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

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Any Type 1 Parent’s greatest Fear…

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I have taken a break from my blog over the last few months as my son has stopped feeling his lows, and we have started a journey to get him a diabetic alert dog, so between never sleeping as to diligently test him throughout the night for fear that he will not wake up from a low and trying to plan fundraisers, there has just been so little extra time! But this is a blog that I want to share, not only to help those of you who don’t live with Type 1 to understand my greatest fear, but also to educate those of you who do live with Type 1 on the importance of being prepared, and to you, my EMS friends, to please educate yourselves and others you work with about the importance of emergency LIFESAVING treatment for Type 1 Diabetes! Get your tissues…this is a tough one to get through! This little girls, friend, her mom and her dog saved her life that night…She is an amazing young lady with an unfathomable drive and desire to just dance, literally and figuratively! What an inspiration! As I have said before…Diabetes WILL NOT WIN, it cannot keep our babies down…they possess a strength in them that most people will never experience, it is such a gift to watch these kids live their lives with such a passion that only those who have looked death in the eye and said “back off. I am not done yet!” can possess. I can only hope that Matthew’s dog will never have to do this, but I am so grateful that we have been blessed with the support we have to help us get his D.A.D., that if this ever happens to Matt, he will have his furry guardian angel by his side!

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I am going to just write…I can’t edit right now, I just need to write and get it out there for now.  so please excuse the mess…Editing will come at a later date.  For now, just to get through, I must just write and let it be…my darkest fear, and worst reality just came full circle.  i am sharing a very sensitive part of my life, in hopes to at least reach one person who needs to read this.  This is me…raw.

The single worst moment of my life.  It’s easy.  I can pin-point that moment down to the day, hour, even.  I have thought and thought and thought about this moment this past week, images ingrained on my brain now and they continue to flash across my eyes at any given moment of the day taking me by surprise…holding me prisoner at the same time.  I have sat down…

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The late night Blanket Cocoon…

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Seriously I have to laugh every night when I go to check blood sugar and see my child wrapped up like a friggen mummy in his blanket!  I have several techniques for finding a hand, but sometimes when he is low, he gets super human strength, and he pulls his hand away and wraps up tighter! He actually lies on his comforter and wraps himself up in the fetal position usually with both hands clasped between his knees! And it cracks me up because I look over at his twin in his bed and he is laying flat-out, half-naked blankets barely covering his feet…it would be so easy to check his BG!

Last night it took 4…yes FOUR tries to actually get blood from him!  I pulled the hand from under his cheek, wiped off drool, click…not enough blood. Crap. By the time my weary eyes focused enough out of the glare of the flashlight in my mouth (I am also drooling by this point) to get a new strip in the meter, he has moved, wrapped up again, this time both hands between his thighs…so I try to wrestle his super-human strength to get one hand out so I can see and prick it to get blood..click…crap, he pulled away, no blood. Hands back crushed between his knees. Okay, fine. Game on boy. I decide to go in from the bottom. I uncover his feet and can just see the tips of his fingers, I try to get into his cocoon and I finally get a finger..click…yes! Blood. But shit…it took me so long to get in here, the meter timed out. FINE. Okay, new strip again. And of course, he has now turned again, wrapping even tighter in his blanket. So this time, I get in the bed, straddled over him, lancer in hand, flashlight in mouth…get a finger, click. Finally got blood…blood sugar in range…. Phew. At least I don’t have to do this again (until tomorrow night)!

I  seriously thank God he didn’t wake up to find a crazed, bed-head ridden, sleep-deprived, drooling  maniac with a lancer and a glaring flashlight straddled  above him at 2am…those are the things nightmares are made of…maybe I will just put a therapist on retainer now…chances are either him or I will need it someday!!

Angels among us…

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I felt the compelling need to blog about what happened last Friday. Like the rest of you, I am heart sick.

First, I want to say I feel so much pain for the parents, siblings and families of the victims, I cannot even fathom the pain and grief that they are feeling.  I don’t think that there is anything that can be said or done to ease that for them. What makes me sad is that this, like all tragedies do, is turning into politics.

I truly believe politics and religion have no place in our discussions about this…none of us share the exact same experiences or beliefs. And I feel  personal agendas should be put aside and we should allow these families time to greive.  That being said, in my opinion, the issue at hand is not school safety or gun control. That school was locked, they had a good lock down policy it seems, but evil will always find a way in, as did this gun man. Sure we could take away all access to guns and put bars and alarms on all the windows and doors, but evil will just find another medium.

So what do we do? As a mother and a social worker, I chose to speak to my children about what happened. Sure, I would prefer to preserve their innocence and keep them safe from having to think about such things, but reality is, bad people do exist.   And I feel my children need to know that and be prepared to keep themselves safe. We don’t dwell on it, we tell them it exists and we end with telling them there is more good than bad in the world. And i believe that is true. But, as we grow, and watch the news, it doesn’t always seem true. So here is what I think:

Forget gun control and school policy, how about we change what deserves a spot on the nightly news. What if we were able to change the media’s approach to bad things. Sure we need to know about that stuff, it affects us and our safety, but how about we make that the unusual..think of how good you feel when the news ends on a good note, like the Cop that bought shoes for the homeless guy, imagine a world in which we could hear about all the angels among us each day! Be honest, does it not inspire you to do something good when someone does for you? When the story about the football player who spent thousands of dollars on Christmas for kids he doesn’t even know aired, did you not want to go buy a gift and throw it in the box at Toys R Us?

Kindness spreads like wildfire…If we can teach our children that kindness is the norm, and while bad people, and people who hurt others do exist, they are not the norm. There are more people out there who would help you rather than hurt you, if our children could see on a daily basis the amazing things that people do for one another it might become their nature.

Remember that movie Pay it Forward? How awesome would it be, if out of this amazing tragedy came so much good that it overwhelmed us, imagine how healing that would be for the families who lost their angels in Connecticut last Friday, to see that this tragedy brought about more good than this country has seen in many decades? Imagine leaving those evil-doers the message that we will not give them another thought, they will be forgotten, their names will not be in the history books, what we will remember and carry on are those who do good and those people who make a positive difference in the world. Idealist? Maybe, but what if???

I say we start an action, I challenge each of you who reads this today, go do something kind for someone else, or tell others about something kind that you saw. You don’t have to spend money or even a lot of time.  Call and old friend, make up an old grudge, call a family member you have had a falling out with;  Hold a door for someone, buy  a stranger a coffee…let’s carry on the innocent happiness and unconditional love that those children can no longer give. Let’s get back to family values and morality…forget politics, forget gun control, don’t force God on people, let them find Him themselves…Just do what my mother always said…”BE NICE.”

How did I end up here?

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It’s been a few weeks now, but I had a totally weird day. It started off with Matt waking up at 77.  People always ask me why I check at night. Here is why:  Matt went to bed at 180, a little above his target of 150, but still okay;  12:30 he was 143; I think…awesome, I am so freaking tired, no 2:30 am check…I am going to sleep.  6am, 77. Dex shows he neared 50 while I slept. Insert horrible, terrifying guilt. This is why I check religiously at 11am and 2am!!  So at 77, he is a crank-pot. Doesn’t want to eat, blah, blah, blah…I finally get him on the bus, insert crazy anxiety until the Nurse checks him at 8:30.  One and a half hours after he gets on the bus,  He’s 261. Figures.

Anyhow, It was the first day that I was able to volunteer in the boys’ classroom this year. Third grade math centers…the thought made me shutter. What if they actually needed my help? Would I actually know the answers?? For goodness sake, I had to google fact families in second grade math!!!  What makes me think I can handle thrid grade??  So , I get in there, knowing his last check is 261 and I am thinking…he looks low, but he was just 261….then a cheeky little 8-year-old says “what does congruent mean?”  Ummmm????? Shit.  How the hell do I know?? I haven’t slept in 8 years!!!!

So the hour goes by without me screwing up some kid’s future in math and I didn’t get ask NOT to come back, but I look at Matty…uh oh. ” I feel Low” he says. Yup. 54.  Okay, so I go to get a juice from the classroom emergency kit. EMPTY. really? So I go in the classroom fanny pack. No juice…no fruit snacks, only 4 tabs. Seriously??? Now I am stressed and PISSED.  SO I run to my car, closer than the Nurses office, and dig through the disgusting mess that is my minivan ( I am not really worried, because if i don’t have juice, I know for sure there are skittles under one of the car seats …) But alas, i find juice…deal with the low and then go to the office…what happened is a whole other blog post….but the point is..how did I get here??? From making my own baby food..mashing organic bananas and making meatballs with organic ground turkey, baby oatmeal and ground mixed veggies (yuck…smelled like cat food by the way!) to being terrified and angry that there is no juice boxes or candy within reach??? Standing in the grocery store aisles aggravated that all the juice boxes have only 8 grams of carbs instead of 16 which is what Matt really needs to recover from a low…( no way he will drink 2 juice boxes!!)  How did I get to standing in the kitchen with my son before bed with a blood sugar of 40, begging him to have sugar, and him saying, “but I already brushed my teeth!” and me saying, “Oh, honey, it’s okay eat candy”???? It is like some weird and alternate universe…

Seriously dude…

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BACK THE FUCK OFF. Okay, so sorry, this is really not directed at any one person…I know people want to help; But if I hear one more time how “all this auto-immune stuff” is caused by what I fed my kids, I might lose it. I don’t really feel like venting right now. If you have followed me at all, you know that I do that quite often :). So for now, I am going to stand on the proverbial soap box:

When you hear that someone has had a child in their life diagnosed with a chronic, or terminal disease for that matter…DON”T SPEAK. Give them a hug, cry with them, tell them how sorry you are. But don’t, DO NOT, try to find something comforting to say. There is nothing to say. Accept it. move on.It is okay to not say a blinking thing.

As most of you know, my 6-year-old was recently diagnosed with Celiac Disease. Yes, the food is widely available, yes, it is not as bad as diabetes (diabetes wasn’t as bad as cancer). I get it. But, please, for the love of all that is Holy; DO NOT TELL THE PARENTS ABOUT THE LINK BETWEEN PROCESSED FOODS AND CELIAC, or celiac and other auto-immune disorders. They know. trust me, they did more reading and research in the first few days after diagnosis than you have done UNLESS you are living it.

Yes, I fed my kids Kraft mac and cheese from a box and they eat cocoa puffs. I admit it. BUT, they were also exclusively breast-fed for at least 18 months each, and I made my own baby food. My husband and I made the choice for me to be a stay at home mom. He has a good job at a decent company, but we cannot afford to shop at Trader Joes and Whole Foods or even the organic section at Shaw’s. So yes, I chose a college fund over Annie’s organic mac and cheese. So there it is. Parents of chronically ill kids have enough guilt. They don’t need to be made to feel like it is their fault their kids have auto-immune diseases. They already think that from time to time. Trust me.

So, what is my point? My point is, we don’t know what causes all of this crap, if we knew there would be a cure.   Just support your family and friends, let the smart pHd’s who are toiling in the labs worry about who or what caused diabetes, Celiac, autism, Addison’s, vitiligo, etc.

So if you have tried to help someone by stating something you read ( I have) It’s okay. Don’t feel bad, I am not angry at anyone. Just know that me and all the other Type 1 and Celiac parents in the world have the right to just say BACK THE FUCK OFF, just as I would expect you to if I told you you caused your child’s lisp becuase you ate raw sushi while you were trying to get pregnant, or whatever.

Okay, I am stepping down from the soap box and over to the fridge for a nice cold beer. (oh ya, did I mention I drink beer while I wait for my kids bus??)

Stay tuned for my next vent…a rendition of Cee lo Green’s “forget you”  ….

I was thinking…

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What would it be like to have one day where we just say what is on our minds? Regardless of what is expected or socially acceptable?  I mean if we can have “national speak like a pirate day” what the hell, why not “say whatever the hell you are thinking day“?? Last January I seriously considered for my New Year’s resolution posting for my Facebook status all my self defeating, negative, socially unacceptable behaviors, you know in response to all those idiots who post their work outs ( no offense, some of those people are people I love very much, but it still pisses me off). My initial post would be “In an effort to assist all my facebook friends who get an ego-boost out of letting the rest of us facebookies know that they ate a healthy breakfast of raw eggs and tree bark and then ran 12 miles all before 6am, I will from here on out (or until everyone un-friends me) post all of my self-defeating negative behaviors and dietary choices” There after it would be posts like, “after sleeping for two, 3 hour bouts last night I woke up barely in time to make the kids poptarts and throw them on the bus without brushing their hair or teeth” and “this morning I ate  a power breakfast of  mostly raw brownies and 4 cups of coffee“.  Then I would go out to the bus in my ugly fleece robe (okay, I do that anyway) and tell the bus driver that he is a cranky old idiot who has no right working with children.

Imagine the look on people’s face when they say “How is Matt feeling? Is he stable yet?” when I would say ” Actually, we are great, he is now up to 7500 blood sugar checks in just 2 years and his high for today was 416 and the low was 37. Oh and I pricked his finger 4 times last night while he was sleeping because twice there was not enough blood for the damn strip and I could barely see because I haven’t slept more that 3 hours at a time in 2 years“.  Or when the register girl at Walmart says “How are you? ” and I say, “Well, shitty considering I had to explain to my 4-year-old for the 75th time, that Matt’s Diabetes will never go away, and that until we find a cure, which the FDA will probably delay anyway, her big brother will have to wear a pump and get insulin and check his blood sugar for the rest of his life.”

Or, How about when you are sitting at a playground with a bunch of new mom’s and one is complaining about how Johnny has to get his flu shot tomorrow and how much she hates needles and how it makes her sick to see them? Come on admit it, wouldn’t it be fun to make your type 1 kid eat a snack just so you could pull out the syringe right there in front of her, hold it up, tap the air out and plunge it into your kids bicep??

Okay, okay…maybe I am being a bit harsh, but come on, admit that it would be fun to look “that” person right in the eye and tell them to “SHUT THE HELL UP!”

Maybe I will call Hallmark…we can make it a national holiday!