Anyone who might know who authored this, please tell me... it's beautiful! I received it in my email box several days ago and given the subject matter, it's too good not to share. But I've tried to find out who wrote it, to no avail... Get out your tissue box...
WHAT I WAS TOLD WHEN MY SON WAS DIAGNOSED:
1. If I was careful, I could achieve good control over his BGs (blood sugars).
2. If his BGs were off, we had to look at what I was doing to cause the problem
3. The most important thing I could do to control his BGs was to write everything down.
4. Managing diabetes is nothing more than simple math. All I had to do was look at how many carbs he ate, make sure he got a fat with the carbs, then give the amount of insulin to counter the carbs and his BGs would be normal. (At that time I was also told that he couldn't have "fast" carbs unless he was low or unless we countered that with a lot of fat to slow it down.)
5. Once he got the pump, I was told to "trust the pump" and not worry about him going low at night.
6. I was told that if he did go low at night, he'd wake up and that would be out "alarm" so I was to sleep without worry.
7. I was told that exercise would change his BGs both at the time of the activity and at night well, it could be altered for up to three nights, but I could figure out how to counter that. All I had to do was time how long he was active and what type of activity he was doing and I would be able to do the math to adjust his insulin dosage.
8. When I took my son to the hospital when he went unexpectedly VERY high I was told by the endo that I needed to go through all the classes and relearn how to count carbs because I obviously didn't know what I was doing. (Turns out that it was puberty throwing him off, not carb counting.)
9. I was told that none of this was "really a big deal" and that we'd learn how to live normal lives with diabetes comfortably in the background.
10. And with all of this record keeping, timing of exercise, measuring of foods, insulin injections, pump sets, poking of fingers, and calculations I am supposed to allow him to "be just like every other child".
WHAT THEY DIDN'T TELL ME:
1. There are many, MANY more things than carbohydrates, exercise and illness that have an effect on BGs.
2. We have no control over most of these things.
3. If you allow your child to go out and play, he is NOT going to be doing measured exercise. He may spend an hour chasing his friends with paintball guns, then sit in a tree for another hour watching ants crawl up the trunk. This is "joy" to a child and if you try to measure that or to get your child to pay attention to his every move, you will kill his soul.
4. NORMAL kids have no patience for writing down everything they eat, their BGs, their planned exercise for the next hour and the momentary state of their current health 4-6 times a day. Hell, most adults don't have the patience for that crap.
5. Writing everything down all the friggin' time helps nothing. Writing everything down for a few days to make adjustments is very helpful, but if you ask someone to do this all the time, they will burn out in a bad way. After that happens, good luck getting them to keep a record again.
6. Not every diabetic will wake up from every night-time low. This is how diabetics die in their sleep. (Duh.)
7. The pump is better than shots, but it is NOT a miracle.
8. Even if you are the most obsessive-compulsive person on the planet, you will have unexpected highs and lows. Perfectly replacing a vital organ that's part of the endocrine system is absolutely impossible with the medicines and therapeutic approaches we've been offered.
9. If a parent does enforce strict control on their diabetic child, there is a very good chance that this child will go through a period of rebellion. They'll rebel against the parent *and* the disease. This period of rebellion may happen when the child is a teen or (worse) when they first leave home and taste freedom. I say that the early adult rebellion is worse because there's nobody there to catch them when they fall. (How many college-age diabetics die every year?)
10. A1Cs do not measure your parenting ability or how much you care for your child.
11. The single most important thing that they did not tell me was this: When I try like hell to do everything right and my kid's still swinging, IT IS NOT MY FAULT. When I stop freaking out about every high, every time he forgets to bolus, every time I suspend the pump before he goes out and let him continue playing instead of interrupting him for a snack, every day I simply blow off record keeping and let my kid play and eat and be a kid, I AM NOT A BAD MOTHER. I am being a mother first and a nurse second AND THERE IS *NOTHING* WRONG WITH THAT.
The doctors are only concerned with his body. That is their job. They do not see the boy, they see a 12 yo Caucasian male with Celiac Disease and Type 1 diabetes, 90 pounds, BP 125/65, pulse rate of 70. I see the kid who loves rockets and who chuckles quietly every single time someone farts. I see a boy who's most proud of his 8 foot long catapult and who can cook a mean salmon. I see a young man who's secretly saving up his pennies to buy an engagement for his future wife. I see the boy who punched a neighbor kid for frying ants and who can patch up a dog's torn-up face. A kid who talks too loud in restaurants and laughs too hard at commercials and forgets to feed the dog and to put down the seat. And that's exactly who I'm supposed to see.
As a mother, my primary responsibility does not only center around the care of his body, it centers around the care of his body, psychological well-being, and his soul. My job is not only to raise a healthy diabetic, I'm supposed to raise a loving, excited, curious, happy, well-adjusted, well-educated, powerful human being and sometimes his body will need to take a hit to make the rest happen.
Am I teaching him not to take diabetes seriously? No. I am not. I'm training him how to care for his disease, but I'm refusing to instill feelings of guilt, fear and failure every time he sees a number. "Oops. That's a little high. Better fix that," is a healthier attitude than "Oh my God. I'm killing myself. If I'm not careful I'm going to loose a leg." (Especially when we all know he can be the most careful diabetic in the world and he may *still* loose a damn leg. And if he does loose a leg do I want him to feel like life isn't worth living? Is that *really* the worst thing that could happen to a man? Do I want him to *hate* himself because of it and blame himself? Heck, his daddy's a soldier. This family's prepared for the loss of limbs.) I'm teaching him that diabetes cannot be the center of his life and he cannot spend his every day on this planet fighting and stressing over death.
He is going to die. I really don't know when or how, but I'd rather him have 45 years of wonderful than 85 years of strain, guilt and fear. If he disagrees with me, there is no reason what-so-ever that he cannot take a different track and I will support him in that decision.
These are not excuses for imperfect control. These are the realities of truly *raising* a diabetic child. Hell, I'm not raising a diabetic child. I'm coaching a boy into becoming a man. The medical community will never get with the program, never open their eyes and see complicated people. They will only see bodies. We, as parents and patients, need to understand that and not allow the medical myths to corrode our self-worth as human beings.
So, all you diabetics and loving parents of diabetic kids, do your best, release the guilt and surrender the fear. Love yourselves and your kids fiercely. Don't judge your worth by the myth. In the end, it's the love, compassion and laughter that's important, not the digits after the "beep".