Health care is a basic human right, not a privilege. For some reason, we’ve allowed ourselves as Americans to be fooled into accepting that one must be blessed with “means” to actuate appropriate health care. As a nation we have failed to realize that our health care system is a barometer of our society’s value for human life.


Thursday, November 30, 2006

Why I Hate Rufus....(At Least a Little)

Rufus arrived in the mail today. A few of you, Im sure, know who Rufus is. Rufus is the bear with diabetes. I called the Minnesota chapter of the JDRF a couple of weeks ago and requested a bag of hope, and $7.75 in postage (paid for by JDRF) and a couple of weeks later, here comes Rufus the bear with diabetes and a load of other stuff.

Gracie is THRILLED about her bear with diabetes. We read the book and she was so excited because it was about things she has to do, too. She loves this bear already. And I think I might hate it. I mean, I love what this bear has given my daughter, but every day in my daughter's damned honeymoon scares me more and this Rufus just nails in the bitter truth of her diabetes reality. Ick. I've been off and on tears all day. I thought I was over this, but endocrinologist (not for me but for her) and stupid diabetic bear is way too much reality for this reality stricken mama in a week.

We are not really dealing with a full three year old diabetes reality yet. Gracie doesn't take insulin with meals yet. She doesn't need a medical id bracelet, yet. She takes a tiny amount of lantus at bedtime, 1/2 unit. We have one glucagon kit, but she really isn't in danger of having a low. We don't count carbohydrates for her and we don't really watch what she eats. See what I mean about not being in full three year old diabetes reality? So it is easy to fool myself that it will stay like this forever. I joked at the doctor's office that a honeymoon of ten years sounds just "perfect." I can handle a shot at night and 4 - 6 pokes a day. I don't want to do more. I don't want to watch her sugars rise. Thus far each day they are mostly normal, and subsequently I am mostly okay.

Ick. I cannot adequately express the fear this ick is, or the pain this ick is, or the sinking feeling this ick is. It just is. And this bear is proof that this isn't going away and this isn't going to get better. This bear is a punch in the gut. This bear is forcing me to face eventual truths. And I just don't want to. And I'm not sure I can. And I don't want to feel what I will have to feel to get where I need to be to accept this. I'm not ready.

Every reading that isn't right: 164 after dinner last night (groan), 139 this morning (moan), 153 at 2pm on Saturday...Her random readings that show that at least randomly, she isn't staying normal, this isn't going away. This bear is here to stay.

he is kind of cute. I won't chase him off. But damnit, I think I'm gonna pout for at least another night....and thank GOD that bear doesn't expect to sleep in MY ROOM.

Wednesday, November 29, 2006

Lost But Not Stolen

I am the biggest dummy ever.

I received a phone call this morning at 6:30am (WHAT!!???) from the school office (which apparently opens around 6 am). It turns out I left behind my brifcase in the school cafeteria. It makes sense, really. I had brought my briefcase in with me when I picked up Sandis because I needed to give KidStop a copy of his final diagnosis & recommendation paperwork from the U of M. Thing is, I DISTINCTLY remember bringing the briefcase back out with me. I also remember locking my car doors because of said briefcase when we all went into Walgreens after picking up my son. I remember glancing at my briefcase right before going into Panera bread, deciding inwardly whether or not to lock the doors as we went in. I looked at the briefcase, pondered certain irritation when the kids ran all over the parking lot as I unlocked the doors after dinner, and decided to not lock the doors. After dinner we get in the car, and guess what? No briefcase.....

My memory is LYING to me! What the hell? I remember so clearly looking at this briefcase before going into Walgreens and before going into Panera bread. It just wasn't there. Hmmph. I can never trust what I see again. Stupid stinking briefcase.

I am happy to have it back. But.....Yesterday after Gracie's endocrine appointment as I walked back to the parking ramp OVERFLOWING with medical "stuff" for Gracie, important documents folded and stashed here and there so I could find them later, I decided that no briefcase just wouldn't do.

So I bought a whole new setup. It is quite nice really. There is the blue pad holder that has a six spaced expandable file. Then there is the red pad that although it has no expandable file (blasted target the blue one was the last one) it does have plenty of space. Interestingly enough, Gracie and her type 1 diabetes takes up less space than Sandis's autism spectrum disorder. To pull it all together there is a monthly calendar and a nice nice (but not leather) over the shoulder bag to hold all that crap in. Check it out......

It is just big enough and just tidy enough to replace my holey moley green backpack that I bought for 3 bucks at walmart two years ago....I think I have climbed a few notches where my professional appearance is concerned anyhow...

But, now I also have my super nice, sheek black leather briefcase. I figure this briefcase is just gonna take a vacation. My new setup is far superior, although not quite as velvety..I really needed this though. Even with the old briefcase, organization of all the documents for FMLA, med records, appointments, treatment plans, contacts, business cards...ick....ack....was just stacked one on top of the other in no real order. Now I can organize and have everything pertaining to that one child at my fingertips.

Oh, and I bought it all at target for 54 bucks...Not bad eh?

....Not bad for a dummy....

Tuesday, November 28, 2006

Finding Peace with Diabetes (a Three Year Old’s Perspective)

What does having diabetes mean to a three year old? How does a three year old deal with a new diabetes diagnosis?

As a 28 year old diagnosed at age thirteen, I can tell you what diabetes meant to me at that age and how I dealt with it. Diabetes meant that I would have to have a series of pokes (daily). Diabetes meant that I would be on the same turf as my mom, and I would start taking insulin shots. Diabetes meant that nothing would ever be the same. I dealt with the diagnosis by learning more about it. I read books. I asked my mom a LOT of questions. I pouted some. I asked my doctor questions, and I pouted and cried some more. I then threw myself into my treatment, working hard to eat according to my exchange diet (haha! Remember those?), take my insulin as prescribed, and record record record.

Looking back, diabetes meant that I was going to have to be poked a lot. I dealt with this by grieving, and learning more about the disease through research and asking questions. I dealt with my new diagnosis also by taking control of what I could, and managing my disease as best as I could.

How would a three year old do this?

You can ask Gracie this today, and she will tell you: “Diabeedees means I get to get poked in my fingers and my bottom.” So, well, that’s pretty much the same eh?

What about the coping skills of a three year old? How does she grieve? How does she learn about it? How does she take control of her situation and her diabetes?

That’s a tall task for any three year old! I think about this and even I feel overwhelmed. It must be so confusing for my little Gracie! All of the sudden, after some loud tears from mum, she has to get poked, A LOT! So how does she grieve? I think she cries, and I think she pouts. I think that is okay. How does she learn about it? She learns about it from me, from what I tell her. That is a huge responsibility. I am her sole resource for learning (other than the 1 per 90 day visit at the endo.) Considering how important learning was for me at my diagnosis, being the sole learning resource for a newly diagnosed peanut is a tall task.

Lastly, how does she gain control over a situation that has very few things she can control? She can’t give herself shots. She can’t even draw up the shot. She CAN go get me the insulin bottle. She can pick where she wants to lie on the floor when we give the shot. She CAN put the strip in the meter, and she CAN look at the number and talk with me about it. She has control over these things. But she needs more. How do most three year olds learn? Through PLAY. My daughter needs to be able to act out what is going on in her life. My daughter will get the control she needs through play.

Isn’t that a novel idea? It isn’t all that novel at all, actually. I thought it was, but they have these Child Life Services employees at Children’s Hospital for which control through PLAY is damn near gospel. Today they gave my daughter a Medical Play Bag. Complete with dolly, play syringe (no needle), medical tape, cotton balls, band-aids, alcohol swabs…..You name it, it is in there.

You can not even believe how awesome it is to give the control back to my peanut. It is so scary to be in her world, and she just doesn’t have the tools to really understand. But we can all help her learn, and we can help her find her peace. The peace she can and will only find in play.

Monday, November 27, 2006

The Missing Black Briefcase (Missing as in Stolen!)

My black briefcase was stolen today. It was a very nice briefcase. My uncle had given it to me. It was a black leather (oohh so soft) zippered briefcase. It was beautiful.

I didn't carry any money, checks, identification, or other items of monetary value in my briefcase. It was a beautiful briefcase that housed nothing else but a history of my children's medical records. My briefcase was a plethora of doctor's visit notes, FMLA paperwork (and then more backup paperwork), long-awaited final diagnosis write-ups, and treatment plans. My briefcase contained day-by-day, event specific notes concerning the grand IEP pursuit.

My briefcase was important.

I looked around for my briefcase peeking into dumpsters (from my car, it was dark and there is freezing rain) hoping to see it abandoned by the fools who wagered it perhaps held some cash, but no such luck. I hope the thieves who stole it, upon realizing that there was nothing good for them in my briefcase, feel as foolish as I do now, as I kick myself for not locking my car that ONE time.

You know, aside from my day-by-day event specific notation concerning my son's IEP, everything in that briefcase can be replaced. But damn, that information was important to me, and I had it organized just so. It pisses me off that someone I don't even know has access to my pumpkin's very personal autism diagnosis and history. It pisses me off that I need to go back to HR to request a copy of the FMLA forms I provided for them. I like having my own records, and I like having them with me pretty much at all times (until it is time to grandfather them to the filing cabinet.)

Ah well, better my briefcase than my purse, eh?

Saturday, November 25, 2006

A Few Good Things (from the Past 30 Days)

Just in case you were thinking that my life is like network t.v. dramas, I figured I would fill all of you in on some of the good (and completely undramatic things) that have happened in the past 30 days......

1. My son got strep throat, and I didn't!
2. I rearranged my living room (yes I admit to being a rearranger cleaner) and it quite possibly looks the most awesome it ever has!
3. Bob drove the distance to my family farm in his car (rather than me in mine!)
4. After Bob drove the distance, my grandma and unclenauntie gave us 30 bucks to help with gas. Guess how much it cost to fill up as we head out of town? 29.99 baby. How cool is that?
5. My daughter overcame her fear of living breathing animals (up until now anything, including kittens, evoked a curdling scream) over thanksgiving at the farm, and even ran up to and fed the horses.

6. I got a picture of Bob loving on a kitten.

7. Bob went hunting with the men of the family. His first time ever hunting, and he came back smiling! Us women were a little worried......
8. I spent some serious gabbing time with grandma, auntie suzie, auntie carla, and Cousin Ronnie (who by the way, is 22, and the last time I saw her I think she was 11..!)
9. I had ice cream.....and cookies.....For dinner today......Words cannot explain how perfect that dinner was.
10. I started my christmas shopping.....and although I could not find that deluxe chess set (table) I was pining to buy for Bob-The-Babe (Builder) I did find some really really really cute stuff for the kids. And so it begins!

Happy Holidays Folks and I hope we can all find reasons to be happy in the little things, because although the big things may be defining moments, they do not define our lives quite so much as the many small things we often take for granted!

Tuesday, November 21, 2006

Classroom Observation

One thing that I have decided to fit into my schedule every month, for at least two hours at a time, is classroom observation. Helping my son at school and helping the school help my son is a huge deal to me. I hope that by observing my son in his classroom, I will get a better feel of what he is encountering during the day. I hope seeing the situation and environment he is in first hand will help me to understand what the school and teacher recommend and enact as aides to him. I hope that experiencing his classroom will help me to come up with my own ideas that fit within his day to help make day to day activities run that much more smoothly for him. I want to make a difference in my son’s education, and I really hope this will be a key part of me understanding and effectively assisting him with it.

I volunteered today in Sandis’s classroom for their “Friendship Feast.” Holey smokes man, if you have never spent a couple of hours first thing in the morning (before breakfast) hanging out and helping to direct 20 some kindergartners, I don’t recommend it! That being said, it was really fabulous. The kids were sweet. I was there from the start of the day, and I actually got to sit down with Sandis as he ate breakfast. He pointed out a boy in the lunchroom during breakfast who apparently picks on him. Sandis got to show me around HIS town, and I think he enjoyed it.

This was my opportunity to see Sandis interact in the classroom. This was my first time in the classroom not only to volunteer, but to see Sandis in action. I have to say, there were moments where I wanted to walk out, take to a corner, and cry. It was painfully obvious in a few instances just how different Sandis is from the other kids, and how ostracized he can be in these instances by the class. There were other times, though, where he blended in and was just another kid. I let those times calm my heart.

I never wanted Sandis to be different. I think that my desire to have him be just like everyone else really blinded me to what was really going on with Sandis’s development. No one ever wants their child to be the one with the developmental delay or problems. It isn’t something we wish for with child still in utero, marveling over baby kicks in mommy’s ribs. Accepting this difference in Sandis is very hard. I know it will bring him pain in his future. I know that there is more burden on me to protect him from that. Sometimes that burden is very heavy.

The thing is though, I didn’t wish for this, but I’m not sure I’d change it. My son is fabulously quirky. He smiles often. My son could not conceive of bullying another child, he does not have a mean bone in him (just don’t ask his sister about this!) My son has focus that exceeds most others abilities when it comes to things that interest him. My son started running when he started walking, and he has never stopped. He will never stop! My son is a blessing of insights and joys that I would not have if he were not exactly as he is. My son is not a mistake, he is a gift from God exactly as he is supposed to be.

I will be in Sandis’s classroom next month, and I imagine it might be hard again. I hope it will get easier. I kow though, that he needs me there, and I need to be there to see him. Seeing my son’s differences makes it easier to go through all that red tape the education system puts down in front of his IEP. Seeing my son’s differences makes me appreciate them that much more.

On a final note, the other night I asked Sandis: “Did you pick mommy? Or did mommy pick you?”
Sandis without hesitation says: “ You picked me mommy! Silly!”

And you know what? He’s so right. I did pick him. I would pick him again. And again. And again. He is mine and I am his and we belong together.

Sunday, November 19, 2006

Some Changes in My Blog Town (or More Accurately, a Few Changes on My Blog Only)

I've changed my Blog description and my profile description on blogger. I really just felt that in light of the past few months, with running pretty much falling off the radar at least for now, that they weren't accurately describing myself and my blog.

I thought about changing the title of my blog, but I love the word nefarious (Deviant Poop).

On Friday, the word was in from the U of M concerning Sandis's final diagnosis. For now, PDD-NOS was the word. The psychologist did explain to me that Sandis scored very high on the Aspergers Syndrome Diagnostic Scale, but that without a cognitive evaluation to show that he has an average to above-average IQ, she cannot make that diagnosis. We will have a cognitive evaluation done by the school and pending the results, she may change the diagnosis to Aspergers in the next few months. Regardless, PDD-NOS is sufficient diagnosis to ensure autism related services in the schools for Sandis. And that Rocks.

I have found the community of parents and caregivers of autistic youth to be wonderful. There is also an abundance of programs for developmentally disabled children through the county and city, and even local charities. The unique challenges of children that fall under the umbrella of PDD disorders are really being met, at least in my case! I wish I could say the same for type 1 diabetic children and their families. Maybe that is something I need to look into trying to organize. Perhaps I just haven't had the exposure to the right programs yet because Gracie's care is in the cities and there is only ONE pediatric endocrinologist in Saint Cloud (who is impossible to get into in any timely manner and does not have the diabetes support team behind him/her so it is kind of silly to seek treatment through him/her anyhow).

Bob bought me two books, Ten Things all Children with Autism Want You to Know, and Aspergers, the Universe, and Everything (which is written by a ten year old boy with Aspergers).

I am going to the family farm for Thanksgiving, leaving on Wednesday night. It is our first time back to the farm since both of the kids's diagnosis. I am doing things a bit differently with Sandis since diagnosis, and I am worried about flack I might get. I am just nervous in general. My family is very supportive, I don't know why I worry.

I have spent most of the day cleaning and doing laundry. God, I love Sundays.

Saturday, November 18, 2006

Circulating the Three MeMe

Meme of Threes

Three Things I Do Every Day:
Test my Blood sugar, Test my daughter's blood sugar, Kiss my Kids

Three Things I Wish I Could Do Every Day:
Wake up refreshed, Run, Eat a plate of cookies with no weight gain consequences

Three Hopes I Have for Today:
I hope I get my laundry done, I hope that I can go to Barnes and Nobles, and I hope I get plenty of kisses and love from my kiddos

Three Things I Hear:
Spirit (the movie), my fan, keys clicking

Three Ways I Have Changed my Life:
Stopped using fentanyl and benzodiazepines, Ran two half-marathons, learned to shut up (sometimes)

Three People I Wish I Could See Again:
Sonja Jaramillo, Grandpa, jello Biafra (although doubtful)

Three Items I Wish I Owned:
A home, an engagement ring, a new couch

Three Wishes I Had When I Was Young:
To make a positive difference in the political world (ick!), to be an engineer, to be known as the smartest woman alive

Three Fears I Have:
The death of one of my children, The death of one of my parents, My car breaking down

Three Things on My Desk:
ky jelly (haha, and I'm not even joking), my cell phone, and my camera

Three Thoughts in My Mind:
I'm tired, Do you remember that cartoon "THE CRITIC"? He has a part in "Spirit"., I wish I had a maid (and I don't even care if he is hot!)

Friday, November 17, 2006

Blessings Come From Unexpected Places (At Unexpected Times!)

Yesterday, as I was feeling sad about my son, something pretty awesome happened.

For the past few weeks it has been especially apparent to the people at work that I have been under some stress. It has been apparent in my attendance. I haven’t made forty hours in a few weeks, and I didn’t even make THIRTY last week! It has been apparent in my dress, as I am less motivated and I have less energy to invest in looking put together and professional. It has been apparent in my work as my abilities to focus on the task at hand has varied, depending on which crisis I am currently dealing with. They have watched me hold back tears at my desk between jobs, and they have watched me rush out and then rush back in between doctor’s appointments. They have answered my phone at my desk so I wouldn’t miss a call while I was in the bathroom, and they have overheard my COUNTLESS phone calls to doctors, social workers, and school officials. They have watched me try to hold it together for at least the past month. I thought I was doing a pretty good job, but I think they figured out I could use a hand.

At lunch yesterday, as I came back from rescheduling a psychiatry appointment for my son (I have to use my cell for long distance), they surprised me with a card. Completely Unexpected! I didn’t even want to open it, I just burst into tears. I have been trying to hold it together for a long time, and things are finally easing up, but I didn’t expect anyone to try and help me. It was a nice card indicating that they were thinking about me, signed by each of my coworkers. Inside was a key to a workout room for an apartment building across the street from me (thanks P!) and there was a gas card. A ONE HUNDRED DOLLAR gas card.

They couldn’t have chosen something better to help me with. They couldn’t have done something nicer. Sometimes, when things are hard, people will surprise you. I’m feeling pretty good about home life, and family life. We are still having our struggles, and really, those will never completely go away. It was nice to know that people around me, the people I see and work with everyday, recognize that I am really struggling to hold it together. It felt really good. It reminded me that God is in my life, and he is working his miracles to give me all the tools I need to keep going.

Sometimes, Blessings just come from the most unexpected places, at the most unexpected times.

If you are a coworker of mine, and you are reading this, A THOUSAND THANK YOUS!

Thursday, November 16, 2006


I just don’t get it. Really I don’t. I imagine what goes through a bully’s mind, and well, I can’t even imagine it. Perhaps, even, the things I imagine going through their mind are just too terrible to conceive of a child thinking. Or perhaps, with my 28 years of maturity (or lack of), I just can’t imagine dealing with emotions at a nine or ten year old’s level. I just don’t get how, no matter who you are or how stressed you are, beating up on a little boy who is younger than you is going to calm the storms in your mind, be they small brewing storms or large destructive storms. I just don’t get it.

Right now I am having problems with bullying. More pointedly, my son is being bullied.

He is being bullied at the bus stop. (Before School)

He is being bullied in the bathrooms and on the playground. (During School)

He is being bullied at Kid Stop. (After School)

On Monday morning, my son didn’t want to go to school. Well no freakin wonder, I wouldn’t want to go to school either if I was being physically and emotionally abused before, during, and after school. It sucks. No way man, I’m sick, I think I will stay home. This SUCKS.

Yesterday, my son came home with a black eye. Granted, it isn’t the biggest or nastiest or most swollen black eye in history, but it is definitely there. There was no note and no phone call to accompany this black eye. Nothing.

It turns out that an older kid at Kid Stop pushed Sandis into the mirror in the bathroom. Sandis doesn’t know who he is, but he rarely knows other children’s names anyhow, even if he considers them his friend. He didn’t tell anyone about it, either. I didn’t notice until later that evening, when I got close enough and done enough with chores to really focus on him. Imagine my surprise when I realize his left eye is all swollen, lined red, and has some bruising underneath. It just sucks, not just for him, but for me too. It sucks for me because I can’t imagine, or I CAN imagine what being hit/pushed/kicked at school on any type of regular basis feels like.

I bet it makes him feel worthless. I bet it makes him feel unimportant. I bet it makes him wonder what is wrong with him. There is a whole range of feelings I bet he feels, and it makes me sad that he has even had an opportunity to feel this way.

I know how awesome my son is, and I know that these kids who are doing this don’t have the ability, for whatever reason, to get to know him well enough to know how awesome he is. I know that there is nothing wrong with my son, and that no matter what anyone says or does, no one ever deserves to get hit, kicked, or pushed. I know that, and I hope Sandis listens when I tell him how important and wonderful he is.

I get to spend yet another day calling social workers, school affiliates, etc…..And I shouldn’t have to do this. Because, you know what? This sort of thing just shouldn’t even be an issue, EVER. It’s a shame it has to be.

Wednesday, November 15, 2006

Today is Good

I don’t have a whole heck of a lot going on today, other than work and laundry. Maybe I can get by without doing the laundry? Probably not….

It is nice to know that I will not be running around the world and back today, but it might feel like it a little, because I still have to make dinner. I’m pretty tired, I wish we could just have like cookies or something for dinner. Work today I have been able to focus on “working” rather than on my next phone call either scheduling a therapy evaluation or talking to a social worker. I finally feel like I am not going to come unglued. I finally don’t have the sneaking suspicion that someone is trying to unglue me. Life is evening out.


This is okay, now if only I could wake up! I have abandoned my no diet soda idea I had and practiced for so long, and I really need to get back on the tea wagon. My hydration is suffering! I woke up a little early today and while the kids ate breakfast, I drank a cup of coffee that I brewed myself (with the aid of a coffee maker.) It was nice to sit and talk with my children this morning. I need to wake up early every morning. That would help my rushed, crabby, yelling normal morning routine.

You know that reality shift I was talking about a few days ago? I think I am settling into it now. My daughter told me after her shot last night, “That didn’t even hurt Mom!” Woohooo for small victories eh? I asked her what having diabetes means, and she said “It means I have to be poked.” Ya well, we’ll work on that one, but for now, that really is what diabetes means to her. Her blood sugars have been doing really well, which is calming for my soul. For a few days they were running 130-150 and my heart was doing baby jumps and dives every time I checked her blood sugar, hoping that they weren’t moving on up. They’ve evened out these past few days though and aren’t going over 130, which is relieving, because the full reality of a type 1 three year old is not something I feel ready to jump into. I probably never will be ready though!

I found a local Autism Parent Support Group at the Saint Cloud YMCA that has FREE! Babysitting so I am going to go to that, tomorrow. I can’t get there fast enough. The caregiver community for autistic children has been wonderful and has not skipped a beat in embracing one of their newest members. There are all sorts of programs for caregivers of developmentally disabled children, so I feel like a path has been made for me. It is a little bit different for parents of type 1 kids. There are programs that help parents find respite care for their autistic child, but respite care for their type 1 diabetic child is not available. I can imagine that finding a babysitter (qualified babysitter) to watch a type 1 diabetic three year old is just as hard to find (if not harder) than a six year old with PDD. I’m waiting for some info from JDRF and I’m contacting my local diabetes office and “hoping” to meet some other parents of type 1 children. Maybe we can all help eachother if our needs fit and we can reciprocate help?

Overall, things are just doing much better and I am feeling much more suited to the task at hand. I think that God paired my beautiful son and my beautiful daughter with me specifically for a reason. It is easy for me to understand, perhaps, why my daughter would do so well with me, but I have more trouble understanding why I was chosen to be the sole provider for a little boy with Sandis’s specific needs. Why was I chosen to be the best person for him, and why was he chosen as the best person for me? I guess I need to trust in God that I have what it takes, and if I don’t, I will take the time to ask God for his help. I am truly blessed with my children, and I have learned SO MUCH in the past few weeks. I couldn’t have asked for more.

Tuesday, November 14, 2006

Why Won’t They Call Me Back?!?!

Okay, I’m having a problem. And seriously, it is pissing me off. Lately, just about everything pisses me off though, so I had to really examine this issue to see if it was worth, well, being pissed off about. See the thing is, I can’t get people to call me back. I don’t care if they get ahold of me so much (well I do but that isn’t the point) as knowing that they have made at least one attempt, within 24 hours of me leaving THEM a message, that they have tried to call me back.

Through the course of one day, I usually attempt to contact at least one social worker, at least one nurse, and at least one doctor. I usually attempt SEVERAL times and I often leave SEVERAL messages, depending on how pressed I am feeling to communicate information to them and have information communicated back to me. I receive, on average, one call back per day. And it usually isn’t the one person I REALLY wanted to get ahold of.

Anyone at my son’s school is a prime example of this. Frustrated by my son’s current circumstances with the school I tried to get in touch with the school social worker several times yesterday. I left one message at 8:30 am and then left another, with the school secretary at 3:30pm. I gave her hours and hours and hours to leave a message at one of my THREE numbers (work, home, cell) and I got NOTHING.


Ick. I can’t tell you how icked that makes me. I do understand that I haven’t given her a full 24 hours, but I was feeling hard pressed yesterday to speak with her, and she didn’t call me back. Ick.

Now going to my son’s teacher. She is fabulous every time I do manage to corner her, but I have taken to interrupting her lunch break in the teacher’s lounge because the woman just does not call me back. And if she is calling me, she isn’t leaving me a message, which would be a crying shame because her not calling me for several days despite me leaving her a daily message really ticks me off.

Ticks. Me. Off.

So, outside of me being a total nag and losing my hair over this crap, how can I get these people to call me back? I’m not even gonna get INTO getting a doctor to call me back, that is a whole new entry right there!

Monday, November 13, 2006

Tender Confidence

Tender confidence is a newly acquired self-confidence. It is a confidence whose length of stay and strength is largely determined by the flux of events, and whether they support this new confidence or whether the events and occurrences of daily life sabotage the roots of this confidence.

Every confidence my son has is a tender confidence. His is a new confidence that is entirely reliant on others, entirely reliant on how his day is structured and molded to fit his needs. His confidence is sensitive to his reality and whether that reality is overwhelming, underwhelming, or dually calming and intriguing.

My son experiences the world differently than anyone I know, which makes his confidences very hard to build up. A plane flying overhead to me is perhaps a buzz in my ear and a sight far away. A plane flying overhead to my son is a wingspan that fills his mind, an intense vibrating noise that fills his ears, and a call to attention that supercedes EVERYTHING ELSE. A large spacious room with plenty of light is perhaps uplifting to me. A large, spacious, and bright room to my son evaporates any layer of security and comfort that had previously blanketed him. This room makes his fingertips tingle, his mind race, and his body sway and spin to accommodate all of this space. My son experiences the world so differently, and he deserves every right to succeed in this world, even if he feels, sees, hears, and understands everything a little bit differently and more intensely than the basic breed of human.

Sandis understands that he is different, he knows and he TRIES to not be different. But he just can’t stop, and why should he? If someone made you try and STOP being the very things that make you YOU, would you struggle with this? Would you even want to try? Sandis’s confidences are built on the tenuous relationship he has with how to experience the world in a socially appropriate manner.

I watched my son begin school overflowing with this tender confidence of his. I watched his eyes brim with excitement of what was to come. And in just over two short months, I have watched his hopes be dashed. I have watched his school deny him an IEP process until I receive an official medical diagnosis. I have watched, in this month and a half since beginning his evaluations at the U of M, as my son has lost each and every friend he had managed to garner. I have watched him come home in tears because what few accommodations that HAVE been made for him outside of an IEP were ignored because they were not communicated to a substitute teacher. I have watched his behavior become so unmanageable at his gymnastic class that I was greeted with an ultimatum, get him an aide or he can’t come back.

In short, I have watched his school fail him. I have watched and I have failed, as well, because I could and should have done more, but really, I didn’t think it would get this bad just waiting an additional few weeks for that medical diagnosis. I guess I didn’t realize just how “tender” his confidence was. Now I and his school, we have to play catch up. We should have made appropriate changes IMMEDIATELY, not waited for more problems to come up. As soon as we found out Sandis was on the spectrum, we should have started specific interventions tailored to this diagnosis. It all made sense to wait then, but now it doesn’t make any sense at all.

My son doesn’t come by his confidences all too often or all that easily. He is quiet about what is hurting him, and he is loud about what he loves. You know that he is hurting much more when he is even quiet about what he loves. I let myself down when I let him down. I won’t let that happen again.

Thursday, November 09, 2006

Three Generations of Type 1 - From Mother to Daughter

How has diabetes touched me? How has diabetes touched my family? How has diabetes touched my mother, my father, my son, my daughter, my boyfriend, my friends, my cousins, my aunties and uncles? How has diabetes touched me?

I am so intimate with diabetes, that so often I forget it is there. I have such a close relationship with diabetes that I have been within touching distance of someone affected by it since my conception. Diabetes has so touched my life that I never thought having a syringe around the house was an odd thing. Diabetes is so engrained in who I am that it never even OCCURS to me to tell people I am diabetic. The truth comes out when they see my pump (pulled unceremoniously from my bra I’m sure), and were confused by my android hookup style I have going.

It occurred to me yesterday (all these realizations, my mind is full of Eureka! Moments) that with my daughter’s diagnosis, there are now three generations of Type 1 daughters in my family. My mom. Me. My daughter. That’s three generations, and I’m wondering how typical this is? There is an OBVIOUS hereditary factor going on with type 1 diabetes in my family. We don’t happen to have diabetes, we practically EXPECT to have diabetes. In fact, I do believe that type 1 overall in my family strikes the women and girls, not the men and boys. It’s okay though, because the men aren’t totally left out, they just get type 2 instead (Just when you think you dodged the bullet!).

My mom was diagnosed at age 11. I was diagnosed at age 13. My daughter was diagnosed at age 3. Wow. Three is just too young.

I wish I could be angry with diabetes, but that just doesn’t make any sense to me. I wish I could be bitter and unhappy with my association with this disease, but I just can’t. I don’t have the energy to be angry. Diabetes has always been there. Going down my family line, my Grandmother said that back in Norway there are gravestones from our ancestors that say on the tombstone “Died of the Wasting Away Disease.” Diabetes has ALWAYS been there. I’ve never known anything different.

Gracie will have an experience similar to mine as she will have to manage her disease throughout her life. Sandis will have an experience like my siblings did, just a little different because Gracie is so much younger than I was at diagnosis. You should hear their little mouths talk about “diabeedeees.” They work their little mouths and tongues and teeth around that word, and really they have no idea what it will mean in their lives.

Sandis asks me “When will I get diabeedeees?”
I say “Hopefully never honey.”
Sandis says “I hope I never have diabeedees and have to take shots Mom.”
I say “ Me too.”

Gracie tells me: “I don’t want diabeedeees.” (she follows this with a big HMMMPH, lip sticking out down to her toes and major attitude)
I respond: “Neither do I peanut, neither do I.”

We don’t have a choice. We are grudgingly making room for diabetes in our lives because if we don’t scoot over, diabetes will just sit ON TOP of us. And that sucks, really, trust me, it does.

Wednesday, November 08, 2006

My Reality Shift

I have come to the realization that in the past thirty days, my life and life circumstances have changed so much that I have actually experienced a reality shift.

A reality shift, for me, tends to be defined by the things that happen in my life, and a lot of times, they really tend to be health related. I'd say my first reality shift, where how I viewed the world and my surroundings changed dramatically, was after my sexual assault at age 13. My second reality shift, coming soon after the first, was my diagnosis with diabetes. Reality shifts after that would include things like: getting clean off of methamphetamines at age 18, going to college and failing MISERABLY at age 20-21, having my son at age 22, recovering completely from a burst appendix at age 22, having my daughter at age 24, graduating from drug treatment for fentanyl abuse at age 25........These are the major things in my life that have changed, at the core of my being, how I view, interpret, understand, and experience the world around me.

I believe that I can safely say that within the last month, I have experienced a set of new reality shifts. I have gone from having a set of wild and active, healthy young children to being a single mom of two (TWO!!!) special needs children. Two cihldren that qualify as having childhood disabilities and are protected from discrimination because of these disabilities. Two children that are going to intensely need an advocate, are going to intensely need a parent who is not just a parent, but a life support. Wow. It is just a lot to take in.

A couple of months ago, Sandis starting school didn't consist of whether or not the school lunch system can support a Gluten Free/Casein Free diet. A couple of months ago school was an exciting new adventure, rather than a LIST of highly inconvenient (although needed) doctors/psychologist/psychiatrist/therapist appointments. In September, I had no IDEA what an IEP is. Now I'm gritting my teeth trying not to be too overwhelming and abrasive as I am trying to ensure that my son gets all the tools he needs in school to succeed. It is so different than what I ever imagined, expected, or ever could have anticipated. So different....

Until this past week, things like training day care staff in the treatment and management of diabetes was not something that even crossed my mind. Until this past week, asking a diabetes educator if I can switch the injection site for my daughter's Lantus injection from her buttocks to her thigh until her skin heals would have been entirely out of context and my experience. Until this week, giving my daughter a shot, holding her down and physically restraining her to do so, never would have occurred to me. It just wasn't a part of my life or set of experiences. All the sudden, honeymoon is referring to something other than that marriage I've been fantasizing about for the past year (hint hint Bob!).

Things are just totally different. I feel fairly overwhelmed around 85% of the time. The times I don't feel overwhelmed, I am sleeping, or peeing (Who can think while they pee?).

I have been migrating to autism/asperger/pdd/parents of diabetic children blogs so much my mind is spinning. I read about children who are diabetic, who are past that whole honeymoon thing, and I really am not looking forward to more intensive insulin management for Gracie. I feel pinned to my job. What job wants to hire someone who has as many outside commitments I can't beg out of? Sure they can't discriminate, but even if I wanted to move to the cities and find work there, I wouldn't be able to shirk these responsibilities. I'd have to go a year without FMLA protection and I'd have a whole new school district to work with. Plus, I'd have to pay COBRA for myself and two young children. Now not one of us can AFFORD that lapse of benefits. I'm feeling pinned to Saint Cloud. I'm feeling pulled to the cities. After all, all the decent care for the conditions my children have is located where? In Minneapolis/St Paul.

There is a lot going on, and suddenly, I'm not caring too much about running anymore. I haven't been counting my calories for over a week, screw it, I have other things to worry about. My passions in my life seemed to have switched from running and islet transplantation and managing unforeseeable and unpredictable lows to diabetes advocacy, autism advocacy, getting the most out of your IEP, sensory integration, blah blah blah blah blah. Everything is changing, has changed.

And you know what? I realized today that not only have things been different lately, and not only has everything changed, it will never be the same again. I can never go back. I have had a complete reality shift. I am not certain I have had a reality shift as complete and as thorough as this since I first gave birth. This is that big. (If you are a parent, you understand just how big that is!)

So what now?

I learn how to change. It's funny how life changes and suddenly, something that was vitally important yesterday just isn't all that important anymore. Something came up. Lately, I have had autism and type 1 diabetes come up. I've decided that I am going to become a member of the Autism Society of Minnesota (and I'm even gonna pay the dues). I am also going to join the JDRF (and I'm not sure if I have to pay dues for that, anyone know?).

Just on a quick exit note, I'd love to share with you a note about Gracie. Her blood sugars are doing fabulously on just a 1/2u of lantus, staying perfectly between 85-115. I know it won't be like this forever but I'm crossing my fingers. Also, she has officially received a Type 1 Diabetes diagnosis. Tonight was her third night with a lantus shot. The first two nights I had to physically restrain her and she struggled so much and cried and screamed. It was pretty terrible. Tonight she laid down on my lap for me and cried a little, but did okay. She said: "Just a little poke mommy and then it is all over." I said: "Yep, Just a little poke and then it is all over." Until tomorrow, right?

Monday, November 06, 2006

A Call To Action (Insulin is NOT a Cure!)

Scott and Penny have lit the fire in me to write about how diabetes affects my life.

A month ago this post would have been a whole lot different. A month ago I would have focussed a lot on hypoglycemic events I can't feel and the constant variables and guessing that goes into diabetes. I would have focussed on the lifetime I've spent immersed in my disease and all for what? To maybe avoid some complications? To live in a life of highs and lows that constantly affect my emotional state and all of the dealings I have with anything and everyone?

But, in light of all that, I would have said having diabetes sucks but it isn't that bad. I can live with this treatment, for now......I can live with it for ME.

Everything changes.....

This is my daughter, and she is three and a half. She is the newest face to diabetes. She is 31 lbs, 33 inches tall. Her name is Gracie Ardith-Ellen. She has two awesome pinpoint dimples, and the darkest brownest eyes. She even has spiral curls that I think instill the very devil into her temperment. She is the newest face, delving slowly from prediabetes into diabetes. She is an example of a beautiful little girl with a very wrong and unmerciful auto-immune disorder. Take a good look.

My daughter had her first shot of insulin tonight, Lantus, 1/2 unit. I have been a type 1 diabetic for 15 years, and I have managed okay. But do you think that insulin was "good enough" when I gave her her first shot, and comforted her afterwards? Insulin is far from good enough. Insulin is NOT enough. Insulin does NOT solve her problems. Insulin will keep her from dying. That is all. And that same treatment that could keep her from dying could also aid her in dying. This is on my shoulders.

I have never been an advocate for a diabetes cure. I honestly don't believe I will ever see a cure. So why do I bother with this? Because insulin is not good enough. It is good enough for me, I can struggle with it, but it is not good enough for my daughter. That should tell you something about insulin treatment. Fifteen years I have used insulin treatment, and I feel nothing but despair when faced with my daughter also needing it. I have fifteen years experience of poking my fingers and taking those shots, and I am DEVASTATED by the understanding, the TRUE understanding, of what is to come for my daughter and how much her life will change.

My daughter can be anything she wants, even with diabetes, but the pain of knowing her struggles before she has them, is much for my heart to bear.

My daughter does not yet meet clinical diagnostic standards for diabetes. Her highest recorded blood sugar thus far is 177. Her 2 hr PP tonight was 174. Her AM fastings are typically 100-150. Her a1c is currently 5.5%. Her blood sugars are not getting better, they are only getting higher. I am a mother watching helplessly as her daughter falls prey to diabetes. There is nothing I can do to stop it. Nothing I can do to reverse this process.

All I can do is give her the tools she needs to manage this condition as she gets older. I know she is truly blessed to have a mother who is as active in her own personal care as I am. I know Gracie has a phenomenal role model in me, as I had in my mother. I know Gracie will take charge of her diabetes as she gets older. I know this, and I have faith that Gracie will be such a wonderful peanut as she ages that her diabetes will not be a factor. But I know, just as well as you know, that it will always be there, in the background. She will always have to work that much harder. And she is only three. She is only thirty pounds. She is not even three feet tall. She is not who you see when you see diabetes on TV, But she is our newest addition.

This month, I am going to get out of myself, and I am going to tell people about my daughter. Anyone who will listen. Because she is three, and she could be your daughter; she could be their daughter. This is what I am doing to spread awareness about diabetes this month, I am telling Gracie's story. I know it will touch people's hearts.

Perhaps you can tell her story too? Or maybe you have your own story to tell? The point is, get out and educate. There is NOTHING we can do to stop Gracie's diabetes, and there was NOTHING I could have done to stop my own diabetes. This is not a disease of bad habits, this is a disorder that deserves attention and research. Please, get out of yourself this month, and tell a story about diabetes. Get out and educate, because really, if you don't, Who will?

Sunday, November 05, 2006

Holey Smokes Man I've Been Tagged

It is a sign of the times, or it is just a November thing, or whatever it is, but it is. I have been tagged! I was honestly wondering if it would ever happen to me, so I tried not to YIP! with glee when purplehaze up and tagged me! I guess I pick five random things about me and then try and tag someone who hasn't been tagged after that so I guess here goes!

1. I HATE CHARTER!!! This is actually a new thing....But it really really really pisses me off. I downgraded my cable television service and all hell broke loose from there. They have not managed to get billing correct, they have not managed to get cable downgraded, when they do manage to get cable downgraded, they turn off internet, upon attempts to fix said internet problem, they try and have me PAY for them to fix THEIR screw up. I don't care what the hell it costs, this 7 or 8 phone calls over the past month (and 4 phone calls in the past three days) has cost me over 10 hours of my time and it freaks me the hell out. I cancelled today, and now I have entered AOL dial up land and I'm not sure if I'm happy about it. But i am freaking RELIEVED that I never have to call f******* charter AGAIN!

2. I am totally anal and rigid about my schedule. If something changes, I usually respond by getting pissed and stressed. I cannot handle schedule changes, so if you can't be here, well, you HAVE to be here because my coping skills concerning change are basically nil.

3. I never graduated high school. I did get my GED, but I never finished high school. I actually dropped out after freshman year.

4. I love hockey! Most people who know me from way back know this, but one of my favorite handles and usernames (iamslh) stands for "I am sarah loves hockey") that said, I LOVE hockey. I am an avs fan, and I still remember when they came to denver (from quebec) and won the cup their first year! Nothing can ever replace the likes of patty roy, joey sakic, peter forsberg, claude lemieux, and Sandis Ozolinsh all on one team together.

5. That being said, I named my son Sandis after hockey player Sandis Ozolinsh. The best damn skater on the planet. I used to go to pre-season training at the World Hockey Center in Colorado Springs and I remember just being in AWE over Sandis and his skates. My son isn't the same as that, but hey, I'll give him time. Oh, and did you know that Sandis Ozolinsh's parent's started him out in figure skating, not hockey?

Okay, Those who I tag are (please excuse me for not linking, I don't have the addresses memorized and still getting the hang of AOL)

Anne at Annetics
Lyhreca at Managing the Sweetness Within
Lori at the Very Old, Very Healthy Diabetic
Lala at Lala's Hi Lo Log
and lastly,
(I know you've already been tagged and I know there is no double tagging so just ignore this)
Scott at Scott's Diabetes Journal

Friday, November 03, 2006

The Act of Being Normal

What is normal? How do we define that? Being normal seems to be exactly what you need to achieve in order to make it in our public schools or to be accepted by a loving group of friendly coworkers. Why do so many of us feel out of this normal loop? Why do I personally work so hard to achieve a status of normalcy that really seems to have no true definition?

I’ve been thinking a lot about what is normal lately, and how this affects my family, and most recently how it affects my son. When I think about my son, I think about his passion. I think about his joyful smile. I think about how his behavior generally tests me and shows the truth concerning my patience levels (very low presently) every single morning. I see all of the wonderful things in my son that expand my heart, fill me with pride. Sandis has an energy that overflows. I wish I had that overflowing energy for myself, the energy and the passion to lift myself up with every afternoon. Why is it that when he is at school, they do not see this as the gift it truly is, but rather as a negative in that he cannot focus on what they are doing? What should I focus on? Their negative or my positive? Why does their negative influence my positive? Why can’t he be both? Why isn’t the fact that he is a happy and joyful child enough?

Special Education. (IM NOT NORMAL). Occupational Therapy. (IM NOT NORMAL). Speech Therapy. (IM NOT NORMAL). One-to-One Aide. (IM NOT NORMAL). Psychologist in Class. (IM NOT NORMAL). Rocking Chair. (IM NOT NORMAL).

I may as well just paste a big fat red sign on his head that says “HEY! PICK ON ME!” I remember being in school. I remember the cruelty of young children. I wish I could save him from that. I also want to ensure that he can be the most adult that it is possible for him to be. Do I let him go along, as he is now, with tools that are inadequately suited for meeting the world’s expectations, without much intervention? Or do I step in and offer all that I can, trying to change the little boy that has so touched my heart? (Sandis has both enraged and melted me! He has truly done a number on my heart!)

Why can’t he be normal? Why does everything we do to help him have to make it so clear to EVERYONE ELSE just how normal he ISN’T? Why is this such a struggle for me?

I am still learning to accept my son. I am still learning to work WITH him rather than against him as we try and meet our goals for him. What are his goals for himself? I am still learning to accept my son’s needs. I am still trying to ESTABLISH my son’s needs. I hate that he isn’t breezing through school. I hate that every day at school makes it so much more clear how much extra help he is going to need to get through these next few years.

I hate my OWN limitations. I hate how I myself do not meet their “normal” standards. I hate being the odd family out. I hate feeling like I do not fit in. This is not about diabetes, this is about me, who I am, who my son is, who my family is.

I am trying to pave a way that, although separate from most other families and other kids, has the same goals as other families. We are just getting their differently. Our path has some pretty awesome scenery. We learn a whole heck of a lot on the way. And in the end, even though our goals may be the same (Grow up, be healthy, be happy, find personal success) we will get there so differently, even our results will be different. Our goals will change color and the hues will no longer match.

What is normal? Is there a normal?

I know this for certain, I don’t think we are normal, but maybe we are? If all parents want the best for their child, and all children have different needs…..And I am just doing what needs to be done to meet my child’s unique needs as best as possible…Am I not the most normal parent ever? If all my son really wants is to play, eat, and be loved is he really any different from the child next to him who is not autistic?

Perhaps normal is not something that is defined by someone else? Perhaps normal is not something that is defined by society, but something that is defined more by our instinctual physical and emotional needs more than anything else?

I want to love. I want to be loved. My son wants to love. My Sandis wants to be loved. We share this. I bet you share this attribute with me too.

Let’s celebrate this “normal” trait among us, I’m fairly certain all of us have it!

Wednesday, November 01, 2006


So my endocrinology appointment today (at my doctor's in Saint Cloud) was just basically a big fat mountain of stress. I was eyeing the paperwork that the nurse had before my doctor came in to see me and was SHOCKED by an 8.6 a1c and was brought to tears as I came to terms with the fact that my a1c had jumped from 7.2 (last time's numbers, an increase even there) a full 1.4 points to 8.6. I was more than mildly surprised when my doctor told me that it was actually 6.8! So there was my lesson to not try and read the lab work results sideways and upside down!

On a good note, Gracie's blood sugars today have been wonderfully normal with a 105 fasting and a 119 2 hour PP. I am going to test tonight while she is asleep, as that worked fairly well last night, and that was when she was her highest yesterday after a full day of normal yesterday.

Gracie also had an MRI today, requiring sedation, which also thankfully was normal, although the entire day was fairly hard on the mums, what with IVs in my three year old and plenty of places for her to sleep but recliners although comfy aren't conducive to a midday nap for me (plus I was without sedation!)I do realize that was a mighty runon sentence as well!

I was fully unprepared for this endocrinologist appointment, and was not handling having my kids there very well. Gracie was dopey, and moody, from the earlier day's sedation. Sandis was, as he normally is, unresponsive to social etiquette and the people around him other than to further his rather lively play (meaning get out of my way mom and I want to climb on EVERYTHING and push my sister around and make her scream since she is rather moody!) Normally I can deal with all of this, but I just was super tired and was up to EYEBALLS in every other issue but MY diabetes. I didn't even have sugars, much less my normal presentation of printed out goals and such things. My doctor actually suggested I find a general practitioner (I don't have one) and see about perhaps starting on a mood stabilizer, seeing as how I was obviously stressed and in and out of tears, and taking into account how physical activity with my back and knee is not able to work its mood magic on me. (Run on sentence, I realize this, I am grammatically challenged today, and well, lazy.)

Hmmphh. I did decline the suggestion, as I honestly do feel it is normal to feel fairly overwhelmed and emotional, and I do feel I have not even had a chance to grieve the hopes and dreams and expectations I have had for both of my children nor had the chance to readjust these hopes and dreams and expectations to be more congruent with what I can expect. Dont take this the wrong way. I expect my children to achieve wonderful things and to be wonderful people, but I know that they now have hurdles that I did not know they had previous to these past few weeks. Things will be different than I have always hoped them to be, but perhaps they will be better than I ever could have imagined? We will see.

In my diabetes, I have completely stopped symlin as of today. And I have been handed a tentative diagnosis of gastroparesis. At this point, I'm honestly not too concerned. I have slow digestion at night, but it seems to follow a pattern and I don't get into too much trouble with it, although I had loads of problems with symlin at night, which is partly explained if this diagnosis is actually true. I have to go in to have a test done, but we agreed I could wait four months until my next appointment to set that, as things are a little overwhelming on the family health front right now, and this can just wait.

Gracie's appointment at Children's Hospital is on Monday at 10am. They told me to expect to spend all morning there as we learn a BUNCH of stuff, stock up on prescriptions, and do well, all sorts of stuff that I will tell you about after we do them, because honestly, I don't know what they are. It is touted to take several hours and that is the extent of what I know!

One last note on Sandis's IEP and the social worker from the school. She hasn't managed to call me back. And that REALLY irritates me. But damnit, I think I am probably fairly irritable today.

I also want to thank everyone for their very kind words of support concerning Gracie and Sandis. A lot of times I don't even know how to respond, I'm fairly consumed at this point, but I do want all to know that I really do appreciate it. I find solace reading these kind words after they are in bed and it is good to know that I am not alone in this!