Large’s true passion is the stage. Here he is singing, “I’m Really Just A Sensitive Guy” from How I Became A Pirate.
Large’s true passion is the stage. Here he is singing, “I’m Really Just A Sensitive Guy” from How I Became A Pirate.
Here is a movie that my budding director made of himself and his little brother, “Small”.
My oldest son, “Large”, has surpassed me on the technology highway (and that is really scary since I work in IT and he is only twelve!) He is helping me figure out how to post pictures and videos to my blog. So here is a video of him singing in a barbershop quartet recently. He is the shorty on the far left, the tenor.
I don’t wear make-up. Well, I wear a little bit, out of necessity, because I am getting old. I wear a light coat of mineral foundation (probably too light to even make a difference) and a smidge of bronzer across my checks and nose, and some kind of lip tint or gloss. That’s it. I never have liked wearing make-up, (although I was that teenager who fought my parents tooth and nail to wear it, and then never did. I did that with a lot of things. What a pain in the ass I was!)
So if I barely wear any make-up, you can guess how quickly I go through it. Not very. Did you know that make-up has an expiration date? It does, and I had exceeded mine so I stopped by Ulta the other day to replace it. I naively thought this would be a simple task, an in-and-out kind of trip. I was wrong.
First of all, it has been so long since I bought foundation that the brand I use doesn’t name the colors the same anymore so I was at a loss as to which is the color that I need. So I asked a sales girl for a little guidance. An innocent enough request, right? Wrong again. The golden-haired make-up maidens that work at these places take their work very seriously and they don’t take kindly to us “occasional users”. Crystal was on to me right away. She knew that if it had been that long since I bought new foundation, what kind of shape must my brushes be in? Her suspicions were validated when she asked me how often I clean my brushes, and I replied, “Clean them?” New brushes in hand, I blindly followed her to another isle while she asked me what I use for a primer. Primer? Are we talking about my make-up habits or painting a house? The look on my face gave Crystal the answer she needed and the next thing I know I have a $40 bottle of un-wrinkle primer in my hand. Feeling very out of my element here and trying desperately to dig out of the hole of shame I have dug for myself, I did what I always do when I am uncomfortable, turn to humor. I joked with Crystal that the only reason I even use the mineral foundation that I use is that the infomercial said it was so natural you could sleep in it. Well, that did it. Not only was Crystal horrified (I thought I was going to have to start CPR on her), now I have caught the attention of another sales girl nearby whose eyes grew as big as saucers when I said that. Crystal takes a deep breath and says to me, with one hand over her heart, “Are you telling me you don’t take your make-up off at night?” I am thinking in my head, “lady, I barely get the stuff on my face everyday, I sure as hell don’t have time to take it off, too!” I just smile at her and pray that a huge hole opens up beneath me and sucks me under or that some other poor woman is having an eye shadow emergency in the next isle over, or, at the very least, my cell phone rings. Something to get me out of here. Nothing. So Crystal hands me a $17 tube of waterless cleanser that my lazy-ass can put on my night stand and says to me, and I kid you not, “My heart hurts to hear that you don’t take your make-up off.” Honest to God, she said that.
Now I have never been good at math, but a quick calculation tells me that the cost of the arsenal of gear I now have in my arms is going to send my husband into orbit, but what was I supposed to do? Crystal’s heart hurts. I don’t want to go through life knowing that someone’s heart hurts because of me. So I thank her for setting me straight and getting me on the path to cleaner, healthier skin and I run to the check-out counter. And I can rest easier knowing that one less make-up maiden has a wounded heart. Because what she doesn’t know, won’t hurt her. (Come on, you don’t really think I am going to start taking my make-up off, do you?)
One of the more frustrating things about diabetes is learning how to do things all over again. It really is like a rebirth. The moment your child is diagnosed is when they are reborn. You spend a couple of days in the hospital, and then they send you home with your new child. Those first few days in the hospital are filled with adrenaline and exhaustion and family and friends are calling and visiting and you aren’t really thinking about how daunting the next few weeks are going to be, you are just focused on learning what you need to know to go home (changing a diaper and how much formula to give or giving your child an insulin injection and how many carbs they can eat). Then you get home with your child and you and your spouse look at each other, like, “I can’t believe they just sent us home with him. We don’t know what we are doing. How are we going to keep him alive?” Then you spend the next several weeks or months getting up several times overnight to check your child and sometimes feed him. And the interior decor of your home has drastically changed. Now you have diapers, wipes, bottles and pacifiers stashed in every room (or you have glucometers, insulin pens, alcohol wipes and glucose tabs strategically placed in every room). Now it’s been a few days and you are feeling brave and ready to leave the house. You know the drill, pack a bag. All of those supplies that you have in every room in the house, now have to be portable as well and go everywhere you go.
Your new life with your “newborn” is full of firsts. First time she rolls over, first smile, first time he sleeps through the night. Or, for your reborn diabetic child, first time you let her to go to a friend’s house without you, first time going to the movies (how many carbs does movie theatre popcorn have, and exactly how many pieces of popcorn is in a cup?), and the first time you let him sleep all night without checking his blood sugar. First time parents (of newborns and reborns) have so many questions and are so uncertain of their abilities to care for their child. There is a reason that we talk about how valuable experience is. Because it is. I remember with each passing week when Medium was a baby that I gained more confidence in myself as a mother and trusted my ability to care for him more. It has been the same with his rebirth. It has been 6 weeks since diagnosis and I can’t believe how much I have relaxed about his care. I spent the last 6 weeks feeling like I was running around with a 10-foot tall stack of porcelain plates in each hand and I had to keep a perfect balance between my right hand (blood sugars being too low) and my left hand (blood sugars being too high) and my arms were getting really, really tired and holding on to all of those plates paralyzed me from being able to do anything else but worry about letting the plates get out of balance or, worse, dropping them all. But six weeks of experience taught me that Medium would be okay if the stacks weren’t perfectly balanced all the time. So I set the plates down and now my arms are free to do more important things, like giving Medium a much-deserved hug for being such a rock-star!
I need them to prop my eyelids open. WARNING: I am writing on a post-night shift hangover so who knows what I will say. I don’t usually work night shifts anymore in my new job in IT, but a couple of times a year when we are upgrading or installing a new application we have to round at the hospitals and this month is one of those times. I have a couple more night shifts coming up in the next few weeks and I am dreading them. But, there is one good thing about working the night shift now . I got to sleep today (for a few hours anyway) without worrying about Medium and what his blood sugars were doing while he was sleeping, because he was at school. It was wonderful (well, as wonderful as sleeping during the day after you’ve been up for over 24 hours can be). I mean, I still worried about him last night while he was sleeping and I was working, especially since Brian (my husband) kinda overdosed him on his Novolog at dinner. Not really his fault. The basketball team had their end of season party at a pizza place that had no nutritional information available. So Brian just had to make his best guess at the carb count in a slice of pizza. I mean, cheese pizza at one place is probably pretty much the same as cheese pizza at another place, right? Sure, if the crusts are the same, and if one sauce doesn’t have a lot more sugar in it than another, and if the serving sizes are the same…….you can see what a pain it is and how easily it might be to give your child a little too much insulin at a meal. Which is apparently what happened because about an hour and a half after dinner his BG was 56. Oops. Thank God, Medium likes to eat. He is always more than happy to eat the peanut butter crackers or applesauce that we are constantly throwing at him when he is low, even at 3:00 in the morning. God I love that kid.
Because I worked last night I was asleep this morning before he got up and didn’t get a chance to remind him that he has Chess Club after school today. This is the first time since diagnosis that he will be staying after school for something and I want him to check his BG right after school so that if he is low he can get a snack from his stash in the nurses office. The nurse leaves around 4:00 and I am afraid that if he feels low at 4:15 he won’t have access to his glucometer and snacks. So I am thinking to myself, no biggie, I will just call my new BFF, the school nurse, and explain this to her and she will take care of it. Here is how it actually went down.
ME: “Oh, hi, this is Medium’s mom, I was just calling to talk to Carrie.”
SCHOOL: “She’s not here today, but there is a substitute nurse, would you like to talk to her?”
ME: (in my head) “No, no I would not. I would like to talk to my new BFF, Carrie. The one who has spent hours going over Medium’s diabetes plan with me, the one with whom I have exchanged countless emails and phone calls with about his BG’s, the one who has lessened my fears, seen me cry and even cried with me. No I do not want to talk to the substitute nurse. That’s the thing about BFF’s, THERE IS NO SUBSTITUTE!
ME: (out loud) “Sure!”
SUBSTITUTE NURSE: “Hi, this is Carol.”
ME: (in my head) “Hi Carol, you don’t know me, but my child’s life has been in your hands all day and now I am going to ask you to go above and beyond your school day duties and make sure my son is ok after school, too. How do you like them apples?”
ME: (out loud) “Hi, I am Medium’s mom and I forgot to remind that he has chess club after school and that he should come check his BG right after school and have snack if he needs it, because I don’t know what time you leave and I don’t want him to go low and then not be able to get to his snacks.”
SUBSTITUTE NURSE: “Okay. I leave at 4:00. His BG was 114 at 2:30 and we gave him a 25 carb snack.”
ME: “Oh, well then maybe he won’t need to check, but I just never know these days, you know, he is newly diagnosed and he can be all over the place with his sugars and since I didn’t get to talk to him this morning…..”
SUBSTITUTE NURSE: (cutting me off) “So do you want him to come check or not?”
ME: “Yes, have him check, please. Thank you.”
Needless to say, Substitute nurse is NOT my new BFF. And, needless to say, I will be parked right outside the school doors during Chess Club, just in case Medium needs me because I can’t trust that substitute nurse got it right. Because that is my job, as his mother…..and his pancreas.
As is commonly the case when dealing with diabetics, especially newly diagnosed children with diabetes, today got totally derailed. First of all I forgot that my husband had to leave early today and he usually does the morning routine at our house (yes, I know, he is a saint, blah, blah, blah). You know, that brings up another thing that irritates me (referring back to my Ground Rules and Disclaimers post). My husband wakes up early. Always has, always will. He tries to sleep in, but he just can’t. It’s his natural circadian rhythm. I am a night owl and loathe, LOATHE, getting out of bed in the morning. So this works for our family. But I get so tired of people thinking that he is a saint, and I am some kind of slacker, loser who is so LUCKY to be married to him. I mean, I am lucky to be married to him, for lots of reasons, and although we have been through some rough times, I love him. But why should he get some kind of award because he gets up in the morning and takes care of HIS kids? What, is this 1952? Oh, and you know what else? He does laundry, and dishes, too. And, most of the cooking falls in his department (although microwaving hot dogs and making Bosco sticks in the toaster oven isn’t EXACTLY cooking, but I will take it). (Neither of us is very good at cleaning. I “pick up” a lot and clean toilets daily, but the rest of the house…..well, just don’t come over unannounced please). But do you know why he does all of this? BECAUSE THIS IS HIS HOUSE AND HIS FAMILY, TOO, AND WE BOTH WORK FULL-TIME AND I DO A MILLION OTHER THINGS THAT HE CAN’T BEGIN TO ACCOMPLISH BECAUSE THEY ARE NOT HIS STRENGTHS!!!!! Housework is not my strength and he complains about the way I do laundry. So, I pay all the bills, go through all the mail and kids backpacks, schedule everyone’s appointments, make sure everyone has their permission slips for field trips and are signed up for soccer and have their order forms for school picture day, make sure to refill everyone’s prescriptions, keep in contact with all 3 kids’ teachers about their grades, homework and projects, check-in with the diabetes educators and talk to the school nurse several times a day, etc., etc., etc., and he does the household chores. That is what works for us. GET OVER IT EVERYONE! Now, all that being said, I AM very thankful that he realizes that he should take some of the responsibility in keeping this household running, as I know that some husbands still think it is 1952 and that their wives should do it all. But this is the bain of my existence, of most women I’m sure. No matter how hard I try to “do it all” I just can’t. And all I want is for someone to acknowledge what I do get done and appreciate me for it.
WOW! I really needed to get that off my chest. Whew, now where was I? Oh yes, my day got derailed (much like this post just did)! So my husband left early and I had already let my exhausted self sleep a little more this morning so now I was going to be late to work since I had to take care of Medium and all of his medical issues this morning. I needed to jump in the shower, but instead I had to go downstairs and count carbs and stab my child with a needle. Then stalk him to make sure he ate all of his breakfast and then have him wash it down with his ADHD medicine (oh yeah, did I mention that along with having T1D, Medium also has ADHD. He was diagnosed the summer before first grade and we tried everything we could to keep him off medication but nothing worked and we started him on meds three years ago. I HATE, HATE, HATE him on his ADHD meds and we have tried different meds and doses over the years, but the fact is, that he needs them. With them he is a self-controlled, respectful, straight A student (albeit without any personality-the part I HATE), without the meds he is an out-of-control, flight of ideas, jibber jabberer who makes impulsive decisions and disrupts his classroom. The idea is that he will learn what self-contol feels like on the meds so that one day, we will be able to take away the meds and he will still be able to control himself. Yeah, that’s the idea. I don’t buy it.) Anyway, back to the derailment of my day. Of course he misses the bus so I have to take him to school and of course he is late so I have to park and walk him inside. But that’s okay, it gives me a chance to say hello to my new best friend, the school nurse. Now I am late to work. Ugh. I manage a couple of hours of work before I get an email from my new BFF, the school nurse. “Medium’s blood sugar is 310”. Whoa! We haven’t been in the 300’s since right after diagnosis. This information along with the fact that he told me he was super thirsty when I checked him at 3 a.m. had me a little worried and I thought it best that we check his ketones. But of course we don’t have ketostix (the strips you use to test for ketones) at school. So I left work, drove home to get the ketostix and went back up to see my new BFF, the school nurse. Medium peed in a cup, I dipped the stick in, and 30 seconds later, ta-da, no ketones. Big sigh of relief. My boss let me work from home for the rest of the day instead of driving the 30 minutes back to the office. I was able to work in peace and quiet all afternoon and get my day back on track…..until the next curve ball anyway.
Ok, so I have posted 3 entries and have discovered a few things that are nagging at me to get out. My writing has gotten me into trouble in the past and that makes me sad and unhappy because my intention is to entertain people while releasing some stress of my own. And we have all heard the saying, “if mama ain’t happy, ain’t nobody happy” so I need to set some blogging ground rules (plus, I just like rules, ask my kids).
First of all, it gets really old typing “type1 diabetes” all the time, so I will abbreviate it to T1D. Also, it has been brought to my attention that in the interest of privacy, it might be best to not put the full identity of my children on this blog. So when I write about them I will refer to them as “Small”, “Medium” and “Large” because that’s what I call them at home since I can’t ever get their names straight. Small is my 5 year-old, Medium is my 10 year-old and Large is my 12 year-old.
Second, I want to make sure I am not misunderstood. I am a person who uses humor to express herself. Sometimes people misunderstand my humor. Let me set the record straight. I do not think diabetes is funny, at all. I do not take my responsibilities as a mother of a diabetic child lightly, and I don’t ever want anyone to take the flip comments I might make from time to time about diabetes, or the medical community as the law. Sometimes I get irritated and writing is my outlet. Let me vent.
Thirdly, I often talk about my kids in a way which some people might think I don’t even like them. Rest assured, I love my children, but they irritate me sometimes (as does my husband, but that is another post all together)! But I will let you in on a little secret….come closer….closer….closer, ok……I am human and I have flaws, GASP! Yeah, that’s right, I get irritated, a lot actually. By my kids, my husband, my mother, my sisters and brother, my coworkers, the mailman, the lady in front of me in the check-out line at the grocery store who has 17 million coupons and a Zip-loc baggie full of coins, people who park so crappy in their parking spot that no one can park next to them, people who yell at their kids in public, (oh wait, I do that), people who litter, people who try to talk to me in public restrooms (hello people, I am urinating here! This is not Tammy’s Tea Time! Stop talking to me while I am wiping!) oh the list goes on and on and on….but, in the words of beloved golden girl, Sophia Petrillo, I digress. Truth be told, I have to keep myself in check because I worry that I will come off as an annoying bragger of my brilliant, amazingly talented, gorgeous children, so I pick on them sometimes to offset the bragging. (Smile) But I promise you, I would step in front of a speeding bus for them, so don’t get too worked up about the way I blog about them.
Forthly, sometimes I write words or phrases that are not grammatically correct, again, this is for humor. I promise you, I did graduate high school (college too)!
While this is mainly a blog about my life as a mother of a child with T1D (if you didn’t skip ahead to the end you know what that stands for), sometimes I will post things that have nothing to do with diabetes. Because even though we have only been dealing with this for a short time, I can tell you I already know how important it will be to my sanity to take a break from diabetes from time to time (ha, that’s funny, because there is no break from diabetes, EVER. That’s one of the things that sucks the most about it). But I have 2 other kids and other interesting and funny things to talk about, so I will.
Sometimes I will talk about escaping the stresses of my life through drugs and alcohol (nothing major, just like beer and Xanax). Again, this is for humor, I am not an alcoholic or a drug addict (not that there is anything wrong with that….)
Okay, I think I am getting sidetracked again. I guess what I am trying to say here is, this is my blog and I can say whatever I want. No, wait. Let me try that again. I am just a woman who is doing the best I can at managing my crazy, busy life. It ain’t perfect, and it ain’t pretty, but it is the best I can do. And if anything that I write in this blog, in an effort to vent my feelings, offends you, then stop reading my blog!
After re-reading my last post (something you should probably do before you hit the “publish” button), it occurred to me that I got a little to carried away with the heavy, technical nitty gritty of type 1 diabetes that I didn’t really explain the title of the post very well. And thus was born…..Lesson #1, Part 2.
When I said that type 1 diabetes had nothing to do with sugar, that was kind of not true. Clearly if you actually read the post, you would know that I talked a lot about sugar and type 1. So I left out a few words, sue me. What I meant to say was, getting type 1 has nothing to do with eating too much sugar. To recap our lesson from yesterday boys and girls, type 1 diabetes happens when your body doesn’t produce insulin anymore and insulin is the hormone that carries sugar from your blood to your cells (not just sugar from sweets, remember carbohydrates turn into sugar–and don’t think you can fool diabetes by not eating any sugar or carbohydrates because your body needs carbs for fuel–remember? If your body doesn’t have carbs for fuel it will burn fat and then you will get ketones–toxic acids– and then you will go into DKA…..is any of this ringing a bell?) And this happens when your body decides to attack itself (autoimmune response) because you are genetically predisposed to this. *An interesting side note here….there is a blood test that will tell you if you have the antibodies specific to type 1 present in your body. If you do, you either already have, or are likely to develop, type 1 diabetes. Hmmmm, should you get tested???? I suppose you could if you really wanted, but if you don’t have someone in your family who has it then you are probably at low risk. But what if you do have someone in your family who has it, say for example, your son, and you have 2 other children….(enter foreboding music)? The answer to that question is for another post. It will be called, “To Test For Antibodies, or Not to Test For Antibodies, That Is The Question”. (See, I’ve got you hooked now, it’s killing you not knowing when that post will be published (enter evil laugh). But back to this post…..
So, what I am trying to say here (I get sidetracked easily) is this; Medium, (or anyone with type 1 diabetes) did not give himself diabetes by eating too much sugar (he did give himself dental carries and the occasional tummy ache and his mother the occasional headache from all the begging and whining) from eating too much sugar, but NOTHING he did or ate caused this to happen. To keep it simple stupid, it was a naughty immune system and crappy luck that caused Medium to develop diabetes.
Admittedly I have become somewhat of an expert in the field of “parenting a child with type 1 diabetes”, out of necessity, of course. But it still amazes me how misunderstood type 1 is. I can’t believe how many people make comments about how Medium can’t eat sugar anymore, or how much healthier we are going to be eating now. But my personal favorite is the person who said, “Medium always did have a sweet tooth”, as if to imply that Medium did this to himself by eating too much sugar. It is hard not to get angry. I so wish that I could have prevented this somehow or that I could take it away from him or turn back the clock, but I can’t. No one can. Medium got this because he was genetically predisposed to it (his aunt has it, too). Then one day, while his immune system was busy fighting off some kind of cold/virus, it decided to also attack the islet cells that live on his pancreas and produce insulin. Type 1 (also called juvenile diabetes, but not as much anymore because adults can also get type 1) is an autoimmune disease. So, now he has hardly any islet cells left that are producing insulin. Without insulin, the carbohydrates that he eats (which turn into sugar) cannot get out of the bloodstream and into his cells where they can then be used for energy. The carbohydrates (sugars) stay in his blood and makes his blood sugar levels too high. Without sugar to use as energy, his body burns fat. As fat is burned it produces toxic acids called ketones which poison the body when present in large amounts. What happens next is bad, real bad. It is called diabetic ketoacidosis or DKA for short. DKA is a medical emergency. So, type 1 diabetics have to give themselves the insulin that their bodies do not produce. They give themselves fast-acting insulin with every meal based on how many grams of carbohydrates they are eating, (this is called a bolus) and they give themselves a slow-acting insulin once a day so they always have some insulin working in their body (this is called basal insulin). They constantly have to check their blood glucose levels to make sure they are in a safe range, because the wonderful, amazing bodies that God gave us know exactly how much insulin to produce to cover the foods we eat, but diabetics can only guess. So if a diabetic is managing his or her disease very closely, they are logging their blood sugars before and after meals and activity and logging how much insulin they are taking so they can find the right balance. And the extra fun thing about kids (*sarcasm warning*) is that as soon as you find a good balance, they have a growth spurt, or get sick or go through puberty (all things that affect blood sugar levels) and then you are back at square one, making adjustments. And a type 1 diabetic has to do this everyday, for the rest of their lives or until my prayers are answered and a cure is discovered.
Type 2 diabetes (also called non-insulin dependent or adult-onset diabetes) is very different. Type 2 diabetics still produce insulin, their bodies just do not use it correctly/efficiently, this is called insulin resistance. This is the most common form of diabetes and thus more people have heard of it and thus, thus people innocently confuse type 1 and type 2. Low activity level, poor diet and excess weight are risk factors, so in some type 2’s this was preventable. One of the biggest differences between type 1 and type 2 is that with a change in diet and exercise and lifestyle, type 2 can sometimes be curable. Type 1 has no cure. Type 2 diabetics can also sometimes manage their disease with just diet and exercise or a pill, no injections.
Whew! That was kind of long and boring. But while you are now half asleep, I feel better that I am doing my part to educate people. And after all, it’s all about me! Hee, hee. And, believe it or not, I have oh-so-much more that I could tell you about, but boring people with long-winded stories about sugar is actually my dad’s department. (Sorry dad! I just couldn’t resist! Love you!) (My dad has worked for a sugar company for more than 25 years and he likes to tell detailed stories about beets vs. cane sugar……zzzzzzz).
So if each of you would take what you learned here today and tell 2 people and then they each told 2 people, and so on and so on, then everyone in the world would understand what type 1 diabetes is and then I don’t have to get angry at anyone. Plus that would get us closer to a cure, too! Could you do that for me, please?