Friday, February 26, 2010
My husband, alarmed at the sight, asked me what was wrong.
As I poured out my heart a mile a minute…recounting all the words of my blog yesterday, referring regularly to the post on DiabetesMine, and using the words “High on Freedom” in every other sentence…my husband did what every gentleman would do…
He pulled the emergency break to stop the train and then carefully step by step helped me off until I was on solid ground again.
After listening to my rant, he sat thoughtfully in his seat for a moment before he offered this:
“I think you may have something there,” he said. “But I think that is just a small part of it all…I really think he is just lazy.”
I tried to explain to him that is what all the parents in the comment section thought, but really it was their childs bid for freedom from their diabetic lives. He didn’t totally dismiss it, but he insisted he knew something I didn’t. He insisted J was the mirror image of him when he was that age, and he knew some of what was going on in J’s head.
I value his opinion. I know men think differently than woman. So I let him plead his case.
He presented the facts.
* J checks his sugar every morning and boluses for breakfast on his own. He never forgets.
* We have told J that he only needs to check his sugar once before lunch at school.
For whatever reason, J ignores his snack alarm, and doesn’t test sometimes. (He was determined to get to the bottom of this one.)
* J boluses for his snack every day.
* J calls me after he has eaten his lunch every day and even checks his sugar then when he realizes he forgot to earlier. (Which if course, this number is of no help to me, but it is effort none the less.)
* J always tells me the truth when he doesn’t test. He isn’t lying to us.
* J will check when he feels low. J called us twice in the last two weeks before lunch saying he felt low, checked and had eaten a snack.
* J helps L check his sugar in kindergarten at least 3 times a week. He never complains about this, and always calls us to tell us the number.
* J always brings his monitor on a fieldtrip or the track when they run the mile and never forgets to test there.
In conclusion, he says, J is just not checking sometimes at snack. And after dinner he needs to be reminded to bolus because he has done his homework and usually B lines to the TV or his IPOD.
He insisted on picking up J after school for ice cream and having a talk with him. He was confident he could get to the bottom of it.
And you know what…I think he did.
It turns out his alarms to check before snack go off during Math time. Every day in Math the kids are split up in groups…each group has kids in different levels so the kids who understand the work can tutor the kids who don’t. Jack is a tutor, and when his alarm goes off he is usually helping someone with some problems, and turns it off to check later. But when the snack bell rings, all he can think about is getting onto the playground. Ryan and J came up with a plan to put a second meter in his desk so he doesn’t have to walk across the room to check. J seems to think this is a brilliant idea.
It is agreed that freedom is part of the problem, even if J doesn’t realize it yet. J insists that he has no “issues” with his diabetes. He honestly thinks it doesn’t adversely affect his life at all. Ryan was clear with him that, yes we expect a lot from him, but we would expect the same from all our children, diabetes or not. I even remember now Ryan having to take my older, non diabetic son, out to ice cream to give him the same “take your responsibilities seriously” talk.
Last night J hugged me before bed. He said, “I know you are worried mom, but seriously I’m not forgetting things on purpose…I’m OK. I was just stressed yesterday because we had three assessment tests for our report cards yesterday, and it really stressed me out.”
So I offer this new epiphany that came to me at 2:00am this morning…
Could it be…maybe I’m in denial here…could it be, that yesterdays freak out session had more to do with me than it did J?
That maybe I was so freaked out about handing J the playbook that I freaked out when he didn’t play the game by my rules. That I ran onto the field blowing my whistle like an overzealous coach and called a time out on his play.
That MAYBE I’m so scared of what MAY be coming down the road…that I called it before there was time to let it play out.
That MAYBE I’m not giving him a fair chance.
That MAYBE I’m trying to take back the control I handed over to him just a couple weeks ago?
I’m back in the bleachers. I’ve been kicked off the field. I’ll continue to scrutinize each play…but next time I’ll show more restraint. I won’t stop the game and cry foul all together. I’ll take the role assistant coach and help him figure out how to correct his plays so he can score, and make himself and his family proud.
Thursday, February 25, 2010
Mom of the year here has crashed. She is flat on her face. Lost in her emotions.
It’s all about J.
You know, I blog here every week like I know it all.
Like I got it all figured out and wrapped up in a pretty bow.
But I found out yesterday, that I will never know what my boys go through every day. I will never know their heartache, their fears, and their exhaustion from the day to day with this disease. I thought I was shielding them from the worst of it. I thought I was making things easy on them by doing the bulk of the work for them. I thought that diabetes was just a few seconds out of their day. That I was doing all the worrying for them…
I thought wrong.
Here is J. My responsible, straight A, bright boy. His teachers have always praised him for how ‘mature’ and ‘responsible’ he is. He has always been the ‘perfect’ kid and student. He has always taken his diabetes seriously, he has always tested, and he has always bolused. But this year is he is slowly falling apart. He needs reminders to check. I have to hound him after dinner to bolus for his food. I have to have ‘talks’ with him about taking responsibility for his body. After all, I thought, I have done it all for him up until now…how hard is it to take the initiative and remind yourself?
When he does fall off the wagon, (so to speak,) we have a ‘discussion’ and for the next week he is spot on…he checks at school and I think it all is better now. That the problem is fixed. But then the next week comes, and he ‘forgets’ to check again.
“How can you forget to check? You have an alarm on your pump and on your watch to remind you. What do you do when they go off???”
“I turn them off.”
“And you don’t check?”
“No, I don’t check.”
“Why? Help me understand why.”
“I don’t know.”
It came to a head yesterday. He hasn’t checked his blood sugar at school all week.
I didn’t yell…but I wasn’t kind. I lectured until I was blue in the face. I cried. He cried. All I could get out of him was, “Everyone expects me to be perfect. I wish I wasn’t smart, then no one would expect anything from me.”
“I don’t expect you to be perfect J. I only expect you to do your best.”
“What if my best, is sometimes perfect? I don’t want to do my best. I want to be like the other kids.”
We hugged. We came up with some ideas to motivate him to test. But I was still totally confused. I looked into my boys eyes and couldn’t wrap my head around what was going through his mind.
Until today. I read today’s article from Diabetes Mine…and it was the epiphany I needed.
Now that I have handed J the reigns…he has given himself the greatest gift he could ever ask for…
Freedom from Diabetes.
And I don’t blame him. (Man, it is really hard to type through tears!)
I mean, do you blame him? If you had the chance to sneak away from diabetes, wouldn’t you?
The risk is worth the taste of freedom to him. It is a high to be in control…to forget about diabetes for the day.
I hate that the road ahead isn’t mapped out for us. I hate that I have to live and learn, and that I will have to learn from my mistakes with J to help his other brothers when they get older. I hate that I don’t know what tomorrow holds…that we have to take it all day by day. I hate that I’ll have to pull out some tough love. That when he gets drunk on his freedom, I’m going to have to sober him up again.
This comment from a mother in regards to The Diabetes Mine article really hit me hard:
“Your story brought tears to my eyes as we face similar issues with our son 17 diagnosed at 22 months. Freedom as a drug is a great explanation for it and I never thought of it that way. That is why the artificial pancreas is not the cure, because our children will still not be free.”
My heart aches for my boys.
Until there is a cure, they will never truly be free.
Tuesday, February 23, 2010
I psyched myself up the whole way there. I went over what I was going to say in my head a dozen times. Determined not to cry, I mustered up the courage from every nook and cranny of my being to stick up for myself.
I was Inspired by the Olympics…I was going for gold baby!!
I walked in and was pleased to see an old timer at the “drop off” cubicle. I’ve worked with her before, and she doesn’t give me too much attitude.
I walked up to her and gave it to her straight.
“I have three Type 1 Diabetics, all on insulin pumps. I usually call in prescriptions, but I’m on my last vile and don’t have that luxury this month. Here is my problem. Usually, I ask you to mail me two of the boys’ insulin, so you only have to fill one. I know you don’t have a lot on hand, so I always thought this was the best way.”
She reaches for the insurance cards…I gently pull them closer to me. I wasn’t done yet.
“But when I do this, the pharmacist, in order to keep supply on hand, only gives me ONE vile of insulin and tells me he’ll mail the rest. But I need more than one vile of insulin. I NEED at least two.”
(She is following, but just barely.)
“So what do you think? Shall I have you fill all three boys’ insulin, so he can give me one for each boy…and mail me the rest? Or shall we do it the easy way have him fill one of my boys in full, and mail the other two boys?”
She is in denial.
She tells me that they don’t work this way. She says, if they have it on hand, they will give it all to me. Problem is sometimes they really do only have ONE vile left…or for that matter, sometimes none.
“I’m not saying you are not an honest person,” I reply. “But, I have been told twice that he doesn’t like to deplete his supply, and that his hording is in fact, the case.”
She insists she is right.
I tell her I am skeptical, but I’m willing to play roulette. Let’s see if he gives me only one vile, or if I’ll hit the jackpot. I grab my insurance cards, and just am turning around when she says, “We’ll get your boys their medicine eventually, don’t you worry.”
HUH???? The room slowed, I’m drunk with anger…I stopped instantly in my tracks, and turn calmly towards her. I put my purse on the counter and look her in the eye. “As long as “eventually” comes before I run out…that will be fine. “ I smile to lighten the mood. “I’m not ordering antibiotics here, my boys can’t even go a few hours without insulin. It’s more than medicine, it’s life support.”
She nodded. “Oh, I know.”
(What ev’…she doesn’t know.)
20 minutes later L’s name pops up on the pharmacy jumbotron and I’m in line. I scan the bags on the shelf. There are many that looked like they could be one vile, and a few that looked like there could be a couple viles.
Which one was mine???
The tech grabbed a bigger bag…I got FOUR viles. Holla.
The lady who put in my order walked by. “See,” she bragged, “I told you!”
“Yay,” I said, “I think we’ll have cake tonight to celebrate!”
As she walked away the new Pharmacy Tech leaned in and whispered, “She didn’t get it.”
I smirked; completely impressed that he got my sarcastic remark. “Yah, no cake…just 20 more days of life for my boys.”
I walked out victorious. 4 viles of insulin and I didn’t even cry.
That’s gold in my book.
Friday, February 19, 2010
*BEEP! BEEP! BEEP! BEEP!*
Silence is broken by alarm. The alarm clock is across the room.
Meri nudges Ryan. (She REALLY doesn’t want to get up.)
Ryan hops out of bed. (A look of relief flashes over Meri’s face. She has a peaceful smile as she instantly falls back to sleep.)
((KERPLUNK)) Ryan is immediately back in bed. He only snoozed the alarm; he did not check the boys’ blood sugars.
Meri’s heart sinks, but she is able to fall back to sleep in mere seconds.
*BEEP! BEEP! BEEP! BEEP!*
Meri nudges Ryan again.
Ryan: “I think you are confused. That isn’t my alarm, it is your alarm.”
Meri: “What???? Is it time to bring the kids to school???“
Ryan: “Very funny.” (Rolls over)
Meri rolls out of bed, dazed, walking like a drunk. Her head is throbbing from a headache she has been fighting for three days.
She checks sugars…putting her children’s life in her hands while in a state of extreme tiredness and confusion. She silently swears, “Good Hell!” as she has to correct all three children’s blood sugars.
Meri falls back into bed, and tugs unsuccessfully at the covers, trying to recover her real estate that has been stolen by said Ryan.
Ryan: (Awakened by the tugging of sheets he has haphazardly wrapped around his body) “Are you mad at me?”
Meri: “No…But just for the record the 1:30am alarm is not MY alarm…it is OUR alarm.”
Ryan: Gives a small laugh. “You’re going to blog about this tomorrow, aren’t you?”
Meri: “You bet your sweet bahootie I am.”
Ryan: Sings in a high pitched voice, “Blog worthy!” And as he rolls over yet again, he quietly curses that, “NOW, he is wide awake!”
He begins to snore literally seconds later.
And Meri? She IS wide awake…Trying to remember the conversation that just occurred, so she could indeed…blog about it tomorrow.
Wednesday, February 17, 2010
No better phrase to describe my week.
Last week at the Endo I got a lot of praise. They are always overly kind, and as I alluded to before, I am pretty sure it is because I am so pathetic. Anyway…our Endo said something on the lines of this:
(And while you are reading her words...pay particular attention to how she builds me up, so after I am torn down, the aftermath isn't so messy...)
“Meri, you have done a phenomenal job raising diabetics that are dependent on you. You could write a book on how to take care of a young diabetic. But now you are onto something new. Raising a diabetic that is dependent on himself. We’ve been telling you for months, it’s time to let go. He is ready. He doesn’t want to be dependent on you anymore…he needs to do this for himself.”
HUH? (Picture a ton of bricks landing on my head.)
You mean I’m not going to be able to control my boys’ diabetes for the rest of their lives??? You mean I have to shift the responsibility onto them eventually?
What ev’. (Indignant sniff)
But is seems I have no choice. J is 12 now, and has had diabetes for 11 years and 7 months. He will be starting Jr. High next year and he wants to eat from the food court. He wants to be as normal as possible, and apparently, that doesn’t include calling me for carb amounts. (poo)
So as prescribed by our doctor…I have let him fly the coop so to speak.
He counts his own carbs now.
I still ask him, “So how many carbs did you count for that?” And he tells me. For the first couple days, I would correct his amounts if they were wrong. He got tired of this right away. “Mom, I can’t do it on my own if you are helping me!”
So now I zip it. And it is SOOOOOOOOOOOO hard.
Even if he is wrong…I zip it. Now later, after the fact, when he checks his blood sugar and gets a higher number than he expects, I talk to him about it. “Why is this number high? What did you bolus for that sandwich? Maybe next time you should count the bread as 20 each instead of 15. “ And I've become really good at sneaking in carb lessons. I will count carbs out loud within J's earshot...and ask his advice...and pretend I don't know how many carbs something is, and have him look it up for me. :)
He IS really impressing me. But it has added a couple grey hairs. Like yesterday, I bloused the younger boys and DIDN'T EVEN ASK J if he had bloused for his breakfast. I realized this at 8:20am. He was already at school, driven by my wonderful SIL. I called her in a panic. “I didn’t ask J if he bolused for breakfast. Is he with you?” Nope, he was gone. She hunted him down for me though…and guess what…He HAD bolused.
Oh me of little faith.
He is doing surprisingly well. When he is off…it usually is just by a few grams of carb.
It’s been very satisfying for him. On Valentine’s Day, I realized when he got home that he never called me that day about Valentine Party snacks.
“Did you have extra Valentine’s snacks today? “
“Yup, I cupcake, 1 small piece of chocolate and 2 orange slices.”
“You never called me??! Did you bolus?”
“Ya, I guessed 35 carbs.”
Pretty good guess…I think I would’ve gone higher…but I give him props.
“How did it feel giving yourself insulin without having to call me first?”
“Mom, it was really amazing.” He blushed. “It felt really good.”
Bottom line: I’ve been virtually benched.
So I’ll let go. I’ll empower him to control his life. I’ll have to hover at a distance. My new role with J is not out on the “diabetes field” so to speak, but on the sidelines…routing him on…occasionally cat calling advice from the bench.
Oh, I’ll be watching the game…silently scrutinizing every play.
But, He’s got the playbook now.
It’s time for him to shine.
Sunday, February 14, 2010
*I DVR Lost, Project Runway and Castle.
*I teach the 10-12 year olds in Sunday School every week. I believe in miracles. I believe in angels. I believe in prayer.
*I rarely drive the normal way anywhere…I’m all about the fastest way. Even if it saves only seconds.
*I hate clutter. I am always throwing/giving stuff away. Some think it’s wasteful. I see it as clearing my head.
*My bestie is my husband.
*It ticks me off that the opening ceremonies for the Olympics started at 9:00pm. Sorry, my boys will not be able to participate in this WORLD WIDE celebration. Shouldn’t this be a family event???
*My boys are fully aware what PMS is, and know not to take things personally during Mom’s time of the month.
*When I graduated High School and they made a video with all the seniors telling where they thought they would be in 10 years, I was the only one who said, “Married with children.” Maybe that explains my one semester of college, and getting married at age 20.
*I’m not one to sugar coat things. I tell it like it is. The truth sets me free.
*I don’t think I am better than anyone. But I do think what sets me apart from some people is, I KNOW when I am being unfair, stupid or stubborn. I think a lot of people don’t realize when they are acting badly. This also lends to me being very hard on myself. If I hurt someone, I am aware, and it hurts me too.
*When I speak in front of people I get a rash all over my neck.
*I don’t watch rated R movies. My husband and I walked out of 2 about 10 years ago, and we never looked back.
So there you go. Completely random things about me. We are totally BFF's now!
Thursday, February 11, 2010
Translation: I understand I am crazy.
Yesterday, after my shower and the mandatory make-up regimen…I gave myself the final look in the mirror. You know, the one we do to size up the situation. The final check before we run out the door. Usually, I am satisfied with the final check. (I have really low standards,) and I start my day.
But yesterday, as I peered in for a looksie, all I could think was, “Dang woman, you look like hell.”
Even after my regimen, I looked tired and gaunt. I chalked it up to maybe starting to catch the cold the boys have…but as I ran out the door, and did another check in the entryway mirror (hoping the results would look better with more natural light,) I was startled that I was in such bad shape.
I added a little more makeup…trust me when I tell ya, it didn’t change things.
The bags under my eyes were there. The paleness was still there.
I thought about the last few months as I ran out the door. I was on my way to take the boys out of school to go to our tri-yearly endo appointment. I brain scanned over the past few months and knew that their A1C’s would be the best they had ever been. I had put in more effort than ever before. Inspired by my blogging community, I made changes and had a goal to keep the boys in the 100’s as much as possible. (which is stupid, because diabetes does what it wants,) But I was as vigilant as diabetes would allow me to be.
Hence the dark circles under my eyes.
It is exhausting just thinking about the last few months. I told my SIL as we drove up…I’m expecting amazing A1C’s, and at the same time, I fully expect to be disappointed.
Here was my theory:
No matter how hard you work, diabetes is going to do what it is going to do, so you need to find the place where diabetes is important…but not the only all encompassing thing in your life. I always felt, once you find a comfortable place, stay there. I don’t like obsessing about numbers. I don’t think it is healthy.
But the last couple months, I’ve been a bit obsessive. And I’m mentally, and it seems physically exhausted because of it.
Secretly I hoped that their A1C’s would be the same as last time, and I would prove my theory that I didn’t need to obsess. That I should go back to being super laid back about it all.
Their A1C’s were freakin’ amazing.
Which in an absolutely loony bin kind of way, depresses me to no end.
How will I be able to keep the momentum going?
Keeping them in that range meant fighting many more lows. Which I don’t like. Which I think is somewhat responsible for the life that was sucked out of me this last month. You can’t have a 6.5 A1C without fighting lows.
And we all know how low’s suck.
I need to find my balance.
I need to control without obsessing. (Is that even possible?)
I guess I’m just overwhelmed about the upcoming next few months. My boys had wonderful A1C’s this month, but it came at a cost. And I’m feeling guilty that I am even thinking about the toll it took on me. Because I’m just in charge of all of this for a short while…they are the ones that literally have to live as diabetics forever, (or until there is a cure, but good hell, who knows when that will happen.)
Anyway, I made some goals, and they are to:
* Not obsess.
* Adjust basals and ratios so they don’t have too many lows.
* Have J carb count himself…to give him freedom, and me a little more room in my brain.
* Make things like blousing before they eat routine.
* Take care of myself. (An example of this might be not eating to help myself get through emotionally.)
* Make sure the boys are happy and as self sufficient as they can be.
I know!! It’s like I’m asking for the moon!
I’m sure I’ll be more optimistic after I recover from the 4 hours at the endo yesterday. It's just, Fan-Freakin-Tastic A1C's should feel better than this, right?
Man, I got problems.
Monday, February 8, 2010
“Oh ya, I forgot, the bench in your car is broken, we’ll have to take 2 cars.”
“Oh ya? Oh ya? That is how you tell me…’by the way, the bench is broken’??”
“It’s not a big deal,” he says…”It is still under warranty.’
“No big deal? No big deal? (Ya, I repeat myself when I am in disbelief.) Do you have any idea how that is going to affect my life for the next week?? It means HOURS at a dealership, of which I’m not sure even exists, (we have a Saturn,) where they will tell me they have to “order” a part, which means a return trip to the dealership for hours of waiting! Not to forget, I NEED those seats to carpool kids!”
My husband looked at me like I was nuts. I don’t blame him. I was on the verge of a breakdown.
This is where I looked down at a spoon that was in my hand that must have magically appeared, because I don’t remember how it got there…
And I threw it into the sink.
Where it made a HUGE KERPUNK because our sink is stainless steel.
My husband was baffled…(wherein lies the proof that men are COMPLETELY different than women.)
As we sat in silence driving to my in-laws I turned to my husband.
“You know why I’m crazy? You want to know why little things like a broken bench throw me for a loop? I live on the edge of a cliff. My toes are hanging over the edge of that cliff. The broken bench didn’t put me there…I’m ALREADY there. You could throw a feather at me, and that is all it would take to fling me over that edge. The LITTLEST of things can tip me over. So that broken bench, was like a Karate chop to my back. A girl can only stay stable for so long. A girl can only keep her balance on the edge if she doesn’t have things belting her on the back of the head to throw her over. I’ve spent my life on this ledge. Sometimes it’s sunny and calm, but most days it’s windy, and I have a hard time keeping my footing. Do not throw things at me while I am on the ledge!”
My husband nodded. He made a comment that let me know he understood what I was saying. He winked at me and gave me the smile. The smile that always puts me right again.
And when we got to my in laws, my sweet husband fixed the bench on his own. And he saved me from a week of “extra stress.”
Sometimes I close my eyes, and live my life pretending I don’t live on that ledge. I pretend all is fine and my life is as normal as all get out. But then something small happens and I lose it. And I’m forced to open my eyes and see where I live emotionally.
That is why little things break us. We are like sticks, bent to the breaking point. We live everyday with tension on each end. All it takes is a small amount of pressure to break that stick.
SO ya, I WILL throw a spoon when the bench breaks.
I will cry when I read posts about Oprah and Dr. Oz fricking up the worlds view on Diabetes.
I will crumble when small things get thrown my way.
Because I am there…on the cliff…living every day on the edge. It is a perilous place to be, but if I’m able to keep my footing, and dare to look up from my toes that cling to the rocky cliff…I can actually take in the view…
And it is breathtaking.
Friday, February 5, 2010
First, we drove down the 101 to get to the Golden Gate Bridge...
Then we got mugged by the City of San Francisco as we were forced to pay $6.00 toll for the honor of crossing said bridge...
Then we drove up the wet your pants hill, (which these pics don't do justice for,) and passed all the fancy houses until we took a right at O'Farrell...
We sat for over an hour getting info about the Medronic CGM for J. We learned how to read the info, and how to troubleshoot the alarms. Unfortunately, when you put on a new sensor you can’t get information from it for a couple hours. Once the sensor has time to adjust to your body, you can then check your sugar and calibrate it…THEN it will start giving you numbers.
And when that first number popped up…NIRVANA! It was magical. I can’t even tell you the excitement that filled the room. B was nearby and was in full covet mode.
“I want one!!! When can I get one!!!”
“If we get one it will be for all of you boys honey. You’ll get to wear it sometimes!”
“No thanks, I’ll take my own.”
It so far has been about 20 points off from his finger stick blood sugar readings. It alarmed this morning on a low…AND… Woke. J. Up.
We were told at the doctor’s office in no uncertain terms, that we should NOT test J's sugar less this week. (What ev’!) If Lawton alerts, and J’s CGM says he isn’t close to low…I can skip him and check the other boys.
I want to look at his pump ALL THE TIME.
“What does it say now J?”
“J, where are you at now? Are there arrows going down or up???”
I had to back off last night…I was beginning to annoy him. And the novelty wore off pretty quickly for J. He was jumping up and down in the beginning…and then later when asked how he liked it by my Mother in Law, he was like, “It’s alright.”
He’s only been getting readings from it for 16 hours, and already I have gleaned some pretty interesting info. J wakes up in the low 90’s every day. (Sometimes as low as 60’s) I haven’t worried too much about it, Lawton usually wakes me if he gets to the 60’s…but last night I was able to see that he is fine until about 5:30am and then he crashes. In one and a half hours he dropped 80 points. Very interesting!
So there it is, a half day of info and me likey. I kept thinking about how nice it would have been to have this when J was a baby. When he napped I could have looked at this and gotten a better Idea if I needed to risk waking him with a check or not. I don’t know if this is a successful system for really little ones…but man, wouldn’t it be awesome if it was????
We get to keep this until next week. If we are fully committed to using it, our doc will pull the necessary strings for us to get our own.
So far…it’s a go. (((silent squeal of happiness)))