My First Post in 2009

Not one post this year, not one post. So I blog in 2009 quite behind the times.

I will do a quick update and then, perhaps I will tell you all what is on my mind. Because that is what is drawing me to write right now. I don’t have some urgent desire to share point by point the happenings in the past six months, but rather the need to set my heart down on paper. For those of us that write, I’m sure you understand.

February 2009 – Laid off from job as technical writer – shit …..

March 2009 – briefly hospitalized (about a week) for the most gruesome headache in the world. Seriously. Terrible.Freaking.Headache. I could write more about this. Fact is they gave me fentanyl twice, dilaudid twice. And Nubain once. And nothing touched this headache. And these were given to me in a matter of hours. Finally, they gave me morphine, and while I still had the headache and was unable to walk/speak/chew/sit up, etc I was able to lay in a doped up peace not thinking I was going to die while my body is locked in agonizing pain  It was fun stuff! 1 week later I was released, no longer on IV meds, but still with a terrible headache and bruises on my bum from shots I had been given. Good stuff.

April 2009 – Baby Thia Apple Waline was born at 37 weeks 2 days gestation on 4/8/09. She was 10 lbs! 21 inches long and beautiful and healthy and perfect! She got stuck on the way out (but only for a moment, mild shoulder dystocia) but she has no blood sugar problems, she was born full term, and she breathed wonderfully. My beautiful “little” girl!




and yes, we are using cloth diapers :) Here is a cute one!



It was also this month that I was approved for a Trade Adjustment Assistance Training Program so I can complete my bachelors degree in political science. I started school full time (from part time) on May 4th, and I haven’t looked back. Although, school full time with a newborn on your lap is interesting. The program pays for my school 100%, pays 80% of my COBRA until August 2010, and pays me unemployment insurance until February 2011 when I graduate. Seriously, who turns down programs like that? It is too good to be true!

So now it is May. My family of four is now a family of five. And yet, I’ve watched from afar a family of three become a family of one. And that is what is driving me to write…

I live in a complex of 12 townhomes. They are right next door to the train tracks, but separated from them by a big fence and off the road far enough that you just can't see the ins and outs of what goes on here. We are dubbed "affordable housing" which means they charge lower rents so poor people can afford to live in homes (either with section 8 or without) that have enough bedrooms for their children.


I'm in my third year living here. I moved here from my old crummy apartment, and the townhome is beautiful and three bedrooms and two stories and just, wow. I have been blessed. A lot of folks that live around here think it is a shit hole, but I say it is all about perspective.


Anyhow, a girl across the way from me has some mental health concerns. She hasn't been able to work in quite some time, but has been making it. She has guys come and go, some losers, some quite nice. How do I know this? Well, in these townhomes we all face each other, and we get to know the finer details of one another's lives, whether we talk to each other or not. It's just like that. Like Melrose place, but poorer.


A couple of weeks ago this girl's daughter, who is just under or just over a year, drowned in her bath tub. It was fortunate for her that the baby was able to be revived. It was unfortunate for her, that because this woman already has child services involvement, that this incident caused her to lose both her children, and she is currently in a CHIPS trial.


Ick. I've been watching this woman come outside to smoke, and be a shell unto herself. I watch her take out the garbage. I saw her come home without her kids (age 3 and 1.) I watched, and I cried. I watched and I cried and I hurt so badly inside, because it doesn't take much to remember when it was my turn and I screwed up and I lost everything.


I talked to her the other day and I let her know a little bit about my own story, and about how at least over here, no one is judging her and no one is thinking she is bad. I've heard her story about what happened to her daughter, and I don't doubt her truth. I've also been in her shoes. Slightly different circumstances and slightly different time, but I've been there.


Because I am poor (not wealthy) in funds, and because we can afford without help but with some help the things that we need, I live here. I live here and every day I am reminded of yesterday.

I also live across the courtyard from a woman I went to treatment with. And her boyfriend. I was in treatment with him too. (They met in treatment.) She was/is my closest friend here, and I've watched her spiral back into crack for the past year. And tear out our friendship and my trust bit by bit. It happens, and I don't hate her, but I can't trust her. But it reminds me why I'm here, what brought me here, the joys I have that others don't (even though we aren't wealthy or well-to-do we are so loved!)


I've been thinking a lot lately about how I got here and where I've been and I guess the people around me are reminding me. I’ve found that I can find so much more than shame in my past choices. I’ve learned that shame is such a transitory emotion. I’ve learned these things and I realize that it has taken me many years to realize them. And it hurts to watch this young girl across the way and know that I can tell her these things, but it won’t be real until she learns them herself.

And that is a long long road.

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!

Yay!

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.

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.

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: http://www.benotafraid.net/)

177

2 years later I still feel the vicious bite of that number, its recurrence bitingly ironic.

Rarely does the grief associated with my daughter’s diabetes diagnosis reveal itself. Time has dulled the experience.

A change in my peanut’s treatment needs temporarily flares this cyclical grief and I submit to raw feelings with little hope of staunching the spread.

I am not broken

I am not broken
I am whole.

I feel I love I sing I cry.
I am not broken.

I am not in pieces
I am not put together
I am just as I should be.

I am not broken
I am
whole in Gods’ eyes
whole in my husband’s eyes.

I am mother student person whole.
I am not broken
I am whole.




Do you know how it feels to be broken?

Do you know the feeling when others perceive that you are broken; that they feel you cannot accomplish what your body was simply created and put to task to do without their guidance because you are less than whole, less than perfect, lacking, diseased, or broken?

Do you know how it feels to have the label broken?

I am not broken, and perhaps, I am using the form of verse to state this fact, to share its truth, and to broadcast my realization that their truth is not mine. I am not broken.

I am whole.


(edit: The pregnancy is going beautifully. I am 17 weeks and 2 days along. My kidneys are functioning beautifully. My a1c is 7.5. My gastroparesis is HELL. My poor hubby thinks I have the worst breath on earth, but I am doing the best I can. My baby is beautiful and whole and content and deeply comfortable within my warm and fluid depths!

This pregnancy is a journey not just as I embark on the creation of my final child, but also a realization that I am not a statistic, I am not a number, and there are choices that I can make in regards to my body and my care that perhaps others may not understand.

I am not my diabetes, my vascular system, my back disease, my kidneys, nor even my a1c. I am a person that has a person within me.

I am blessed with one of the most arduous yet awesome tasks that God has perhaps ever seen fit to task any woman with. That is to aid in bringing a child into the world. I am working hard, and trusting God; trusting that God does not make broken people.

This entry is intensely personal and painful for me.
I will perhaps never describe to anyone (other than my husband) exactly what this entry is for and to me, but I think you can understand the general gist.)

The New Piece of the Pie

I’ve kind of been going back and forth as to whether or not I should share my latest news, or not, but I guess here goes. I am 12w3d pregnant, and so far so good. Outside of some severe morning sickness (which has now gone on its merry way) I’ve been okay!

For those that don’t know (most do), my pregnancy is high risk. I have type 1 diabetes (for 17 years), gastroparesis (delayed gastric emptying, problems with my vagus nerve in my stomach), hypoglycemic unawareness (I don’t feel my low blood sugars), degenerative disc disease, and spondylosis (arthritis in my spinal canal and subsequent narrowing).

I have two children, ages 8 and 5. I am also newly married, on July 2 of this year. I am 30 years old.

Bob and I decided to try and have children right away, immediately after we got married. He doesn’t have any biological children, although he calls my two his own. Our reasoning to try right away is because I am 30 and have had diabetes for 17 years. It is known (and I was cautioned) by my doctors that if I started to have kidney problems or eye problems, those conditions typically accelerate during pregnancy which would mean that my personal health risk (and the baby’s risk) would be much higher if I had those diabetes complications. I consulted with all my doctors, had my meds changed around, worked on my blood sugars, and got the okay to be pregnant. I had my kidneys and eyes checked and both were great. Since I have been diabetic for so long, I felt like it was only a matter of time before I had kidney or eye complications so I figured the sooner I have this child, the better.

So my husband and I got pregnant, IMMEDIATELY (like the very first week we tried!)

I have bi-weekly appointments with my endocrinologist and at my most recent appointment with my endocrinologist she told me that although before the pregnancy I did not have noticeable issues with my kidneys she now believes I have stage 2 diabetic nephropathy (There are 5 stages, the final being End Stage Renal Disease). As stated before, this condition typically accelerates during pregnancy, so I can expect my kidney situation to worsen throughout the pregnancy. However, after I give birth, my kidneys should return to the health they are at currently, which is easily treatable with medication that cannot be taken during pregnancy because it causes birth defects.

Almost all women with nephropathy develop pre-eclampsia and 90% deliver before 34 weeks gestation. 70% or more of women with diabetic nephropathy deliver via c-section.

I am sad, sad, sad. I just feel like we did all we could to ensure this pregnancy was as healthy as possible. We changed my meds around. I see the doctor constantly. I’m under constant stress health-wise, and although I knew this would be hard, it felt like I could do it. This throws an entire new wrench into the whole pregnancy. Not to mention aside from that I am dealing with the diagnosis of a new life-long eventually life threatening condition. (I know, over-dramatization! My mom has taken meds for her kidneys for over 10 years with no progression, but still!)

The day after I received my diagnosis I went and bought diamond earrings. True to form, I’ve been wearing my diamond earrings and a beautiful diamond heart necklace my mother in law gave me because it just seems the jewels lift my heart and mind. It sounds silly, but the sadness I feel is intense. I am 30. I feel young, not kidney disease material! That may not be rational, but I don’t feel very rational. I feel cheated of health.

I know my chances of returning to almost normal kidney function after I deliver is very high, and I am thankful that as of right now my blood pressure is normal. Knowing these things, however, does not stop up my sadness. I can’t turn back now. However cliché this is, I feel as though I am on a train that has no stops, a direct shot straight to wherever I am going, and wherever that takes me (us) I sincerely hope that the end result is a baby with health enough to survive.