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.


Monday, August 27, 2007

One Big Fat Year Later

Last year I started this site. Last year I thought it might be fun to write about diabetes, running, and food. I felt like sharing my experiences with a disease that has been my companion for roughly 16 years. I wanted to branch out and experience life as something other than a diabetic “on her own.”

I never planned for this blog to journal the diagnosis journey for my son’s autism. I never planned to journal my despair over my young daughter’s diabetes diagnosis only two weeks later.

One cannot predict the turns one’s life will take, independent of my own direction.

One year later I am stronger, smarter, my heart is more full, my legs are more tired, and my thoughts are heavier than I ever imagined they could be. One year and 11,518 visitors later……I am still the same mom with diabetes who struggled through the day in day outs of two pregnancies with type 1 diabetes to usher my babies into this world.

What do I expect for year 2?
1. I expect to finish my Partners in Policymaking leadership training course, and I hope to implement real change in the lives of family’s touched by developmental disability in my community.
2. I expect to continue to fear and be hurt by type 1 diabetes in my young daughter, but I also expect to be empowered by her awesome growth and ability to rise to any challenge she faces.
3. I expect to journey farther in the arena of occupational therapy and special education and I hope to partner with my son’s new school in a way I could not with his school last year.

What do I hope for?
1. I hope to learn how to apply to virtues of patience in all areas of my life, consistently.
2. I hope to apply my listening skills (rather than my speaking skills) in my relations with other families. I want to “hear” their hurdles, so I can have focus when I choose community problems I want to address with my leadership training.
3. Love in all of my affairs. Love and understanding.

Friday, August 24, 2007

Shot Reduction

So Gracie has been needing less insulin. Amazingingly so. Actually, last night she received no shot at all…..and woke up at 97.

A couple of months ago we were preparing to start insulin with meals. Her blood sugars were high consistently and I was a mess preparing for this big change. Then? There was a slow return to normal. A little later they started running low. From 2units, to 1.5units, to 1unit, to .5units, and now to 0 (no shot mom?). I’m not quite sure what my take is on this. I mean, it is fabulous, but does this mean she doesn’t have diabetes (wishful thinking)? How long will it be before we need to start insulin again? I know this occurrence isn’t all that rare for newly diagnosed children with diabetes, but Gracie has been diagnosed around 10 months and has never started short acting insulin.

Should I call her endocrinologist? What do I do? Why am I in a quandary about no shots?

Right now we test around 8 times a day. Gracie will have around 1 high per day (typically 170 – 190) and then normal the rest of the day. She has been having recurring lows throughout the day which is why I have been forced to reduce her insulin over the past month.

So now we wait. We wait for a high. We wait for normal blood sugars. And I can’t help like feeling that when we have to start insulin again, it will feel as overwhelming and depressing and crushing as it did at diagnosis.

….Slowly ever so slowly pulling off the band-aid……

Wednesday, August 22, 2007

Coming Full Circle

Ah! The joys of My Space! Did you know that you can do a first and last name search on My Space and pull up all the members that match that first and last name? You can then methodically pick through the search results until you find that person you are searching for. Seriously. My Space is an incredible people finder. People from high school. People from College. People from whenever.

Have you ever been found on Myspace? I have. I’ve also found others. There was one instance where being found on Myspace was an ick ick ick gross ick moment (ex-boyfriend stupid stupid man thing). But last night I was found and it is the awesomest found myspace thing ever.

You see, a long time ago I had a friend. A friend I had going into highschool and a friend I had leaving high school. I adored this friend above and beyond all and others, and the bond I had with her I have treasured and cherished ever since the realization that friendship could be as powerful and as touching as it was with her. And then. I lost her. We both grew up a little. We both moved around a little. (Me? New York, Kansas City, Minnesota, but who is keeping track?) And she is one heck of a lady to be found, I mean, when choosing between Colorado, New Mexico, and Oregon….I never had any luck. Fortunately, around 12 years later, she found me.

I saw that I had an email on my Myspace this morning. I don’t normally get emails on myspace so I figured I would go ahead and check it real quick. I knew who she was by her picture before I read the email. I knew and tears filled my eyes. I knew and I was sad, grateful, happy, forlorn, exuberant…..all at once.

12 years is a long time. 12 years is a lot to miss. But damn. Sonya I am really happy that my life has turned the corners it has. I am really happy I had those corners. I am very grateful I have had the turns. I am blessed for the tragedies and I am stronger for my mistakes. But again I am grateful for all those turns. Because….Without those turns I would never have come full circle to you, and the friendship we once shared.

So I have been busy these past few weeks. It is that time of year again, you know, the before school time of year. School supplies, open houses for school, IEPs, 504s, preschool, 1st grade, teachers, nurses, school administration, getting acquainted, setting the tone. I’m sure most of you know what I mean. Hectic. Between meetings (How many meetings, EXACTLY, should setting up a 504 take? No resistance is being met by any means, but 3 seems a little excessive! ) and post-op appointments (tonsillectomy), pre-op appointments (microdiskectomy), paperwork (FMLA, short term disability, work-release/accommodations, IEP stuff, 504 stuff, school stuff) I’ve been drop-stop overwhelmed.

Amidst all this busy and my stress-induced tummy turning, I’d forgotten how blessed I am. I had forgotten all those gifts I have been given in my life and how fortunate I am. It is easy to forget, but sometimes all it takes is a small (or huge) reminder to remember all the joys we have been granted.

And Really….If I wasn’t so busy, what on earth would I talk about?

Sunday, August 19, 2007

How to Stop Thumb-Sucking

He sucks his thumb on his right hand

She sucks her thumb on her left hand

Problem Solved.

Kind of....

Wednesday, August 15, 2007

On Friends and Isolation

What to say? It isn’t necessarily something I plan on. It isn’t something I hope for. It just happens to be the result of my state of affairs.

The reasons? Well perhaps they just don’t know what to say. Perhaps they don’t know how to respond? Or perhaps our set of experiences in life just fall too far apart to adequately support friendship and conversation?

Don’t get me wrong. I have a few friends (one or two) and I’m a fairly friendly gal myself. And really, you don’t have to have experience scheduling your own child’s PCA to have the modest appropriation of being “my friend”. But it sure does help.

So……From one PCA scheduling mom to another…..How exactly are we going to get together? When does Joey (random name here) have therapy? Oh….no that won’t work Gracie has therapy on that day. You know, any day after 7pm works fine, I mean, as long as it is during the week and you can come to MY house, oh and it ISN’T Tuesday or Thursday…... Oh…After 7 doesn’t work for you, UNLESS it is a Tuesday or Thursday? I see…….Maybe we’ll just discuss this another time. We’ll think of something…..

I often don’t fit in with single, childless women my age. I just don’t have the time to pursue the same endeavors they do. Add to that my incessant chatter about this child or that, and ya, I doubt they find me very exciting at all. I also often don’t fit in with women my age who have children. I have all those same milestones to talk about, well perhaps in a different order and punctuated with sometimes bizarre events associated with them, but we have a lot in common I’d expect.

Perhaps it is partly me? I don’t want to explain differences ahead of time so I don’t. And then, I have to. Something comes up that I didn’t plan for and didn’t expect and then I have to explain why my child is different from hers. I mean, if we can make it past that point and they aren’t freaked out and our kids still get along (okay, they obligingly hang out in the same room together taking care not to do anything that might indicate interest in one or the other) and we don’t mind drinking our coffee (or tea) in silence it just might work. (This is where wine is helpful….)

I understand the value in a friend. I have discovered the time and energy that is required to maintain one (more than a car, seriously). I treasure what small friendships I have because of this. Because I don’t have to explain to a friend. My schedule doesn’t freak a friend out. Bizarre events? They don’t even phase her.

So what if at times I feel a bit isolated?

Isolation breeds intensity. And intensity is exactly what I have to offer a friend.

Well, that and some really good wine now and again……

Tuesday, August 14, 2007

Making the Cut

I have been chosen to participate in Class 25 for Partners in Policymaking. I am one of forty participants in this years class, and I am honored to be chosen.

My son’s autism diagnosis brought with it a lot of fear. It also brought with it a boatload of paperwork and appointments. And now, almost a year later, I am feeling comfortable with where we are. I am feeling comfortable with the services our family has aligned. I am feeling comfortable and yet I want to move beyond my comfort zone. There are so many families that are touched by developmental disabilities, and I want to help these families.

Partners in Policymaking is the next leg of my journey that began last year on October 19th.

Happiness, Sadness, Accomplishment, and Fear…..These are but some of the emotions I feel. I am happy to be chosen, and I am excited to begin the next leg of my own autism journey.

Friday, August 10, 2007


1. Time
2. Energy
3. Joy
4. Spontaneity
5. Patience
6. Money
7. Space
8. Peace
9. Focus
10. Rest
11. Health
12. My daughter’s health, time, energy, joy, spontaneity, patience, money, space, focus, and rest.

These are the loot of diabetes. I think the last is the hardest to internalize. I realize that despite diabetes’ trickery and thieving ways, I must work with it. I must or I will lose more of the above in more copious amounts. But my daughter. The thought of her joined in teamwork with what most certainly feels like the devil is heartrending. This isn’t a two week thing. This is a


thing. Until death. With you throughout life. All of your life from here on out. And now her. I know it has been some time since her diagnosis. I know this. I know it shouldn’t feel so freakin icky and heartrending and terrible.

But it does.

I will always know what she had BEFORE she had diabetes. I will always know what my dreams were for her before diabetes. Before my dreams for her included 504 plans and syringes and vials and blood and hopes that “God I hope she doesn’t do what I did as a teen.” Different. Terrible. Crushing. Diabetes is crushing.

Diabetes is a thief to the person it shares a body with. A thief you can try to bargain with and work around, yes, but still a thief.

Diabetes is a crushing weight to the parent of a child that has diabetes. Sometimes you feel okay and you can pretend it is not there. But eventually there is that day that you realize you can’t move for all the fear in your heart, and you realize that the feeling of being free of that crushing weight was just an illusion. You are still crushed. Pinned by the crushing weight of your child’s disease.

This post coincided neatly with a neat post by Kerri. Go check it out.

Caught Wondering….

At what point did I cease to be a human? At which juncture did I lose my capability to feel? Is life always going to be this numb? Am I unconscious of any effect my actions or words may have on the emotions of others?

There seems to be a lot of death in my life lately. Gloom and doom. First Sandis’s dad. Of course his dad hasn’t died, but he is awaiting open-heart surgery. And fancy that, he is waiting to have his open heart surgery because he is also waiting for his sister to die. Sandis’s dad’s sister (technically Sandis’s aunt) has terminal cervical cancer. I remember her from many years ago. I remember her. I talked to Sandis’s dad’s Mom (technically Sandis’s grandmother) last night and I heard this most recent tidbit. I wasn’t phased. Really I wasn’t. And I didn’t even realize I wasn’t phased. Not until today.

I was discussing the news of this “aunt” with a co-worker (more like a friend than a co-worker due to her casual demeanor) and she mentioned that I didn’t sound upset. I callously replied, “I don’t know these people.”

(Light bulb moment occurs as I am recognizant of inner-numbness.)

Because. I don’t. I don’t know them. I knew them at some point many years ago and events interspersed with human relation complexity blurred this knowledge. I don’t know them. Does not knowing them mean they cease to be human with feelings and fears that I should respect?

This family has never been involved in Sandis’s life. This family is being torn apart. This family is loosely yet fundamentally tied in with my own.

At the realization of my failure to find empathy and my failure to initially realize I should attempt to respect this family and their current ordeals got me thinking. I am having surgery soon, and normally this would trigger a level 7 (at least) mommy meltdown. Tears, fears, ohmygodtheworldisending meltdown. It hasn’t happened. I, up until earlier today, attributed this to getting older. I mean, damn, I’m almost THIRTY. But is being older a license to lack empathy in any (some, all, etc.) of my affairs?

I’m thinking probably not. I think I have a lot to learn about how to be a human. Thank god I’m not yet thirty. I’d hope I have it figured out by then (at least).


Thursday, August 09, 2007

September 5, 2007

My life is going to change on September 5th of this year. My noble neurosurgeon will be performing a partial laminotomy and microdiskectomy on ME on that date.

How exactly do I feel about undergoing general anesthesia and laying supine (something like that anyhow) while a surgeon I barely know and have had limited conversation with (In fact, I pay him to talk to me….) lays bare my spinal column to correct a terrible mistake of nature (or nurture?)?

Honestly, I am just hoping to heaven that I wake up. The last time I “went under” general anesthesia; as soon as they lifted the mask I bolted upright on the table (to the dismay of all attending) and asked what time it was. It took them quite a few minutes to convince me that I was in an operating room, communicate the time (my one true concern), and then motivate me to lie back down (“You may want to rest a bit sweetie.”).

Words can’t express. Words can’t express at all.

So this time I get to have surgery while on my knees. How interesting is that? And I wonder if I will wake up on my stomach (or my knees?)? Following said surgery, I will not be able to sit, or even bend over, for two whole weeks! (My poor, poor Bob, in more ways than one!)

I guess I am saying that I came to a decision. Actually my doctor came to this decision, and I chose to agree. I have two back doctors. One is a doctor that chose to work only with back patients focusing on intense rehabilitative therapy rather than surgery. The other is a neurosurgeon, a rather conservative surgeon (in my other doctor’s opinion) that operates only on the spine. When my neurosurgeon first recommended surgery, my other doctor was not quite convinced. So what do you do when two doctors disagree? You wait until they agree. Which I did. When my therapy came to the point that my doctor said he felt as though the weakness in my leg was progressing and we could not increase my therapy goals without further injuring my back….He suggested surgery. He then called my surgeon. My surgeon then called me.

So there it is. The reason behind my surgery treason (I know, I know, cheesy…). I managed to put off said surgery for an entire four weeks. Four weeks to prepare. Prepare as in sock away any additional cash I might come upon (guffaw) to help prepare for the September with 2 –4 weeks of income conveniently misplaced (or rather, not earned at all). Fortunately I have a short-term disability insurance plan, so really I will go one full week without pay and then 60% of my normal paycheck until I am back to work full time or back to work 60%.

It gets better though. Sandis and Gracie start school on what day? Oh ya! The day BEFORE my surgery! Splendid! How is that for planning eh? We couldn’t do it any earlier than that though, because Bob is spending the first week with me and he is booked up full through August (those damn hardwood floors!). Bless his heart that he is staying the first week with me. The first week aside, I still have to figure out what to do the second week. I won’t be able to drive for two weeks (hmmph) at least (hmmph) so I need to figure out how to get the kids to school. Will bus company’s change things up? More chaos to add to the first few days of school.

Me to Bus Company: Pick him up here the first day, but pick him up here for the next 5-7 days. Oh and drop him off here the first day, but drop him off here for the same 5 – 7 days that you pick him up here. (head scratching going on here) So what happens if they screw up and drop him off at the wrong here (my house) after I’m already back to work and he is stranded alone at home, but OUTSIDE of the home with no keys (and all my crazy neighbors)?

Add to that, I won’t be able to sit or bend over for two weeks. I’ve got the first week covered concerning chores (god I love you Bob) but what to do for the second week? Is Sandis the new chef of our house? I may actually have that part figured out as I offered to hire my ONE non-crazy neighbor to help me in the afternoons and evenings when the kids are at home with me. We’ll see how that pans out.

So what do you think? Am I traveling light speed towards certain disaster? Or is there a chance this might all work out, and actually improve my current situation?

As an FYI, my back doctor (the one that touts intensive rehabilitation) told me that he feels with the surgery I should be able to try and start running again six months post-surgery. Without, he thinks it would at least be a year, if not longer. Running is not my only motivating factor, at this point I’d like to be able to consistently walk without a limp, but it was a shiny glint in this entire choice.

Tuesday, August 07, 2007


Each day we are faced with a set of choices. Each day the result of our actions in relation to our choices clearly illustrates what is most important to us.

What is important to me?

Let’s take a look at what I did yesterday.

I started the day off by sleeping in. I wasn’t feeling all that great and felt that the extra 2 hours would do me good.

Sleep is important to me.
Being on time to work is not so important to me?

I fed the kids before we set out the door because they were past day care breakfast time.

Meeting my children’s basic physical needs is important to me.
Good nutrition is important to me, as Cheetos for breakfast is an excellent dietary selection.

After dropping the kids off at daycare, I picked up the phone on my way to work to call and say hello to Bob the Babe.

My relationship with Bob is important to me.
My own physical safety is relatively unimportant to me as I was on the cell phone while driving…..

On my lunch hour (make that one-half hour) I drove to Target to buy a pair of headphones. I had forgotten the pair I was bringing from the house that morning and decided I needed a pair I could keep at work because working without Jack White is intolerable.

Music rocks! And it is important to me
I love Jack White, and even though I called Bob (again while driving) on my way to get my headphones, I was bent upon resuming my illicit relationship with Jack White (well mostly with his music, but you get the idea…).

After work I headed to the endocrinologist to get my rather itchy 3-day CGM sensor removed. Obviously I am incapable of removing some tegaderm tape and the sensor myself.

My health and my diabetes care is important to me.
Money is not important to me, as I’m certain I blew ridiculous amounts of it on this 3-day CGM stint.

After spending some quality time at the diabetes center as they “professionally” removed the tegaderm and sensor associated with the 3-day CGM I drove to pick up my daughter from day-care. I then drove us both home where I spent a few minutes putting together a fabulous dinner: Salsbury steak, mashed potatoes, and corn on the cob.

Meeting my family’s physical needs is important to me.
Sodium content means nothing to me in regards to nutritional value as the meal I served (aside from the corn on the cob) was microwaveable and LOADED.WITH.SALT.

The kids and I decided to spend some quality time outside playing after dinner. I actually spent the entire hour outside with them!

Active family time is important to me!
Seeing as how I spent the entire hour gabbing with my pal, active family time is less important to me than gabby friend time!

I believe that it is important to make choices that are consistent with your values. My choices are what teach my children to make their future choices. My choices can be their choices. My choices reflect who I am and what I want in life.

There is also something to be said about a healthy, vibrant perspective.

So there are two resolutions to be made in this regard. The first resolution is that your actions reflect your values, consistently. The second is the choice to find the perspective that highlights the good in your choices, rather than the bad.

Monday, August 06, 2007


This is hilarious......

I'm thinking someone doesn't like the Tilt-A-Whirl all that much....

Sunday, August 05, 2007

It's Been A While...

Since I shared some pictures with you all.

And ya know? There is a reason for that! (All things have their own explanations.....Whether or not the explanation is meaningful...Well....)

My old camera was on the fritz, and then it took a turn for the worse and passed away a few months ago.

My new camera is a gift from Bob the Babe.... As he knows how I have to see what an outfit looks like in a picture before I decide if I truly think it makes me look fat or not (anyone else do this? ).

So, long story short, here's some pics of the family taken with the new, completely awesome, camera pal.

Friday, August 03, 2007


Ya…..I reached this 29 something milestone earlier this week. 29 years of me. Unabridged Sarah.

Next year I’ll be 30. Next month I’ll have had diabetes for 16 years.

On my birthday? I got a card with Jack White on the cover of it. Amazing. I have it hanging on my work computer. I can pretend I am him all day. See that is just the thing, I don’t necessarily find Jack White attractive, I just find “being him” incredibly appealing. So when I am fantasizing about Jack White, I am really not “fantasizing” (ick, oh stop me) I am fantasizing about living my life as the illustrious, genius Jack White. Whatever that entails. Is that creepy? Probably. I can’t say I ever guaranteed that this blog would lack creepiness though……

So, on to other things. I volunteered to help facilitate a “Parents of Children with Autism” support group that is held once a month. I’m still waiting to see if I made it into the Partners in Policymaking program. I feel as though opportunities to help other families have been given to me in such a way as they feel natural to embark upon.

And all I have to thank for that, I guess, is God.

I should also probably thank him for 29 years of life, 16 years of complication-free diabetes, and beautiful healthy endearing challenging children.