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.
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!!
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.”
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…
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” ….
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!
That is all I need, just 5 stinking minutes. It may be hard to see some days, but I really do try to see the glass half full. I do. But, this is getting a bit ridiculous! People say “God only gives you what you can handle”. Well, He must have me confused with someone else, because I AM AT MY END!!!!!
I will be honest, it’s not really that I can’t handle it, I can. Clearly, I have to. It is not an option to give up, or to lay down and say “I’m done”. The truth is that I DON”T WANT TO HANDLE IT!!!!!!!!! I would love to have a kicking, screaming tantrum at the feet of God. Now that would be fun.
Okay, I can hear your thoughts “Good God, what IS she talking about??” ( I know, sorry). So anyway, Here it is:
This weekend, my husband and I will be renewing our wedding vows. 12 years ago, as we stood in a church saying “for better or worse”, we could not have imagine how much our marriage would be tested so soon. We were 2 young, naive, kids eager to start our lives together. We did everything right, we paid off our debt, we bought a house, we each had a career and wanted desperately to have children ( okay I was desperate, and he was willing : ) ) Anyway, it wasn’t as easy as we thought it would be, but fast forward. We had twins. They tried to come at 28 weeks, but we stopped them. Then 12 weeks of bed rest, (6 in the hospital), and they were here, and they were healthy. Only 7 days in the NICU. We thought we had dodged the bullet then, and I guess we did; but now I am thinking maybe it was a boomerang because it sure did come back to hit us hard!!
So, now we have 4 kids 8 and under, so obviously we have had our share of sicknesses and ED visits, but in 2010 the shit really hit the fan. But, let’s be completely honest here, all the stuff that happened was benign (pun intended) I know a couple of people who have children fighting cancer and well, there are no words for what they go through.
That being said, the last 2 years have SUCKED. First it was my 3-year-old with a Staph infection so bad her airway was almost compromised…4 days in the hospital, then surgery for her, Diabetes for Matt, then seizures for Gavin and now Celiac.
I am SO sick of people telling me how strong I am! NEWS FLASH: I AM NOT!!!!! I wake up daily wishing God thought I was weak! One time when Matt had his diagnosis some one said “If you took all the problems in the world and put them in a big pile, you would take yours back”. Uh, no…I would hide Diabetes at the bottom so no one else would get it either and I would take the friggen dead cat!!
So life throws us this crap, God or not…I can’t decide…but if He is there, I dare Him…just give me 5 minutes. I have a lot to say, and lots of questions. Who’s with me?? Maybe if we start a posse, He will listen!!!!