8/26/2014

What I Want to Really Say When I Say "I'm Fine"


     When a parent has a child diagnosed with type 1 diabetes, there is a rollercoaster of emotions, learning diabetes care, expenses, etc. What others don’t realize is that we have our own struggles that are separate from what our kids face. What we need is support and a little understanding. This is not a disease to blow-off and it is not a disease that our kids will outgrow. This is our new reality and it’s harder than you probably thought or give us credit for. We are not looking to be “victims”, but want you to understand that when you ask us “How’s it going?”, and we say “Fine.”, we are really just giving you the answer you were looking for instead of telling you this:

  • We have perpetual newborns. Diabetes care for a child means nighttime blood checks, the equivalent of the nighttime feeding(s) that babies require. Babies outgrow this though, whereas D children do not. The younger the child at diagnosis time, the more likely you are to see zombie parents. The best we can hope for is technology which allows us a modicum of blessed sleep. Then diabetes is all like "No-No-No!  No sleep for you!" The CGM (Continuous Glucose Monitor) can fail (which means a lot of us wake up anyways just to make sure its still working); it can produce false data which buzzes in the middle of the night (CGM: Hypoglycemia, take action now! Real blood glucose: Above normal non-diabetic values); or it can produce real data which requires action (up and down the stairs hour after hour to test blood, give glucose, give insulin later when sugar skyrockets from earlier glucose but hopefully not too much insulin which will mean the cycle starts all over again.)  Basically, kiss sleep goodbye. Now we’ve got to get up the next morning to go to work/school/events and somehow get our kid(s) and ourselves ready, then function at a normal level so we aren’t fired/sent home/crash the car/screw up diabetes care/forget our kids at school.  We apologize if we aren’t focused 100% on the description of your new handbag/car/job, but we were up every other hour last night.  We apologize if we can’t make it out to the bar/event/playdate, but we desperately need a nap.
 
  • We have a stress like you can’t imagine.  Our kids’ lives are literally in our hands. Diabetes for most of the population consists of older adults who manage their own care, and many of them are on little to no insulin.  Children living with Type 1 diabetes are insulin dependent from day 1. For those years we need to take care of them, it’s a guesswork game of balancing every single thing they eat to match activity levels, along with hormonal shifts, sickness, and growth. If you don’t give enough insulin to match those requirements, they end up with hyperglycemia (high blood sugar). High blood sugars are what lead to those nasty complications that you hear about, like missing limbs, kidney failure, and DKA (which can lead to coma and/or death but at the very least requires hospitalization and horrible symptoms). If you give too much insulin to match those needs, your kid can literally have a seizure, crash a car (if driving), go unconscious, slip into a coma and quite possibly die. Talk about responsibility. There is no magic formula though for all of these factors, so we guess and hope that it all works out. This is a 24/7 disease which requires us to be at the top of our game every day, all day.  There was actually a study done which showed that one-third of newly diagnosed children's parents experience PTSD. Anxiety and depression can also creep up on us. The feeling of "Oh no, did I do that right?" to "Oh no, this is never ending, and what happens when I am not around to help out". We go through bouts of pity, for ourselves and for our children. We have to mentally drag ourselves off the ground and keep reminding ourselves that this is our new normal. It will get easier, but it will never be like it was.  Some people cope with that knowledge better than others.

  • We don’t have normal relationships or outings. A lot of us live day by day, just trying to survive. We don’t have the normal date nights or vacations that many of our peers have. IF we are lucky to find a babysitter, we will probably spend at least half of the date night worrying and/or following up with that person to check on our child. It’s almost impossible to just let go and allow yourself to be in the moment. A lot of the night might consist of talking about d care or d child. It takes a conscious effort to set your mind aside from those discussions in order to allow yourself to reconnect with your spouse. A lack of babysitter options leaves even these date nights to be far and few between or non-existent.  A lot of marriages fail after a diagnosis like this, so it is extremely important for spouses to be able to reconnect as a couple instead of only parents. If they do not, there will be no remedy for the stress, which is not healthy for any relationship.  Vacations are generally more stressful for us than our home lives. You have to be sure to bring enough supplies for normal diabetes care, plus backups.  A child with an insulin pump has to have special screenings in an airport. Flying with a pump can lead to air bubbles in the tubing, so you have to disconnect your pump at takeoff and landing. You cannot check any d care items, so all of those items and backups are going in your personal bag or carryon. Going on a cruise (normal awesome) leads to anxiety about carbohydrate counts found in the various foods. Excitement can lead to high blood sugars (Disney anyone?), then there can be a rapid decrease in blood sugar leading to hypoglycemia (have you WALKED Disney anyone?).  If your child is on a CGM, you then worry about swimming, sweating, water in general (is it going to be lost in the ocean? The wave pool? Is the tape going to peel off? If tape peels off, do I have enough backup sensors for the entire trip?).  Did the insulin get too hot in this tropical paradise?  Did it get too cold in this arctic climate? Here, let me carry this diaper-like bag for the rest of my kids' childhood that carries the d-care essentials. What, you don't allow bags on a rollercoaster?  Now we've got to do a rider-swap and ride alone because there is no way I'm leaving that life-saving bag in a locker.

  • We deal with ignorance and greed that is mind-blowing. (Yes I'm talking to you Dr.(!) J. D., owner of a certain drive-in movie theater in NJ). We shouldn't have to stop and worry "Is this shopkeeper going to let my child treat his/her low blood sugar or demand that we be removed from the premises for eating/drinking or bringing our own food?" I should point out that this happens quite frequently where businesses demand no exceptions to their no outside food/drink. My child has a strict amount of carbohydrates in a certain format that is easily and readily accessible. This is not a "snack", this is a life-saving preventative that we hope to not need in your business. It is not an excuse to consume food that wasn't purchased for 400% retail pricing after waiting in line forever. You are not losing anything allowing this treatment to happen. Conversely, if my child were to consume something on your premises from your premises that we had not been able to yet pay for due to foggy brain/long-lines, you would be screaming that it is theft (even with the intent to pay). You might be a small business, but what is stopping every business then from requiring us to purchase fast-acting forms of glucose from every single shop we might visit? Walgreens, Target, Wal-Mart, malls, sporting events, schools, gas stations, movie theaters, etc all have food on-site. Imagine having to go into a line first thing (even if just browsing), buy a huge pack of Skittles, then have to shop around and re-enter the line later to make your actual purchase. You haven't eaten the Skittles but now you need to stop at another store. You have to leave that one in the car and go into the next store, only to repeat. (But wait, if you are in a drive-in movie theater, the owner is making you throw away what you brought for lows during the drive!) Businesses claim that by being a "small business", it is financially hurting them to not purchase glucose from them and that we shouldn't receive special treatment. When your business has the news media come to your location because you denied my child entry due to their Halloween-sized candy, that will be financial hurt. Our children did not choose this life.  Don't even GET me started on insurance coverage and denials. Some insurance companies require that your child have several documented episodes of medical intervention or seizures before they will cover items like a CGM. Their cost analysis is literally we-will-make-you-prove-that-you-are-going-to-cost-us-more-in-ambulance-fees-than-in-CGM-costs.  Better yet, your A1C (a diagnostic tool that measures average glucose) is now "healthy" so we will no longer cover your CGM. Umm, the reason it's so "healthy" is because we are ON the CGM!

  • We struggle with money. Even if we make enough money, we always fear not having enough. We fear not having enough money to pay the insurance premiums, enough to pay our deductibles, copays, coinsurance, etc. What if my zombie status or my sick child makes me lose my job? Will I lose my family health insurance?  What if my insurance stops paying for X? Do I make enough money to pay for it out of pocket? What if someone thinks this CGM receiver/pump is an iPod/iPhone and steals it? Chances are that even if we are able to make those payments for everything, we are missing out on something else. That might be a vacation or getting rid of cable.  Something in our lives is not as it would have been if not for d-expenses. There is always a trade-off somewhere. Quite a few of us have stockpiles of d-care items, just in case. We all do the we-have-insurance-now, so we-have-to-maximize-it-for-those-What-If-situations (or for a (real) zombie apocalypse/doomsday scenario, whereas you do not want to be near a pharmacy because all the other D-parents will be raiding them for insulin).

  • We cry (or frequently want to). A biggie for us personally: generally we (d-parents) say that our d-kids can eat whatever they want, as long as they bolus for it....and generally that is true. Except when it isn’t. Most of us have a list of forbidden items, such as waffles, high-sugar cereals, cotton candy, etc. If your child has high blood sugar to start with, you do not want your child to eat a carbohydrate heavy item. It’s sort of like being on a diet, except if you “cheat”, your consequences can include loss of eyesight (retinopathy) or dialysis in later life.  So when we see our kids longingly staring at the fried funnel cakes, we know that 6 hours of high blood sugars are just not worth it. When the kids next to us walk by with giant pixie-sticks, I know that’s not a possibility for my child. Sure, my kid will most likely be healthier for not having it (diabetic or not), but it’s the ability to eat it carefree that I die-a-little-inside over.   Others might feel that way over sleepovers, sibling jealousy (either d-kid gets jealous of non-d siblings, or siblings jealous of attention d-kid gets), bullying at school, struggling to get schools to comply with ADA requirements (last week a school made a d-student eat pizza out of the TRASH because they were out and she already had insulin for it. Trash?! Proper training would have never allowed that to happen.)

  • Our hearts break frequently. It’s the pain of seeing your child in pain. Let’s face it, NO ONE wants to be stuck with lancets 6-10 times per day on their fingers. No one wants to have either needles being stuck into them every time you eat, plus a few extra to account for a long-acting insulin and any high blood sugars. No one wants to have IV sized needle/cannula systems being inserted into their fatty spots every 2-3 days (pump) and/or every 5-7 days (if it lasts that long for CGM’s). My own 3 year old starts crying and screaming the moment we pull out all of the equipment for a CGM or pump change. She runs when it’s time to check her blood. We’ve played games, distracted with TV, gave rewards, etc. It got easier for a bit but then diabetes burnout happens to the best of us, including 3 year olds.  When they start getting older and ask you why they have diabetes and will it go away when they turn X?  Watching their little faces as you explain to them that “No sweetie, this will be with you the rest of your life”.  That is a pain that you don’t want to have to face.  We are currently doing no stomach sites for our daughter's pump, because I am so afraid that the scars will remain from years of site changes.  I don't want to have to face her when she is a teenager, crying because she thinks she looks horrible in a bikini due to the plethora of circular scars mottled across her stomach.

  • We cannot STAND comparisons, know-it-alls, or being blown-off. Remember everyone, to assume make an A** of U and ME.
    • Don’t assume that our kid can’t eat it. Unless you ask, you don’t know. While I might not let my child eat cake every single day, I would quite possibly make an exception at a birthday party or let my child have ice cream after a heavy bought of play. Conversely, don’t give my kid items without telling me ahead of time. Assuming that he/she can have ice cream and just giving it to them is not the same as my dosing insulin for it beforehand, allowing the insulin to start working first, and then carefully portioning my child’s snack to fit the amount I dosed for.
    • Don’t compare my child to one that has another disease. We hear “Well at least it’s not cancer” quite a bit. Yes, we know that things could be worse but do we need you to remind us of that? We still wake up every morning thankful that they survived through the night. Some parents aren’t as lucky as that. They both have stresses that you cannot imagine so please don’t make that assumption for us. 
    • Don’t send us the latest Facebook post/e-mail chain about how Okra water/cinnamon/moss will cure my child. Type 1 diabetes is an autoimmune disease whereas their pancreas is all but dead. Okra water will not revive it because within my child’s body there are killer antibodies that attack healthy cells. So even if/when they are regenerated, they are killed off again so quickly that it doesn’t even matter.  They will never outgrow it, even though it’s previously known as Juvenile Diabetes. One of the reasons they changed the name is because juveniles grow up into adults but still have the disease. They don’t transform into diabetes-free individuals or suddenly label themselves as type 2 (metabolic diabetes). It used to be called Juvenile Diabetes because it was juvenile children that were being diagnosed most frequently with this form of diabetes. Quite a few parents also notice your choices in diabetes humor, such as those picture meme's showing a high sugar item that states it's name isn't Kit Kat Lasagna, it's Diabetes. It's all fun and games for you, but let me remind you all that I was not a d-parent either the night before my child was diagnosed. I hope that you never have to know and live diabetes.
    • Don’t tell us that you know ALL about diabetes because your sister’s friend’s aunt had it and you went over to there house one time and watched her get a shot. Likewise, your grandmother’s leg was amputated so if my child eats that cookie then they will have complications like that and I am horrible parent to let them eat that. Even Type 1 patients are not alike. My child might only take 6 grams of carbohydrates to treat a low blood sugar while the teenage boy around the corner might need 20 grams. Around 90% of diabetes cases (or diabeetus for the Wilford Brimley generation) are considered Type 2 and are metabolic in nature. In other words, their pancreas still produces insulin but the body cannot use it correctly for some reason. How much their body is able to use is what determines their treatment options, which is why you hear of some people taking pills only, or one injection only.  The overall supplies are the similar/same as Type 1 but the mechanisms that cause it are completely different, so unless you have extensive personal training in Type ONE diabetes, you do not know-it-all. Even Type 2 diabetics and doctors get it wrong a lot when it comes to Type 1 diabetes. 
    • Don’t make statements like “But he/she’s not fat”, or “get him/her to lose weight and he’ll/she’ll lose the diabetes too”, or worse yet “You shouldn’t have let him/her have candy, then he/she wouldn’t have gotten it”.  Type 1 diabetes has nothing to do with weight or eating habits. There was nothing we could do to prevent it, and nothing we did to cause it. Saying these things only make us feel badly because our only options are then to sit there and take the ignorance, or defend ourselves (and kids) and embarrass everyone. Meanwhile, I’ve got to go home and explain to my child (again) why they have diabetes, that it’s not something they/we did, and not something they can get rid of. But thanks for giving my child a complex, false hope, or eating disorder.  (Diabulimia is a real disease, please Google it.)
    • Don't tell me that my child should test blood/give injections in the bathroom. If you would not be willing to eat your own food in there, why should my child be exposed to bacteria through an open wound? We will strive to make this part of our daily life as minimally noticeable as possible, but we can not completely hide it. So please, look away because you do have the option to avert your eyes. I'm sorry if you do not like blood but neither do we. We have to do this, while you do not have to look.
    • Don’t assume that my child cannot do what other children do. We might monitor it more closely than other children, but they are still out there enjoying childhood (as they should!).  We may request special accommodations occasionally for them (I mean, insulin as a medication is not like a Tums. If they wait too long to eat, they can go unconscious or have a seizure), but that doesn’t mean they can’t play X, or do Y.  The US Supreme Court currently seats Sonia Sotomayor, who is a Type 1 diabetic. The Chicago Bears have Jay Cutler as their quarterback, also a Type 1 diabetic. Olympian Kris Freeman cross-country skied his way to Sochi in 2014. They can do just about everything your child can, with only some minor limitations later in life regarding choice of career (mainly active military and some driving occupations).


Note: Not all diabetic parents may feel this way about every single point. Some have amazing support systems already in place, have lived through it long enough they’ve adapted (finally), and/or have a personality type that was forged in iron.  A lot of us though are nodding our heads as we read through this and hope that those parents of non-diabetic children or those without children can begin to understand our world. We love our children and hope for a cure every single day. The day the cure is announced, listen for the whoops and screams originating from somewhere nearby you, as we race to tell our children that they can live their lives without fear of not waking up in the morning, or going through thousands of needle pokes per year, or being on a first-name basis with the local fire department/school superintendent/doctors’ office.  If you want to aid us in making that a reality, donate to www.jdrf.com.

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