them, to spread awareness and to educate people about the lives of kids with T1D, to bring other kids to meet the Senators and Representatives, to remind them how close the research is coming to a cure, to spread hope and compassion and to follow the example of my son and so many others like him, who have overcome obstacles that would knock down anyone of us. These kids fight for their life everyday, synthetic insulin and electronic devices, needles and failed sites and highs and lows and ketones and stomach aches, feeling dizzy and irrational, shaky and tired and they still continue to live life to the fullest to fight for a cure to support each other sometimes just by being together. You see, there is strength in numbers, and I will forever be inspired by this experience, by these 161 kids, by my son. If these kids are any indication of our future, we are in great hands!

Finding the funny

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I started this blog thinking I could use it to find the positives in life with a child with T1D…I thought I could use my sense of humor (twisted and off-color) to be honest about how I feel, yet somewhat entertaining and not depressing…over the last few months, that has proved to be tougher than I thought…

Matty barely feels his lows, he has started, at times, to blow off testing before he dives into eating, or to not finish what he starts eating, after he has been dosed with insulin, he has started hating his pump and the fact that it “screws up his throwing arm”…he has had to sit out, or be pulled from activities that his twin and his friends go on enjoying because he needs to recover from a low that he didn’t feel until 50 or lower…

I try so hard to find balance between letting him be a kid, and taking good care of his diabetes, and most nights I go to bed (for a short time before I am up again to test) wondering what I could have done differently…I am tired, bone tired, a tired I never knew I could somewhat function with. I had become great at putting on a smile and saying “everything is fine”…and even that is getting harder…some days, I am afraid to talk to anyone because they might find out how sad and crazy and scared I really am…

I know diabetes is hard and maybe I am too much of a thinker, I am envious of those of you who can forge through this life and not be a tiny bit angry or sad or even just plain pissed. I try to spread awareness through Facebook and even in general conversation, and I have been told that is negative? maybe…I just want people to understand how much my little man goes through, how we have to think about EVERYTHING constantly…how there is no break…maybe some type 1 mom’s get a break, they may have family who gets it or friends who can safely watch their child or a spouse who is home, who gets up at night…I wonder, what am I doing wrong that I frigging hate diabetes SOOOOOOO much. I know “it  is what it is” I know “it could be worse” I know that it has brought us some amazing people and experiences, I know it has brought my family and I and my spouse and I closer, but it has also torn us apart…

Matt has been chosen as the Rhode Island delegate for JDRF’s Children’s Congress, and this July he will be there with 150 other Type 1 kids to advocate for continued funding for research..I have been wracking my brain trying to figure out how to get congress to see what life can be like at times…I almost wanted to video tape my son crying last night, saying he is sick of diabetes, that he isn’t sure he wants to pump any more. I want to tell them that after 2 days of bouncy houses and parties and trampolines, his little body was BEAT..between the constant lows and the recovery highs…and I want them to know all I can think is, “I let him be a kid this weekend, and what price will HE have to pay someday for that” ? But, will that really make them understand how bad we need a cure?

I am so proud of my son, and he is so strong and brave. He has done and faced so much in his short little life, so maybe congress should see this amazing confident little boy, who has faced more adversity in 9 years than most face in a lifetime…maybe they should remember this strong, beautiful, well spoken tiny advocate…and not this crazed, sleep deprived, overwhelmed mom who can’t save her child from this monster named Type 1 diabetes…

I need to find the hope again, I need to teach him to grasp life by the horns and hold on for a wild ride! I know we have T1D for a reason, I haven’t found it yet, but it is there…I believe we will bring about change, because we will not lie down and take it. Diabetes can be a terrible thing, it rears it’s ugly head always at the wrong times, but I cannot continue to let it beat me down, and more importantly for Matt..I need to find the light for him, to guide his way through this crazy life! I am vowing here and now to be positive, to find the funny again…

I want to sahre this very personal letter with you, I found it on-line somewhere, I think, shortly after he was diagnosed, and I tweaked it for him:

Dear Matthew,

If you think the world is collapsing because you have diabetes, I cannot answer that feeling as if I had it because I don’t.  But, I can tell you that the choices you make and the daily battles you have inspire me to try to change this world, for you. You amaze me with your drive to get back to what it was like when you did not have this disease. That drive that causes you to do what you can to feel good so you can face another day. Don’t ever let anyone compare your disease to anyone else’s because everyone has to face what they have.

I don’t have it, but if giving it to me would have stopped you from getting it; I would take it in an instant, because you mean that much to me. Please do not ever give up on yourself. I have the faith that you can change the world with a loud bang or with a steady and quiet approach. The change can be as big as changing the world around you or just living a life that has you in the best control because you will feel better.

We, who do not have it, will never completely understand what it is like to have it,  but because we watch you; we do know the desire to take it on ourselves. Why? Because we love you. You are everything to us as parents. You are our hero. We know we can be a pain to each other sometimes; we could do that even without diabetes!  But we just want you to remember that when it just gets too much sometimes; we will always be here to hold you and encourage you and look for that one day that our work has paid off and your diabetes has been reversed.

I swear to you; we will only stop—when you can.

Love forever,

Mom and Dad