Letter to Diabetes

Dear Type 1 Diabetes, I would like to personally thank you, as a mother, a human, a nurse, and a... redhead, for all the immense joy you have brought upon my family. I think the greatest thing that you have done in the past eight years was completely stunt my sons ability to function on several occasions.... I appreciate that, because who wants a kid with a big head, walking around thinking he should be able to "breathe" and "walk" and "have a potassium level that is compatible with life", you know? kids are cocky nowadays, with their newfangled gadgets, and thier earbuds, and Iphones, and insulin delivery devices... Im just really glad that someone is there to put them in thier place. I also would like to thank you for COMPLETELY BAFFLING ANY AND ALL INSURANCE COMPANIES AND/OR MEDICAID/MEDIPASS/MEDICARE. Thanks to you and your befuddling unpredictability, Insurance companies can really just get away without having to cover those pesky insurance claims due to what is only known within the DIABETIC community as YDMV. (your diabetes may vary). I mean, lets face it, 'Betes, (I can call you 'Betes, right?) if you were predictable in any way ever, then they would have to cover diabetes treatments without question. Those pesky diabetics would possibly get an edge if they were not constantly digging in their pockets to cover thier necessary health care essentials, and maybe one of those little screwballs would rise to some sort of authoritative position in this world and god love us... THEN what? I mean, really, can we really have any of those "too sweet for my own good" jerks making laws and such? I think not. So, thanks for being to confusing for most people to understand, and thus, write any policies regarding. Thats been awesome. I would like to personally thank you for immediately picking up on my sons pump occlusion last night, and spiking his sugar to over 600 for half the night. The sound of massive amounts of vomit hitting my wood floor was really, a great way to wake up... and I totally love to watch my still sleeping son lie on his side and projectile vomit all over himself. Thats neat. appreciate that. Without you, he would never know the joy of peeing on a ketone stick when his vision is too blurry to even focus on the stick. Thats just a riot, really... we have so much fun with those madcapped and zany moments! Its like, "what am I supposed to pee on mom?" OH gosh, I chuckle just thinking about it. Really, Diabetes, I think youre just so incredibly NEATO for all the nifty things you have brought into our lives. I love when his blood sugar gets so low that the adults at school think he is acting up and scold him or send him to the principals office by himself. Thats Such a HOOT! I cant possibly start to name all of the fun things you provide. But since your so awesome, here is a start. Lipodystrophy Renal failure Dehydration Headaches Nausea Blindness Neuropathy Non-healing diabetic ulcers Injection site infections finger callouses abscesses infection brain damage vomiting amputation polyuria polydipsia muscle wasting subcutaneous atrophy impotence brain swelling ketoacidosis infertility miscarriage diarrhea heart disease stroke The list goes on.... Oh gosh, Betes... Thanks for all these things... without you, Life would be so stinking BORING. From the bottom of my heart, Diabetes... Thanks so much for all you have done to enhance our lives. On behalf of my son, and everyone who gets the pleasure of your lifetime visit... Thanks. thanks a fucking lot. Sincerely, Mary Jennifer Dean, RN.

I was talking to my oldest about my middle child the other day. I was trying to explain to Nolan why he could not go to the park with his younger brother Patrick and Patricks friends Michael and Elijah. "Patrick needs alone time with his friends without his older brother stealing the show, Nolan" "I wont steal the show, mom, thats stupid." "oh I have seen you steal a show or two and Patrick needs time to not be in your shadow" "Thats not even true mom! Patrick gets all kinds of attention!" Not really though. Patrick, 12, was technically the youngest child until he was 8. Then came Lily. The adorable little sister, all smiles and hugs and Shirley Temple personality.... and Add that to Older, handsome brother with a serious and chronic medical condition and a bad boy image... (girls dig that, the vulnerable rebel thing he has going, with the punk rock attitude) Patrick is living, for the most part, in the shadows of both. "Mom, so what?" Nolan argued, "Patrick got all the attention until Lily was born, and I mean ALL of it... for eight years!" And there it was, in front of me, for the first time ever, and as the thoughts were falling into place, like Tetris pieces.... the words were coming out of my mouth, "Not really Nolan... he was the youngest child until he was... Lilys age... Until he was 4... He got all the attention until you got diabetes." Nolan opened his mouth to argue but then what I had just said registered... I continued, "Nolan, patrick took a back seat to diabetes on the day you were diagnosed... and so did you... so did everything... but to him... it was YOU getting all the attention... It was YOU that mom and dad were giving all of our concern and attention to... everything was all about you. Patrick just faded into the background, and he really, honestly... He took it like a champ and so did you." Nolan didnt ask again to go to the park. In some ways I am shocked at how long it took me to figure that out. I know, though, why I wasnt figuring it out... I was too busy... with Diabetes. It keeps you busy... invested, every second of every day. In your sleep. It sounds like melodrama, but it is all true. Diabetes is not just a mealtime problem, a food intake problem, a "how much insulin do i need" problem. Diabetes is a constant worry. Diabetes will eat your soul if you let it. You can become so obsessed with Diabetes that you cannot see the child through it. Numbers will come at you in your dreams. School nurses will call you with questions that baffle you... It is like a nagging parasite. It needs your attantion all the time. If you forget, youll remember via guilt pang or medical emergency. Diabetes is never "controllable". It will take your attention away from everything. Patrick was a middle child much earlier on than we thought, because diabetes is exactly a newborn child. The only difference between having a newborn child in the household and Diabetes, is that a child, eventually grows up and requires much less attention and supervision as times goes by. Diabetes never makes it past the toddler stage. You still have to make sure its not going at the outlets with a fork. You still have to check its pants for poo. Diabetes robs ALL children in the household of a childhood, of doting parents, or even attentive parents. Though it hardly warrants a place setting at the dinner table... Diabetes always wedges itself in, usually between mom and her meal... but it is always there. Invasive, at least. Patrick is an amazing middle child. A Piano player. A boy who has been drawing house plans since he was 7. A boy who is sensitive and funny. Very quick witted and anxious to know more about people. Patrick Dean. My middle child. He is an amazing young man.

Diahbeetus

In a few short months, Probably, maybe even now, Nolan will have been diabetic for more than half his life. I wont lie. It stinks. But there is a glimmer... at the end of the diabetic tunnel. A1c has remained in the single dijits... Go ahead, "tsk" all you want about that... I know my kid and I know that is an accomplishment. It was so bad for awhile that I feared someone would report me.
He hid his pump, He lied about sugars. When i went to check his meter, he would take the battery out. it was ridiculous. Arguments every day.
Locking myself in the bathroom at the roller derby in Iowa City and having a good cry... Watching my kid not care....
But now... He has figured out that he has to take care of his sugars if he wants some independence.
I never punished over diabetes related stuff. But, there are things that he cannot do if he is not taking care of it.
He can't stay over at friends houses, or leave to go ride bikes with his friends all day. or to the skate park for hours at a time.
He either decided that he wanted some independence, and started checking without being asked, and bolusing without being asked... Its possible, and preferable that he cares about himself a bit more... but I am going to take what I can get.
He has been out all day... riding bikes with his friends.
He takes his kit with him, and though he seldom checks when he is out, he does check before he leaves and if I call him.
He loses his phone if I call him and he doesnt answer. He will lose it for up to a week, depending on how mad I am, and how many times I call. If he calls me right back, then I forgive.
He is impressing me. He shows up on time and even early.
He does take risks... wants to live on the edge. I am not sure if it is something that goes on with oldest children, or if it comes from having an incurable disease.... But its who he is. I cant stop that.
I feel like he understands sometimes why I am strict. Most of his friends get to run willy nilly all day long. But thier parents, I think... are pretty naive.
They don't worry about their child collapsing from hypo or hyperglycemia. They also, maybe, don't know all the tricks and lies and naughty things kids can pull on thier parents. I know because I was a very sneaky and manipulative little girl.
I lied to my parents about where I was. I went to slumber parties that were actually keggers when I was younger than Nolan. I rode in cars with boys two years before I was allowed to date. I drank. I smoked. My parents could never smell it on me because they were smokers. Whats to smell?
When I was accused I pulled the old, "I cant believe you don't believe me" bit, and worked my parents guilt... They ate it up... because they wanted me to be good.
I feel like I eat nothing that he serves me.   And I couldn't care less if he is good by anyone else's standards.   I want him to be,  simply,  to keep existing. 

I have never thrown away a vial of insulin. Not one. I have so many. I am not sure what I am hanging onto them for. I had a few ideas of what I would do with them and Im not sure I want to now.
At one point I was going to fill them with something special, and maybe sell them for a a fundraiser, but I never knew what.
I have hundreds of vials. Fat little Novolog vials, and Long Lantus vials, maroon decoreated Humalog vials... Hundreds.
They take up space...
I open the drawer that I keep them in and I am not sure what I am going to do with them, so I shut the drawer.
I sometimes gaze at them and think about how these little glass bottles have affected our lives.
They have all had a copay.. ten dollars, twenty dollars, a dollar, depending on the insurance we carried at the time... I dont keep them because of the money... they have no monetary value.
Most of them have a date written on them... either in permanent marker, or in pen, on a small piece of torn paper, and fastened under a tegaderm. The date it was opened.
My sons life, accessed through a rubber stopper... day after day after day.. month after month, a needle, plunged through rubber...
and it leaves no trace at all....
Not one tiny dot, the route to his survival... and the eye cannot see it.
Still, air tight after accessed.... Like it never happened... like the diabetes is from a different reality, and like it it was never there.... a whisper in a crowd.

My husband knows not to throw them away. He tried once...
but I cant, somehow...
I just need them...
They are a comforting, somehow...
and they are in a drawer.

and one day, I will know exactly what I am supposed to do with them...

Homecoming

It's been a while since I have posted. I'd like to say "oh I was just super busy" but thats not the truth.
The truth is that I had nothing good to say for a while. My last post summed it up. We were all insanely sick of diabetes for a good long time. School called me two or three times a day with concerns, not only with Nolans blood sugars, but his behaviors as well. He was eluding the school nurse when he was meant to go in and tell her his sugars. He was taking detention regularly for doing stupid little things to get into trouble like chewing gum, or, writing on his desk, things like that. He was having a very rough year. I all but gave up. It was a constant battle. He was angry every day. He swore at me. My little angel swore at me, and not just the once. Not even once daily. He tried smoking. He wrote all over his arms and hands with black sharpie every day. It looked filthy and pissed off every adult on earth, including me. I'm not sure why, because I am one of those gals who goes around promoting freedom of expression...He wanted to guage his ears out, (which, much to his father's shagrin, I dont have a problem with).
The school counselor expressed concern that he wore mostly black clothes. I told her I was ok with that. "WHAT?" she spat her coffee onto her papers, "that's alright with you? You dont think he is alienating people that way?"
"only people that he feels a need to alienate, I guess, Half the kids at this school shop at HOT TOPIC for the love of everything holy, its a style... its not rebellious and dark if you can buy it at the mall!" I told her. Lost her at hello.

Basically he went through a metamorphosis, a very painful, unappealing incubation period and he is... I think... coming through it.
Now, he has not found the Lord Jesus, nor has he joined the chess club or the Golf team, and not just because they don't offer that at his school....
He may go out for track, but will probably never be a jock, and thats cool with me. He still plays his drums and is learning bass, and has impressed me to the point that I paid him cash money to babysit. At least half what I would pay a babysitter I was not related to.
He works a bit more with his diabetes. He still "forgets" to bolus. He still lies about his blood sugar levels, but not every time now.
He still swears, but not at me, now he just swears like he is talking to one of his friends, "oh I have a lot of homework and sh**." I correct him. He is 13 now. He is influenced by his friends now.
I am crossing my fingers for a better a1c and hoping for the best.
I was checking my phone last week. I often leave my ringer off so I can miss calls when I am driving... and school had called. CRAP. what now.
I called back.
"hi this is Jen Dean, well, Mary Dean, thats my first name, we have this conversation every time I just need to quit, Nolan is my son and I just got a call its probably from the nurse..."
"yes, Hold on let me try that extension"
"Julie Lastname, can I help you?"
"Hi Julie, its Jen, Nolans mom.... I saw that you called?" I could hear the defeated tone in my own voice.
"yes!" she started, "I just wanted to call and tell you that Nolan is really doing an excellent job coming into the office without being told this year, and his sugars are so much better and he is just all around much more pleasant and enjoyable to be around. We haven't had to chase him down once this year he is being VERY responsible"
Uh... huh? no, this is Nolan DEAN's mom.... uh... wait a minute... are you saying... what is this, am I on punked?
I had to choke back a little something that was caught in my throat and had some allergic sniffles right then. No I wasn't crying...
"Thank you" was all I could say for a second.
"I really appreciate hearing that, you have no idea how nice that is to hear....
and it was.
So, finally... he is loving himself a little more, and the rest of the world, or at least a few people that matter are taking note of what an awesome kid he really is.

Wow. Keep it up Nolan. Don't ever be someone you're not, but DO love yourself... and do show the world how you can shine from the inside out...
I love you Nolan.
and no mom could dare be prouder.

Today

Nolan has now officially retired from having diabetes. He is done, he has said, "I'm out!" and no longer wants to have anything to do with it.

And I dont blame him.

For almost five years, he was an ideal "diabetic" and endured all of the lameness of being sick and feeling crappy and shots and sites, and pokes, and lows and highs, and restrictions at times, and everything else a kid can go through.

Even when he was being diligent about his diabetes, with my help, he did still hear a lot about how he was maybe "faking" his low blood sugars, and "faking" feeling sick, or "playing games with his food" so that he could be high, or low, and go to the nurses office at school.
Because all of us know, there is no more rockin' place on earth than the nurses office.

If everyone accuses you of it... I guess, why not?
So it gave him a good idea. One night, when he was asleep, he somehow disconnected his pump, and consequently woke up at over 600 with ketones. Of course, he also had not eaten since dinner, so that did not help the case. I cant take him to school like that, and he had to stay home.

So, after that happened, he disconnected again, and again, and again. I dont know if he is doing it in his sleep, or if he is just doing it, but finally I started putting a tegaderm OVER the site at night before he goes to bed, which he despises, but it works.

He lies to me about what his blood sugars are, and wont show me his meter... I have to make him show me every time now, and he hates that.

I know that it stinks, and he really does understand why I need to do so much of that.... I would like to turn it over to him soon, but right now, he wont do anything.
He does not want to.

And why would you? when your parents ask what your bg is and you tell them 340, and then you get a myriad of questions as to why, and you dont really care, you just want to make the biggest lego airplane you can...
Did you eat something,
are you feeling ok?
Did you wash your hands first?
"I dont know, ma... I just want to be a kid"

And so, for now, I continue to sneak up on him and look at his pump, or I try to ask him when he is in a good mood, but often it is a fight. But, he is alive to fight with me.
And that is what is important.

SPANGST

Man alive! I love my son, but 5th grade has sone a number on his attitude. He is not only the whiniest kid on earth, he has also mastered the art of showing his exasperation with his incredibly stupid parents.

I remember that. I remember when I got so hip to the jive that my parents suddenly became the STEWPIDEST people roaming the earth. It was a miracle they were toilet trained, seeing that they spent thier entire lives in OBLIVION... and lucky for them, they had me to teach them. How did they fumble thier parts together TWICE in order to make my brother and I? Was it some moment of drunken clarity that they accidentally created life, I mean... these guys were dumb. I couldn't figure out how they managed anything, let alone both of them getting thier Masters Degrees.
(not to mention doing it BEFORE they got married ,and getting married BEFORE they had kids... now see, I did it exactly the opposite way around, first kids, then marriage, then a degree, no masters... not yet.. pine for that. smart me.

The new thing at my house is that whatever I go to tell my 11 year old, he already knows. He is showing a very astute psychic tendency, I will tell you that...

"Nolan, time to get up for school!"
"I KNOWWWWWWWWWWWWWWWWWWUH!"
Oh OK I didnt know.

"Nolan, I am going to pick you up a"- Interrupts- "I KNOWWWWWWWWWUHHHHH!"
"a new minibike after school" (i finish with a lie to get his attention)
"oh but you knew that already didnt you?"
"OH MY GOOODDDDDUUUHHHHHHH!"
He knows about my game.

"Nolan, could you put"--YES I KNOWWWWWWWWWWUHHHH!"
"your-" -"I KOWWWWW"
"socks-" -"YES I KNOOOOOOOOWWWWWWUUUHHHHHH!"
"in your-" -"I KNOWWWWWWWWWWWWWWW.. Im putting them in my dresser, GODDDDDDDDUHHHH!"
"MOUTH???? ALL OF THEM???? CAN YOU FIT THEM ALL IN THERE SO I DON'T HAVE TO HEAR YOUR CRAP?"

OK I dont say the last part, but I want to.
Dont even let me get started on when I ask for blood sugars.