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.


Wednesday, December 24, 2008

A 7.0 Victory! ...among other things

I received in the mail today a letter, a letter from my humble new family practitioner, who with the help of a dietician and a diabetes educator, has agreed to monitor my diabetes through the duration of my pregnancy.

I left my endocrinologist of five years a few weeks past for this doctor, and I am very glad that I did.

Leaving old friends/foes aside, back to the letter. The letter indicated that my a1c is 7.0!


A few of you may be scratching your head, wondering why oh why a pregnant woman with type 1 diabetes should be happy with a 7.0 a1c.

Here is why:

The first month of my pregnancy my a1c shot up from a 7.2 to an 8.6. Since that first month and terrible high, I have been desperately working to lower that a1c. And the lowest I have been able to manage this entire pregnancy is a 7.5. Until now.

I am plagued by gastroparesis, which, in case you didn't know, worsens in pregnancy. The gastroparesis has made easy peasy blood sugars a thing of the past. It was okay when I ate very little (thus the drop from a size 12 to a size 6 before I got pregnant) and was okay with a 7.2 a1c. That changes however when faced with constant nausea and an overwhelming desire to stuff my face. My gastroparesis, combined with my hypoglycemic unawareness, and quite frankly my fear of lows, has greatly limited my success with blood sugars. This 7.0 is a charm. A charm!

I honestly did not believe I would or could reach this a1c during this pregnancy.

My general practitioner who manages my diabetes is going to work with me to help treat my gastroparesis after I deliver. However, I expect things to even out after my pregnancy. As stated before, my gastroparesis is not nearly the issue it is right now when I am able to eat small amounts infrequently, which, if you have gastroparesis and are not pregnant, you know is easy to do. I fill up fast, and if I eat past being full I pay the price in discomfort. It is like symlin, just different :)

On other news,

I am 22 weeks 2 days pregnant! Yay!

There was a quick question about how Bob the Babe and I arrived at Thia Apple's name. I am happy to say that yes, there is a story behind her name!

Thia is a name I have derived from the Greek Name Ilythia, which means Goddess of Labor. Thia, alone, means Divine One or Goddess. But we named her after the Goddess of Labor? And why? Because this pregnancy, from even before I was or knew I was pregnant, has been a labor. A labor in love, perhaps, but a lot of hard work! I wanted our baby girl's name to reflect this love in labor. Bob, however, hated the name Ilythia. Thus the Thia.

As for Apple? Well when Bob the Babe and I agreed on the name Thia, I asked him what her middle name should be. I believe it was the end of a weekday and we were casually lounging in our bed, not ready for bed, just lounging for a few minutes before we were off to whatever we were to do next. And Bob? Bob said Apple. I think he meant it as a joke, but ya know, Apple was just a really cool fit so we stuck with it!

So there you go, the reasons behind the name: Thia Apple Waline

Now, we have also been doing hockey this year. Gracie is in hockey this year, along with Sandis.

Gracie is a junior mite, and you wouldn't believe how her strong legs are taking her about the ice. I love to see her working the thick muscles in her legs. You should remember last year (September 2007?) Gracie was diagnosed with hypotonic cerebral palsy. The diagnosis was met without much ado (we cared, but not really because it changed nothing) but, to know the gross motor delays my daughter has struggled with since birth while I watch her on the ice learning to play hockey, well....She really loves it out there too. She is such a jovial, creative, funky child! She plays more often with boys than girls, and in her own way, despite loving horses and kitties and puppies and the color pink, she is a down and out true to life tom girl. She also really works hard out there! She only used the bar (walker) to help her skate the first four practises. After that, and after some strong encouragement from mom & dad, she abandoned the bar and ever so slowly developed her skating stride. It was so cool to watch! She didn't even participate with the other kids those first few weeks; she just rythmically moved up and down the ice, slow as a snail yet determined as any woman that comes from my lineage is destined to be!

Now on to Sandis. Sandis is in his second year of hockey this year, and he is in the mites. Sandis is a different skater and player this year. He is still an aggressive boy who abandons all protocol on the ice, but he is much more refined this year! We are finishing up a short stint over these past few weeks as a goaltender. Sandis played goal once last year, in full gear, and anounced shortly afterwards that he hated goal and would never play again. I can imagine that for a boy with his perfectionist tendencies, that playing a position that you are bound to have multiple mini failures in just as a par for course is difficult! Well, this year when the coaches asked who was interested in playing goal and practising in goalie gear, my lovely boy raised his voice, and probably his hand.

I wasn't so sure. He'd hated it so much last year! But he was insistent. So we grabbed that extra 20 to 25 pound bag of gear (in addition to his other hockey bag full of gear that we still needed) and we ventured into goaltending adventures.

Sandis has practised in goalie gear three times now, and played one game. He is playing his last game as a goaltender this coming Saturday. In addition to practising on the ice, Sandis has also been coming home and practising blocking "pucks" (harmless plastic balls that damn well better not fly!) in my kitchen. I watched Sandis play his first game as goalie over this past weekend. I honestly think they have traded my boy in for another child. This boy could not be him! I noticed things were off (unusual) in the locker room, where amidst all that young boy chaos as they dressed for their hockey game, my son was unusally calm, focussed, and alert. He cooperated quietly and easily as I worked with his coach to get not only the usual hockey gear (minus shin pads, chest pads, & elbow pads) on but also while we strapped on huge bulky goalie pad to his legs and fastened the monster goalie chest and arm protectors on his thin frame. He cooperated. He helped. He was in tune. He asked questions that were pertinent to what was going on. He was completely with us, in tune with us, communicating with us, and he did all of this while in a chaotic room of noisy boys. Where is my child? Or is this my child and I am just meeting him for the first time?

Sandis purposefully took to the ice with his coach where I watched him carefully listen to instruction. And then I watched my boy, my beautiful boy, pay attention to ONE puck with a focus unabled to be paralleled by even most children his age for forty-five minutes.

My son focussed on one thing, with one intent in mind, with absolutely no outside redirection, for almost an hour.

I realized that day, during that game, that somehow this game of hockey, this game that I have loved for so long and have passed on to my children, somehow this game took my boy and gave me back my son.

Don't get me wrong. I mean, I've always had my son. But for two years now we have had a diagnosis and services and evaluations that have focussed not on the child but on the disability. And I have worked so freaking hard to ensure that my boy has the supports he needs so that things like this are possible for him. But really. That day, Sandis wasn't a child with a helper. He wasn't a child with a disability. My son was a goaltender, playing goal, and doing all he could to not let that puck in. He was just a little boy, and he was my little boy.

And as I've pondered this realization about hockey, how it took this boy from a diagnosis and services rendered and made him back into a little boy, I also realize what it is doing to my little girl. My little girl isn't a girl with diabetes or a girl with braces on her legs out there. She is a little girl playing hockey, and damnit if she doesn't look like any other kid. But she isn't. She's mine.

So what does all this rambling come up to?

Hockey took my children, and turned them back into children. Just kids, having fun, playing hockey, like all the other kids. And I have what I had before I learned they were different, and before I knew what a disability is and what it could mean to me. I have those same kids, minus the limitations that a disability label can put on a child. Minus the limitations. Because what county case manager, while administering Sandis's waiver funds, would stress the importance of a normal activity like hockey? They wouldn't. Only parents do that. Case managers stress therapy, not realizing that the best therapy is not in a doctor's office but rather in the day to day activities that every other family and child is participating in. Those same day to day activities that you lose more and more of the more you add therapies and doctor's appointments. Somethings gotta give. I'm glad we chose hockey.

Friday, December 19, 2008

Thia Apple

Our perfect little beautiful Thia Apple is planning to make her appearance sometime in April. I can’t believe her arrival is so imminent.

Yet in our hearts and in our family, little Thia Apple is already here. She is the newest addition to our family, and we smile and giggle all in wonder of her.

We are anxiously setting up her space in anticipation. Little Thia already has a home and many many hearts that are stolen by her.

Wednesday, December 10, 2008

I have been reading.

It is no wonder, really. I have an ultrasound Tomorrow. You know, the big one. The high clarity, performed by a physician so if there is something wrong he is already in the room to tell you the bad news ultrasound. I guess you can say that they don’t waste any time or resources at the neonate clinic.

I have been reading about families who received adverse diagnoses for their baby while they were still pregnant. They received diagnoses that left a door open for them to abort their child. They received diagnoses that, in the medical professions’ view, lessened that baby’s right to life and lessened the mother’s ability to protect that life and the dignity owed to it.

Many, many of these babies died. Almost all of these babies lived, after birth, for a certain amount of time. Some of these babies were surprises, and did not have the condition their parents were told the baby had.

All of these parents were offered abortions and all of them chose to give their baby life, no matter the length of that life.

I realize this is heavy, tearful reading for an expectant mother who in a matter of hours (albeit at this point around 26 hours) will be having her own diagnostic ultrasound. However, this reading has not left my stomach in a knot. I am not afraid of what we will find tomorrow. I am not anxious for a “loss.”

I have two children, both beautiful, both healthy, who both at some point received a diagnosis which caused me to grieve. I did not want these diagnoses, and I never imagined my life with them.

However, their diagnoses in no way diminishes their role in my life and their place in my heart.

I tell my children that we are having a baby, but they will both always be my babies. No matter their age, no matter their temperament, they will always be my babies, attached to me by a virtual cord that is not even severable by death.
It would be foolish to think, even for a moment, that their position as my babies could ever be diminished or changed by a diagnosis.

It is no different for this child, the child I carry inside of me.

I have routinely refused all genetic testing and profiling thus far in this pregnancy. In fact, while maintaining contact and communication with my endocrinologist, I have really tried to just stay out of the doctor’s office this pregnancy as much as possible. I am enjoying my baby and the time that only the two of us share. I am trusting in the natural progression of pregnancy, and I am not afraid.

So why this ultrasound? Why this ultrasound if I don’t want to know?

We want to know the baby’s sex. We want to know if we are pink or blue and we want to foolishly buy into flagrant baby color schemes! Ultimately, I also plan to spend the majority of my labor at home, alone, with my husband. I will not do this, however, if this ultrasound shows that there are concerns with the baby.

I wait, excited to know which side of the gender fence this baby will land on.

And yet, I don’t wait. Because although I want to know the results of the he/she equation, there isn’t much else I really want to know.

(Edit: If you would like to read the stories I have been reading (I have now read them all!) go here: