Musician Mama

My one true birthday wish...

2010-11-11T00:00:00.005-04:00

My birthday, as luck (or fate, or irony) would have it, falls on World Diabetes Day -- which is celebrated on Nov. 14th, the birthday of Frederick Banting, who along with Charles Best first conceived the idea that led to the discovery of insulin in 1922.

Each year, 15,000 children in the US are diagnosed with Type 1 diabetes. That's about 40 a day.

In December of 2007, at only one year of age, my son became part of that statistic. Since that day, our lives have been markedly different. I have to prick my son's finger or toe to check his blood glucose a minimum of 8 times a day to keep him healthy -- most days it's more like 10 times, and when he's sick, it might be as many as 15 times a day. Furthermore, I must meticulously weigh and measure all of his food so I can keep track of his carbohydrate intake, and titrate his insulin doses accordingly. As he grows bigger and his insulin needs change, I make necessary adjustments to the programming of his insulin pump -- that's right, I do it, not his doctors. They have taught, encouraged, and trained me to think like an endocrinologist, because I am on the front lines of his disease and know it better than anyone else.

Though my professional training lies in music and education, my calling for almost 3 years has been as my son's pancreas. Life has made me a student of this terrible science, and I do it -- and do it gladly -- because I want my son to be able to be a child first: to play, think, learn, and achieve like any other child, without being slowed down by this disease. I want him to live without fear -- fear of the awful physical sensations that come with having high and low BGs; fear of future medical complications like blindness, limb amputation, or neuropathy; fear of being discriminated against by school officials and future employers.

All of this brings me to my one, truest birthday wish: a cure.

Yes, technology has brought us far, and yes, living with Type 1 in 2010 is a totally different ballgame than it was in 1910, when diabetes was, in essence, a death sentence -- but don't let that fool you into thinking that living with Type 1 is "easy". Every day is filled with small, invisible struggles that most of you will never see. As Richard's mom, I work really hard to keep those in the background of our lives -- but they are there.

I'm not holding my breath until the day the cure comes: though there continue to be exciting breakthroughs in the science of Type 1, I think it will still be many years until my son can kiss his insulin pump and blood glucose meter goodbye forever (and I can gleefully crush them both beneath the wheels of my car).

And until that day comes, I'm okay with putting aside birthday wishes for other things -- no, I'll save them for this: that this birthday will be the last birthday I have to "celebrate" World Diabetes Day as well.

31 days and counting...

2010-10-24T22:15:00.004-04:00

31 days.

That's how many days I have accompanied my son to preschool for at least part of the day. At his old preschool, I was there full-time for the first few days, and then there daily at snack time. At his new preschool, I have spent the past week being there the entire day, from 8 am to 2 pm Monday through Thursday, and from 8 am to 10:30 am on Friday. It's like working a full-time job again, except I'm not getting paid. Sound a little unusual? Sure feels that way to me.

On Friday his new teacher called me and requested that I come to school with Richard every day until they we can get an aide into the classroom. Our CPSE meeting for Richard is still 3 weeks away.

I have to say, even though I love my son dearly and I want him to be safe, part of me balked at the request -- isn't this WHY we changed schools? So we could have a nurse on board in the picture? So he would be safer in the classroom? Isn't the idea to help him transition into a classroom WITHOUT his mother?

I suppose I should back up and clarify the picture a bit: Richard actually had his first full day at preschool TWO weeks ago, right after Columbus Day -- and then he got a vomiting bug that nearly landed him in the hospital.

Strike One.

So, we got back in the saddle last week, and managed to go the whole week, for the entire day. Monday and Tuesday at his new school went INCREDIBLY well, diabetes-wise. Perfect, in-range, predictable numbers, aside from a single 70 before lunchtime.

And then diabetes reared its ugly, unpredictable head for Wednesday and Thursday: morning highs in the high 300s that came crashing down to the 40s and 50s with no logical explanation. Both lows happened while he was on the playground. Both times, we nearly missed them -- and yes, this was with me ON the playground the entire time and keeping a pretty close eye on him. It scared the crap out of me, the nurse, AND his teachers.

Strike Two.

I made some changes before we headed to school on Friday, but they only resulted in him staying in the 200s all morning and being EXTREMELY grumpy. Wondering if the crazy BG pattern from Wednesday and Thursday was still manifesting itself, I pointed out his crankiness to his teachers and recommended that he be tested a few extra times on Friday. I could tell his head teacher was frazzled that one of the adults had to be out of the classroom so frequently (at present, Richard has to be walked down to the nurse to be tested). Later that afternoon, I got the call requesting me to stay in the classroom until there's an aide in there to serve as an extra pair of eyes on Richard and an extra pair of legs to walk him to and from the nurse.

Strike Three.

I could SCREAM, I am so frustrated. I am feeling pretty burned out. Every time I feel like we are FINALLY on the right track, the rug gets pulled out from under us. Find a preschool we love? Great -- oops, until they tell us that they can't handle our son's health care needs. Get offered a spot at a district UPK site? Great -- but it's not your home school, so you will assume all transportation needs. Not ideal, but there's a nurse there who's had a kid with T1 before. We'll make it work. Get started at the new school -- whoops, there's one of those pesky vomiting bugs. Lose sleep for 4 or 5 days while you try to keep your kid out of the hospital. Get back to school to get started again -- dang it, your kid's disease has become unpredictable again and the teachers are now afraid of having him in their classroom. Forget about starting to let him fly on his own in school -- you have to be the diabetes helicopter hovering around your son.

When does it end? When? When can my son stop being reduced to just his disease, and start being a whole kid? When do I get to stop crying my eyes out over this out of frustration, and exhaustion? When does the calvary arrive?

For now, the plan is to see if we can get Richard's CPSE meeting moved up further, since the need is urgent. Until then, I will try to be in the classroom as much as possible -- but before that meeting arrives, I have multiple doctor's appointments, etc. set up during school hours that I really need to keep -- FOR MY OWN HEALTH. I have to take care of me, too, otherwise who will take care of my son? And to top it off, I go back to the recording studio this Friday for some sanity-saving WORK (does that sound strange to you?) -- I wonder what they'll think of that. Dad will have to be on call that day.

If you're the praying type, say a few extra for us. I'm really struggling here. If you're not into the God thing, go on and send us positive and healing thoughts, or good vibes/mojo/karma. We're not picky -- at this point I will take whatever I can get.

A letter to my younger self...

2010-10-14T21:50:00.004-04:00

An old friend from high school recently posted a link to a blogger who wrote a letter to her 12-year-old self. It caught my attention -- my life has certainly been different than I pictured it at age. What would I want her to know about herself?

Coming on the heels of finishing "The Time Traveler's Wife" and needing an excuse to stay awake, (since Richard O. is struggling with a vomiting bug and needs his BG tested hourly, more or less,) I think tonight's the night to take on this project. Here goes:

Dear 12-year-old Katie,

You know, as complicated as things are right now in your future almost 20 years from right now, I think that things are harder for you right when and where you are at the moment. Twelve is a strange and terrifying age for a girl, mostly because there is a lot you don't know about yourself yet. Let me share a few things with you, having walked many a mile in your shoes:

I know you worry A LOT about being perfect. About getting the 100 on the test. About being the smartest in your class. About making Mom & Dad proud. About sitting first chair in band and acing your NYSSMA solo. About being popular. About having any weaknesses at all. "If I am perfect," you think, "people will always love me. I will be successful."

Let me let you in on a secret: the quest for perfection is quite possibly the biggest waste of time you'll ever run across -- because "perfect" doesn't exist in real life. Everyone, everyone, EVERYONE makes mistakes, and a mistake doesn't have to stop you in your tracks. A mistake doesn't equal failure. A mistake simply means you have an opportunity to grow, and to learn. Take every opportunity to turn an error into a learning experience -- it takes the fear out of failure. You'll free yourself to soar even higher when you relive yourself of the heavy burden of perfection.

By all means, seek excellence. Work at being the best you can be at a lot of different things -- but don't beat yourself up by comparing yourself to other people, most especially other young women. There will always be someone who is better than you at most things. Don't waste your time on being envious -- rejoice alongside them in their strengths, and learn what you can. Ask lots of questions. Be a cheerleader. And when it's your time to shine, girl, be PROUD of who you are and what you can do -- and trust me, you are going to do a lot of things really well -- maybe not at first, but you will grow into your excellence, sometimes through incredible trials and hard experience. But if there is one thing I know about you, it is that you are a fighter -- you are not afraid to do things that are HARD when you know you must. I love that about you.

Don't be afraid to be real -- with yourself and with others. Show your true colors -- don't feel the need to put up a facade of "everything is fine, I'm fine" when it is not. People will appreciate your honesty and your ability to let them see your weaknesses. Ask for help when you need it. Admit it when you don't know the answer. Ultimately, this will make you more approachable, and will give you a greater capacity for deep and lasting friendship. To me, at age 31, I value this trait incredibly highly. The people I value the most are those who are not afraid to show me their truest selves, warts and all.

That emotional sensitivity that you possess -- the depth with which you feel things -- is a gift. Yes, I know that sometimes it embarrasses you (especially when you find yourself weeping in public. I still hate that, even at my age). It will spur you to reach out to people who need to be loved, and who may feel unlovable. It will lead you to cherish small, hidden moments that pass a lot of people by. It will allow you to express your deep love and appreciation for people. It will allow you to create art, and to help other young people under your direction create it, too. Some of your best moments will be watching your students blossom under your guiding hand. For some, you will change their lives forever - and they will tell you so.

Your journey is yours alone, and let me tell you, it's a beautiful one. You are going to have some remarkable opportunities (singing in Carnegie Hall, living and studying abroad, working with some truly amazing students, becoming a mom to one very special little boy, among other things). Your life will be forever changed by remarkable people. When things get hard (and oh, sister, they will get hard), know that a teacher or mentor will appear in your path -- your job is to recognize that teacher when he or she appears. And, believe it or not, sometimes when things are darkest and loneliest, the inspiration and reassurance to continue will come from deep within YOU instead of from someone else.

You, my dear, are remarkable. You are loved. You are unique. Don't ever stop being You.

Love always,
Katie, Oct. 2010

Beneath the surface...

2010-10-05T03:13:00.003-04:00

In college, one of my professors used to say that good singing is like watching a duck swim -- everything looks smooth above the water, but below the surface the duck's legs are paddling like crazy.

My job, as I see it, is to do as much of the legwork in Richard's diabetes management as possible, so he can have smooth sailing. Thus, tonight while his body is battling some rather baffling and stubborn high blood sugars, I'm up trying to observe, manage, and troubleshoot as best I can. I have yet to figure out what's causing the high (food, pump or infusion set problems, illness, or growth spurt, or just diabetes craziness). If I can get his numbers back under control and he seems to be feeling okay in the morning, he'll get to go on his field trip to the pumpkin farm. If not, then the battle will continue at home tomorrow morning.

But after nights like this, when Richard goes running eagerly to the door of his school and I look like the wreck of the Hesperus at drop-off, I often wonder if anyone even suspects what my night has been like: the hours of sleep that I've gone without so Richard doesn't wake up feeling awful. The mental calculus of figuring out how aggressively to dose insulin to combat a nasty high without causing a crashing low. The fine art of how to poke multiple holes in your kid's fingers and ushering him to the bathroom to pee multiple times without waking him up fully.

And the point of all this? So he can grow like a normal kid. Play like a normal kid. Learn like a normal kid. Laugh and love and dream big and not have to worry about life-threatening complications many years down the road, like other children.

One of the awful ironies of this disease is that if you're dealing with it well, it doesn't look like you're working too hard at all. No one sees the struggle. It's easy to think, "No big deal."

But it IS a big deal -- to me, anyway. A ton of my energy goes into preserving this delicate status quo. It's why I don't always have the energy to make it to that morning church choir rehearsal, or attend a particular social event, or perform much anymore, or heck, even keep up with the housework. And here's the thing: It. Never. Lets. Up. Diabetes doesn't sleep or take a vacation.

So yes, this is a mini pity-party. And yes, it's almost over. And yes, I'll quietly go back to managing things pretty well, the same as I always do. Just know that when you look at my son, you can tell when Mom is paddling hard, because he's sailing smoothly.

A particular kind of heartbreak

2010-09-28T01:10:00.004-04:00

There are some things that life just never prepares you for. Your child being diagnosed with a life-changing disease, for one.

At nearly 3 years after diagnosis, I feel like I have made my peace with the medical side of the disease, for the most part. I am used to checking his blood sugar at least 2x overnight, and my body has learned how to fall back asleep. I am used to counting every single carb that passes his lips by either dragging out the Salter scale at home, using Calorie King, or simply eyeballing it. I am used to the problem-solving process of fine tuning his blood glucose numbers, adjusting his pump settings, and dealing with illness. Of course, I hate that that I have to do ANY of these things, but I have learned, and adjusted, and generally been able to keep my emotions on an even keel.

However, as we have come to grips with sending Richard O. into the care of a preschool for the first time, some new and particularly wrenching challenges have emerged: wading through page after page of legal documents and position papers to discover what is and is not protected under federal law in a daycare/preschool setting for a child with diabetes; learning to train someone else in the arts/sciences of spotting lows and highs in my 3.5 year old, carb counting, and using the pump.

And, hardest of all, learning to deal with that most particular kind of heartbreak: dealing with rejection because your child had the bad luck to have been diagnosed with a really crappy disease, one that requires a lot of skill and knowledge that is difficult to impart.

We learned last week that the preschool we love, that I fought so hard to get Richard into, was "not comfortable" with having the teacher care for Richard's diabetes. I learned this the morning after a board meeting, in the hallway, after being taken aside by the teacher.

"This is mildly upsetting, but ultimately just a minor setback," I thought, and went home to compile a large stack of underlined, highlighted documents about the rights of children with disabilities in preparation for a Friday meeting with the head teacher and co-presidents of the preschool's board. Was I a little shaken? Sure, since I was informed that they didn't even want the teacher to perform blood glucose testing in the classroom -- which put him in immediate danger. I thought to myself, "I just have to come prepared, and I can help straighten this out."

Since Richard was registered at this private preschool as a Universal PreKindergarten (UPK) student, I called our local school district to see what resources, help, and advice might be brought to bear on the situation. They were very nice, and told me that they weren't quite sure what protocol was in a situation like ours, since they hadn't really encountered it before. They promised to get back to me once they knew what they could do to help.

In the meantime, I kept doing what I had been doing every day since the beginning of the year: going each day at snack time to help keep an eye on what Richard was eating at snack, counting the carbs alongside the teacher, and bolusing with the pump. I had indicated to the teacher at the beginning of the year that I would stay in the classroom for snack time each day, and I wouldn't rush to fully withdraw from the classroom setting until everyone was comfortable with the diabetes care. Heck, I know firsthand that there's a HUGE learning curve with the disease -- I didn't want to run the risk of potentially overwhelming everyone, so I thought an incremental approach would work best for both the teacher, and for me as a parent.

Friday came, and while the meeting was largely positive, a few disturbing things emerged from the research I had done: 1) according to the law, either a parent, an adult designated & authorized by the parent, or a nurse actually had to administer the insulin, and 2) even though the teacher had been trained on glucagon rescue by me (and even though she would be protected by the Good Samaritan law if she ever had to use it), training had to come from an RN in order for it to be considered valid. I came away feeling like they wanted Richard to be at the school, but they had to have reassurances that he could be safe there if I was not present. And while the law says that he cannot be discriminated against on the basis of his disease, as a private, parent-run co-op, they simply don't have the human resources to provide the most important "reasonable" accommodation he needs: administration of insulin.

At this point, you're probably thinking, "You're a stay-at-home mom, why not just keep doing what you're doing and going in at snack time every day?" Well, a few reasons. First and foremost, I really feel like Richard would benefit from gaining confidence that other people can care for him and he WILL be okay. Being your child's pancreas from the time he's a 1-year old tends to create some pretty close ties, and part of helping both of us grow is learning to help others help him. Of course, I'm not willing to sacrifice his safety to achieve separation -- I don't think that would be helpful or beneficial at all (and I'd be a basket case, frankly).

Secondly, I'm expecting a second baby in March, and while this has been a healthy pregnancy so far, when it comes time for me to deliver, I WILL NOT be able to keep this up, especially if I wind up needing another C-section. That will put me out of commission for at least 6 weeks, period. Furthermore, during my first pregnancy I wound up on complete bed rest for 8 weeks. I just don't know if that will happen again, but I have to think ahead and plan for the worst, here. And sadly, aside from me, my husband (who works full-time, thank goodness), and my mother (who lives an hour away), there is no one else in my life who is fully trained to take care of my son.

Undeterred, I left the meeting Friday and went back to pursuing things with the school district -- this time beginning to draft a letter to request accommodations under section 504 of the Rehabilitation Act. I spent the weekend drafting and revising, ultimately deciding to request an evaluation for an IEP due to some lingering sensory issues that I think are interfering with Richard's classroom performance. And today, I sent those letters off, via certified mail, and went to school like I normally do.

And then the school district called back today.

The Early Childhood Programs director called and apologized for not getting back to me sooner, but explained that after checking with the State Ed department, the safest and best solution they could offer was placement at one of the school district's UPK sites that had a full-time nurse. They are even willing to let Richard attend for 1/2 days, since I had expressed concern about his ability to get through a 6-hour day of school at age 3 and a half. They even have several placements to choose from, and a shot that a spot *might* open up at our local elementary school. Since NONE of the community-based (read: privately owned/operated) have a full-time nurse, that option is more or less off the table for us -- the district can't provide the resources at the community-based sites. Part of this really sticks in my craw (and frankly, seems discriminatory), but for the most part I really do understand the reasoning.

So, we are left with two choices: stick with the preschool, philosophy, and community we have come to love (and that Richard O. has assimilated into pretty well, in my opinion), but run the risk of sacrificing his health and wellness (and possibly mine/the baby's) in the long run -- OR -- start all over again in a new school with a nurse, with a new classroom, a new teacher, a different routine, and lots of new people to train.

And here is where my frustration kicks in, folks: it kills me, absolutely KILLS me that diabetes is in the driver's seat for this decision. I feel like diabetes is about 5% of who Richard O. is as a person. The other 95% of him would have (is having) a really good experience at his present preschool, I think. I really like the other parents that I have been getting to know there. I love that the parents make the school run with tons of volunteer work. I will really, REALLY miss that if we leave. I will miss feeling so involved with his classroom and knowing what is going on in there so intimately. And at the same time, I can't ignore that 5% -- it could literally determine whether he lives or dies while in someone else's care. If anything serious *did* happen while he was at his present preschool, I don't know that I would ever forgive myself.

And at some level, the "this is not FAIR!!!"-ness of all of this really has me down. As in, I got off the phone with the Director today and cried for over an hour. Loud, ugly, wrenching sobs. I called my mother and cried like a baby while my son slept in the back of the car. And let her drive all the way up here so I could fall apart and try to pull myself back together again. (God bless you, Mommy -- you really are the best!)

I have tried SO HARD to make things work -- I got fingerprinted/background checked/trained as a sub for my son's preschool so I could be in the classroom in the event the head teacher got sick. I spent hours creating a diabetes care guide as an in-class resource for his teachers. I have tried to anticipate all the problems and concerns that the preschool might have about diabetes. Most of all, I have tried to be open and honest about Richard's condition, and what caring for him would require.

And it didn't work. And I tried my hardest. And that is unbelievably disappointing. Heartbreaking, even. Because if it weren't for this damn disease, I wouldn't be up at 3:30 in the morning trying to work all of this out in my head.

I know her...(or, Mother's Day for D Moms)

2010-05-08T16:07:00.004-04:00

Right now, she is sitting in a hospital room, or a doctor's office. Her life has just changed forever -- her child has been diagnosed with Type 1. She is overwhelmed. She is trying hard not to cry in front of her baby. Her mind races -- wondering about the future, about how this disease will change their family, about how her child will bear up under the burden that's been unfairly placed upon his shoulders. When she can get out of the hospital room, out of the sight of her child, she completely falls apart, crumpling onto the floor, awash in despair.

She learns. She takes notes as the nurses and educators draw up the first shot of insulin, and tries hard not to cringe at the sight of the needle. She knows that she must be brave, braver than she's ever had to be. She listens intently to the dietician explaining carbs and how to count them. She asks so many, many questions: "Can he still eat this? How will we know when he's low? When should we call the doctor? Do you think that they'll find a cure in his lifetime?" There is so much to learn, and though she is completely saturated with new and strange information, she fears it all slipping away.

Going home from the hospital is like having a newborn all over again. She doesn't sleep much -- forcing herself awake at odd hours to rise from her bed and test her child, sometimes waking him to give him a shot, or to tenderly place the straw of a juice box between his lips, whispering, "Drink this. You're low." Everything feels so fragile. Life never seemed so tenuous. There are nights she just watches him sleep, wondering which way his numbers are going, wanting to test him hourly but hating hearing him cry each time his tiny toe is pricked.

New books line her shelf: Think Like a Pancreas, Pumping Insulin, Rufus Comes Home. She reads late into the night, studying for a course she cannot afford to fail. For all of her education, her advanced degrees, her life experience, she cannot, for the life of her, make this disease behave in a predictable way. For a woman who has feared failure her entire life, this is terrifying.

Numbers are constantly on her mind, looming in the background as she watches her son play, eat, grow, laugh, cry, and change. Everything, it seems, can be reduced to mathematical units: grams of carbohydrate, milligrams per deciliter, millimoles per liter, units of insulin, ounces of food. She weighs, measures, calculates and recalculates, doses, records, tests, and then agonizes. She dreams about glucose meter readings. Even sleep fails to wipe diabetes from her consciousness.

Slowly, ever so slowly, things evolve. Routines settle in. Patterns emerge from the chaos from time to time. She learns to predict certain trends, and manages to correct them. Days and weeks of trial and error begin to bear fruit. Her boy is happier, growing and developing alongside his peers. There are moments when she is so caught up in the joy of his childhood that diabetes temporarily fades from her mind. She can put the burden down for a few minutes and enjoy parenting -- she knows it will be waiting there for her to pick up again at a moment's notice.

After a time, she begins to find other mothers like her -- hundreds of miles away, but available at the click of the mouse: mothers who are strong. Mothers who educate and advocate, who are warriors for their children when they have to be. Activist mothers. And though it will be months before she ever meets one of these remarkable women in person, she is reassured by their knowledge and their compassion. She considers them dear friends, these fellow D moms.

One day, it occurs to her that these years of trial have wrought a mighty change in her. She is something altogether different and stronger than the woman who crumpled in the hospital. Her daily activity, her raison d'etre, is saving her child's life -- one blood glucose test, one shot, one juice box at a time. She has become a medical expert, social worker, and legal advocate. And though her son has many challenges yet to come, she feels ready to take them on.

Happy Mother's Day to my fellow D moms -- you continue to inspire me!

...because letting go is complicated.

2010-05-02T02:36:00.002-04:00

Letting go.

Parenting seems to be a never-ending exercise in this: leaving your kids with the babysitter for a night out on the town, dropping your son or daughter off at preschool for the first time, watching your teenager drive off in your car, walking your daughter down the aisle at her wedding.

How do you know your kid will be okay?

When you have a child with Type 1, letting go gets even harder. I am powerfully reminded of this every time I have a conversation with someone who offers to watch Richard O. for me. Before I can leave him with anyone -- anyone at all -- I have a mental checklist that I have to go over:

BG testing -- how to do it, when to do it, what numbers are okay, when to call me
Lows -- signs and symptoms, how to treat them, what to use
Glucagon -- what it is, how to use it in an emergency situation
Highs -- signs and symptoms, what to do about them, (and if I really trust you, how to give insulin using the pump), when to test for ketones
Food -- things he can eat without needing insulin ("free" foods), how to count carbs
Pump -- what not to worry about (e.g., tubing peeking out under his clothing), and what to pay attention to (e.g., pump alarms, loose infusion sets, etc), how to give insulin using the pump

The first three things are the barest of bare essentials: without knowing how to do that stuff, I can't leave my son with you. Period. End of story. Knowledge of those three things can literally determine whether my son lives or dies while he's in someone else's care. Type 1 really is that unpredictable.

Can you see why letting go is a little harder for me than for most moms?

Items 4, 5, and 6 on the list are the advanced stuff: if I want to leave him with you for more than 1-2 hours, you've got to have a handle on these things. They take more time to understand and learn, and you need to be comfortable with math and technology to do them. For Pete's sake, if my kid wants to eat a sandwich -- or any kind of a normal, healthy meal -- when I'm not there, you have to know items 4, 5, and 6.

Guess how many people in Richard O's life have been trained on all 6 topics?

3. Me, my husband, and my mom. That's it.

Don't get me wrong, I want there to be more people who can safely take care of Richard O. Heck, I dream about being able to go away for a weekend with my husband, or even have a regular date night. (Fun fact: right now, neither he nor I can remember the last time we went on a date alone together.)

And yet, the twin processes of training more people in this tricky diabetes stuff, of learning to let go -- they are not easy. Finding people who are both capable and willing to take on the challenge has proved very, very difficult. I have scoured childcare websites and resources like Care.com and CWD's Family Support Network: there's just not a lot of folks out there who are knowledgeable about T1, especially in little guys like Richard. And let's face it: I can't just leave him with your average teenage babysitter (although I bet there are some teens out there who could really do this -- just wish I knew where to find them!)

Now imagine trying to find a great preschool situation for Richard O. -- a place where he can learn, play, be a 3 year old, and have someone(s) take care of items 1-6 listed above. Not easy. So far, it looks like I will still have to be in charge of his diabetes care at preschool, if I can even land him a spot somewhere this fall. (More on this challenge in another post -- coming soon).

So, that's my predicament: balancing Richard O's medical needs with his need to go out and explore the world, independent of me. I really don't want to screw this one up.

Because sometimes you need to look back to know how to move forward...

2010-04-18T21:57:00.003-04:00

This week, I had to reorganize the file cabinet. Ho-hum, boring, right? (I know, you're already looking for another link to click. Bear with me for a minute.)

In cleaning out old folders and reshuffling paperwork, I came across all of the documentation and medical files that led up to Richard's admission to St. Joseph's Center for Pediatric Feeding & Swallowing in April of 2008 (follow the saga in order by reading these: 1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11) . I sat, and I read them, and remembered what a very, very dark time that was for us as a family.

Fast forward to lunch yesterday, where I sat, in awe, watching Richard devour a grilled cheese sandwich, vegetarian vegetable soup, peaches, and a glass of milk.

I seriously doubt that most parents ever feel this way watching their kid eat a meal. For the overwhelming majority, I think, you put the food on the table, and the non-picky kids will chow down happily and the picky kids will at least eat something -- but for years, (and I do mean years), we had watched Richard struggle to eat enough to adequately sustain him. Combining that with diabetes made for a heartwrenching, frustrating job as a parent.

Two years after our days in the feeding center, I can take my kid to a church potluck, a friend's house, or McDonald's and he will actually eat. Granted, he might not eat as well as he does at home, but he's eating. And growing. And while we still struggle with getting Richard to embrace trying new and different foods, the persistence is paying off. Roast chicken, ham and cheese sandwich, the aforementioned vegetable soup, asparagus, pierogis -- he's eating them, though he still balks and protests over that first bite.

My thoughts also turned to the amazing network of doctors, therapists, health care providers, friends, and family that shepherded us through that time: our amazing Early Intervention OT, Becca, who worked so hard on Richard's multiple sensory issues; Kathy, the PT who made him custom orthodics for his little feet; Dr. Eicher, who finally diagnosed the GI issues that were making it so hard for Richard to eat, and Dr. Berkowitz, who worked on the behavioral side of things; Maria, the therapist who supported me through the rough waters that I had to sail; my Aunt Dolly & Uncle Lou, who let us move in with them for an entire month during treatment; last but most certainly not least, my mother, who was by my side every step of the way.

Years from now, should Richard O. ever get around to reading that file marked "Early Intervention/Feeding" in the file cabinet, I hope he realizes how hard so very many people worked to help him grow into a happy, healthy boy. I hope that all the struggle he has had to endure in these early years of living help forge a man of outstanding caliber. I hope he knows he has a mother that will fight like a lion on his behalf when he needs an advocate.

And then there are the changes that have been wrought in me. I think if I was able to time travel to go meet Katie Ballantyne circa 2005, the old me would wonder, "Who IS this chick? And how did she get so tough? And wise?" And I would tell her, "Have faith. The storms are coming, and you're going to get utterly soaked, but you'll still be there on the other side. Just keep moving forward."

Spring, activity, and growth spurts...

2010-04-11T20:50:00.005-04:00

Other than illness, nothing really challenges my skill as a pancreas more than growth spurts.

When the body goes through a growth spurt, the endocrine system goes into hyperdrive. Growth hormones surge through the body, the liver kicks out extra sugar to help the effort, and in a normal person, the pancreas is constantly adjusting its output of insulin to regulate blood sugar.

For Richard O (and me, his amateur pancreas), recognizing and capitalizing on growth spurts is a very, very tricky business. When a growth spurt is going on, we tend to get stubborn mystery highs during the night -- numbers in the high 200s and 300s that refuse to come down with normal corrections. Generally, the first time one of these stubborn highs happens, I put in a new infusion set, and we correct and move on. When it happens 2,3,4 days in a row, I know that something else is going on.

The other tip-off (other than the persistent highs) is that suddenly my picky eater wants to eat around the clock -- and he's not so picky anymore. He just wants FOOD, and a lot of it, and he wants it NOW. As in, after eating 3 square meals and 2 hearty snacks, he literally can't fall asleep at night because he's still hungry. The other night he wound up eating a string cheese and half a cup of cashews before he fell asleep, despite the fact that he had already had a HUGE dinner and a bedtime snack.

So, what's the problem, you ask? Isn't it enough that he's eating all that food? Well, his body really can't grow very well if his blood sugar gets high and stays high -- instead of all that extra glucose getting used in the growth process, instead it gets flushed out of the body by the kidneys. All those hard-won calories literally go down the toilet.

You see, Richard O. started life as a 4 lb, 3 oz premature infant -- in the 5th percentile for both height and weight. He's now in about the 50th percentile for height, and just under the 50th for weight. Those gains were hard to come by, and we have worked really hard to help him eat and stay healthy for the past 3 years. Thus, I get a little crazy/obsessed when those persistent highs hit -- I don't want to miss out on the opportunity for him to grow, and I certainly don't want him to start losing weight from burning fat & muscle for energy.

The tricky part, of course, is figuring exactly when and how much to increase his insulin, so we don't wind up with nasty lows. Conventional wisdom in the diabetes world suggests making insulin dosage adjustments in 10% increments to minimize the risk of lows. However, I have found that I have had to increase Richard's dosages as much as 50% during growth spurts to keep him in range. Thus, once I'm fairly sure it's a growth spurt, I get very aggressive with dosing. When his blood sugar is high, he feels awful -- he gets headaches, he can't sleep, he needs to pee all the time, and he literally cannot think clearly.

The marathon

2010-03-29T08:30:00.003-04:00

One of the questions I get most often about Richard O's Type 1 diabetes is, "So is he doing better now? Is he more, you know, stabilized?"

I never quite know how to answer this. I usually respond with something like, "Well, I've gotten better at knowing how to adjust his pump settings, so I can solve problems more quickly, but he doesn't have a functioning pancreas, so I wouldn't say he's stabilized." Richard O. has ME as his pancreas -- while the pump delivers the insulin with incredible precision, I'm the one who figures out what every single setting on that pump should be. Type 1 is an incredibly complex and challenging disease to treat. Just when I think I have things figured out, it throws me a curveball.

Caring for someone with T1 is a lot like running a marathon: it is an endurance race, not a sprint. The problem is, with Type 1 this marathon goes on for the rest of my son's life, or until they find a cure. And it's really more like running a marathon in high heels on a tightrope wire -- everything must be SO precisely balanced for your kid to feel his best. It is a huge responsibility for me as a parent.

But here's the thing about my high-heeled, high-wire act: I know, with absolute certainty, that I am going to mess up from time to time, and I will break a heal, or fall off the tightrope entirely. With Type 1, it is impossible to "get it right" all the time. There are simply too many variables that come into play.

The first year after Richard O's diagnosis, I would really beat myself up every single time he was high or low. Every time we tested, I felt like I was getting a grade on my parenting -- and I had a LOT of failing grades that first year. Extreme highs and lows all over the place, and me feeling like a complete failure. It broke my heart to see my kid feeling so terribly bad. The learning curve with T1 is SO severe. I didn't sleep for weeks, and the pace simply wasn't sustainable.

I wanted to sprint so I could "fix" my kid, but before long I realized that I had to pace my efforts if I wanted to provide the best care for my kid over time. Diabetes burnout is nasty, and just leaves me feeling defeated and guilty. From time to time, I still have to sprint (when he's sick, when his BGs are suddenly all over the place, when a growth spurt is happening). But overall, I think I've found my pace. I've learned not to sweat the occasional wacky number, but rather to fix the number, move on, and pay attention to larger patterns. It's been a hard lesson to learn.

To go back to the original question, "Is he more stable?" -- I suppose the simplest answer is "Yes, he's as stable as a 3-year-old with a mom for a pancreas can be -- mostly okay with intermittent periods of rotten and frustrating variability." But if this is the race our family must run, at least I can have the cutest heels and the funkiest tightrope wire -- 'cause it's gonna be a long marathon.

Blowing the dust off the ol' blog...

2010-03-24T23:59:00.002-04:00

I've barely written on this blog in months, and so whenever I come back to it, I struggle a little. I think blogging is like a lot of other habits one tries to embrace (exercise, prayer, meditation, what have you) -- it's the consistency of doing it frequently that makes it valuable and worthwhile. Thus, I'm swinging my leg over the horse again and trying to get on for another ride.

What have I been up to?

Short answer: a LOT of stuff. Cool stuff. Fun stuff. See "Long answer" below if this doesn't appease your need to know about my life.

Long answer: getting fantastically ambitious in my kitchen endeavors, remodeling our living room, polishing my skills as an external pancreas, teaching Joy School to a bunch of really fantastic 3- and 4-year olds, playing outdoors wtih Richard O., and teaching voice to a wonderful, talented young lady. See "Even longer answer" below if this STILL doesn't cut it.

Even longer answer: I jest, obviously.

Seriously, though, the past few months have been good ones. Our digital camera recently suffered a fatal accident (more on that another time), so I have no new photos to update with at the moment.

I have been doing a lot of deep thinking in the rare moments that I have some quiet solitude - as the mom of a BUSY 3-year-old, those moments are in terribly short supply, and when I do have quiet solitude, I am generally sleeping, not pondering. My deep thinking as of late has focused on happiness, how it comes to us and/or eludes us, and why people in the same situation can come away with such different views of what has happened/is happening.

Life has taught me a few things on the subject. For instance, when I was working at a great, fulfilling, and challenging job before having my son, I was pretty darn miserable. Why? Well, that great, fulfilling, and challenging job took up all of my life, my focus, and my worry. Everything was focused on THE JOB -- doing THE JOB right, trying to measure up to the incredible successes of my mentor and predecessor in THE JOB, etc. etc. I had little patience for imperfection, weakness, or slowness in myself or others. A "bad day" for me back then was when the well-planned rehearsals went down the tubes, or a student wound up sobbing in my office over some audition-related drama, or when despite my best efforts, the tenors kept singing the same phrase out of tune.

Fast forward to 5 years later to the day when I found out my just-barely-one-year-old son had an incurable, chronic disease. That blew my previous "bad days" right the heck out of the water. But a funny thing happened that same day -- I think it was the day my attitude finally shifted in the right direction. Even as I sat up with Richard that first night in the PICU, holding him as they slowly brought his blood pH to a safe level before giving him insulin for the first time, all I could think was, "I'm so happy that we caught this in time."

And suddenly, happiness was a whole different ball game. I go out of my way now to find the good in my days. The first year after Richard's diagnosis was really hard (for a lot of reasons), but even in my darkest moments I found myself spotting little tiny things that lifted my spirits: the birds at the bird feeder, something Richard O. did or said, a Facebook post that made me snort my herbal tea through my nose from laughing. And it was enough.

That's really it, isn't it? The key to finding happiness is realizing that you already have enough and that you ARE enough -- and enjoying it. That doesn't mean you stop striving to become a better person, it just means that you value the journey as much as the end goal. And the journey is a beautiful thing.

Recently heard around the Ballantyne home

2009-12-18T15:12:00.002-04:00

My apologies to those of you who check my Facebook status frequently: you'll see a lot of repeats. Still, I had to write these gems down before they totally faded from my memory.

***********

This morning I caught Richard O. sitting in an empty clementine box with a piece of string in his hands.

Me: "What are you doing?"

Richard O: "Fishing!"

***********

When I went to test Richard's BG late one night, he rolled over and mumbled sleepily, "No, no, Santa Claus! Don't test me!"

***********

Richard O, upon waking up one morning: "Mommy, I'm a child of God!!"

Me: "Yes you are, honey."

Richard O: (Thinks for a minute...) "Mommy, are you a child of God TOO?!?!"

***********

Grandma O, at Richard's birthday party: "Richard, how old are you now?"

Richard O: "Three."

Grandma O: "How old is Mommy?"

Richard O: "Four."

Grandma O: "How old is Daddy?"

Richard O: "Five."

Grandma O: "How old is Grandma?" (meaning herself)

Richard O: "Fifty-four!"

***********

Richard O., as he was falling asleep one night: "Mommy, where are my brothers and sisters?"

Me: "Up in heaven with Heavenly Father."

Richard O: "Oh, then I'll put on my space helmet and fly up to the moon to see them. Will you come with me?"

***********

Richard O, introducing me to the impromptu sock puppet on his hand: "Mommy, this is my sock puppet friend. Sock puppet, this is my best friend, Mommy."

2 years of living with diabetes

2009-12-14T10:20:00.003-04:00

I've been emotional about this since Thanksgiving time, but have been saving my thoughts up to post them today. It's been two years since Richard O. was diagnosed, and it hit me today that we have been fighting this disease for more than half of Richard's life. Not fair, but it is what it is.

I think of how utterly overwhelmed, frightened, and sad I was on that awful day -- wondering if he would live through that first night in the PICU -- and realize just how far we've come.

That was then:

This is now:

The latter is what I see every day -- a happy, healthy boy who is living well with a chronic disease. Does he look like a sick kid to you? Me neither. One of the things that continues to push me on when I get down about life with Type 1 is his sunny attitude. Even when he's miserable with crazy BGs, he can still manage to pull out a smile or a hug or a funny remark. It's still incredibly hard, but it's incredibly good too -- and maybe I seek out and cherish and relish the daily, small tidbits of good than the average mom because I need to cling to them when I struggle.

I still hate this disease, and I especially hate it when it interferes with fun stuff (like when he was completely out of it during last night's Joy School Christmas Party due to plummeting BG). But during this year, we've found our own small ways to fight back: raising money for JDRF through the Walk to Cure Diabetes, participating in the TrialNet Natural History Study, meeting hundreds of other families with Type 1 kids at the CWD Friends for Life Conference, and participating in our friend Leslie's Type 1 education campaign on Facebook. And, of course, the best way we fight back is simply by choosing to be happy in spite of circumstances that are less than ideal. I dream of the day I can retire as a full-time pancreas and return to being a plain old mommy, but until then, I think I'll choose to enjoy this crazy ride. After all, I've got the best kiddo in the world as my co-pilot.

Happy Birthday, Richard O!

2009-11-29T15:58:00.004-04:00

Dear Richard O.,

Can it be that you are really 3 years old? The time has truly, truly flown. The year between 2 and 3 has been one of incredible change and growth -- potty training, learning manners, asking fascinating questions, delving into the thrilling world of pretend play, to name just a few.

Your curiosity about the world around you continues to drive and inspire my own. There is nothing sweeter to me than watching you explore and discover. Keep asking questions -- I love to answer them, whether it's, "Mama, what a sieve is?" or "Where do french fries come from?" or "How does the refrigerator stay cold?" Keep pretending -- I am always happy to be the extra astronaut in your spaceship, the mountain that you're climbing, or the tickle monster that you're running from. Keep loving -- you're old enough now to know that people can be unkind, and that sometimes feelings can get hurt. Sometimes we fail, we make mistakes, but we can always learn from it. We can choose to be kind even when others are not. We can choose to forgive, and to ask forgiveness.

You continue to understand your diabetes more each year. This year we have seen you begin to express interest in taking part in your own care: choosing where to test, learning to put a strip in the meter, even pretending to put in a new infusion site and to "bolus" Mama! As much as I wish you never had to learn these things, I am proud that you understand that they are important. I admire your bravery and cheery disposition even though your diabetes sometimes makes you feel really awful. Son, if I could take that burden off of your shoulders, I would -- in a nanosecond. I promise you we will keep fighting for a cure, but until then, know that I've got your back. I'll be the best pancreas I can be until science finds a way to give you a functioning one again.

You began Joy School this fall, and how you love it! Though I know it's a little tough having to share mommy with your friends during the weeks when Joy School is at our house, you are learning such valuable lessons as a result. May this be the beginning of a lifelong love of learning, and the first of many positive school experiences for you. Don't lose your enthusiasm!

As always, I am so glad that God chose me to be your mommy. From the moment I heard you cry in the delivery room at the hospital, I knew you were mine. I will always love you, and will try to be the best example I can be for you (though mommies sometimes mess up, too). Here's to a wonderful third year, and to the beginning of a fascinating fourth!

Love always,
Mom (aka Mama Bear)

Like a little kid at Christmas...

2009-07-05T23:43:00.003-04:00

That's exactly how I feel right now. Giddy, unable to sleep, restless, but in a good way.

In just over 24 hours, we depart for the Friends for Life Conference in Orlando, Florida. We will be spending 7 days with over 3000 people from across the world who know what it means to deal with diabetes on a daily basis....with other parents who know what it's like to fret over BG numbers, puzzle over carb counts, and deal with needles, meters, and insulin day in and day out. We will be attending conference sessions taught by top medical researchers, diabetes experts, therapists, and others with extensive knowledge and experience. We will get to watch Richard O. play with many other children who are facing the same challenges as he is.

On top of this, we are also taking our first Disney vacation as a family. The conference is held at the Coronado Springs Resort, and we will be staying on-site. I have fond memories of my own family vacations to Disney, as well as numerous school trips there with my high school's music groups. It will be hot, it will be crowded, but I still think that we are in for a good time.

I can't wait to post about our experiences. Watch the blog for updates and pictures soon!

Recently heard around the Ballantyne home...

2009-07-05T00:03:00.006-04:00

Richard O.: "Mommy, tell me a story about....farts!"

Me: "Farts?"

Richard O.: "Yeah, farts!"

***********

Hubby: (pointing to a picture of Michael Jackson on the cover of a magazine) "Richard, is that person a boy or a girl?"

Richard O: "Hmmmm....a.......girl!"

***********

Me: "Time for lunch, Richard! Let's go inside and have some yummy tomato soup, and canteloupe...."

Richard O.: ".....aaaaaand candy?"

Making the cut

2009-06-27T05:40:00.003-04:00

At the end of May, a girlfriend of mine here in Ithaca casually sent me a link on Facebook and said, "I think you should do this." It was a link to Deseret Book's website, specifically a page that announced open call auditions for singing the national anthem at Dodger Stadium. As I looked at the requirements, something in me sparked and said, "Yes, you should do this!"

Somehow, with just 2 weeks before the deadline, I managed to get the application filled out (twice -- Richard O. destroyed the first application I printed), new headshots taken & printed, a recommendation written for me, and two songs recorded with borrowed equipment and burned onto a CD. And all of this transpired in the midst of acting as my son's full-time pancreas, repainting our basement apartment, planning our family's upcoming vacation, getting my hair cut, running about a thousand errands, and helping out a few friends. I dashed off to the post office on a Thursday, popped the package in the mail, and hoped it would arrive by the Monday deadline.

Driving home from the post office, I realized that I was proud of myself just for making the effort to put everything together and get it sent out. I haven't auditioned for anything since 2006, when I landed the role of Phoebe in Yeomen of the Guard (and I found out I was pregnant with Richard just weeks into that production). After all that has transpired in the past two and a half years, just putting myself out there felt like a major achievement. And in a way, it really is a major achievement -- it means I finally feel okay enough with all of Richard O's challenges to try and do something for myself.

Thus, when my name popped up on Deseret Book's website yesterday as one of 250 people to make the first round of cuts, it felt like a bonus. Don't get me wrong, I've been on pins and needles about the whole thing since that audition packet left my hands -- but after nearly three years of doing very little with my musical talents, it was a welcome recognition that I still have a gift; that it hasn't vanished while I have had to attend to other important concerns in my life.

If I've qualified for the semifinals, I'll get a letter in the mail sometime soon -- I'm guessing in the next week or so. Semifinalists have to travel to either Salt Lake City or Los Angeles to sing in front of a panel of judges in July. No details have been given about the dates or times of these in-person auditions thus far, and our July is especially busy this year -- we're going on our first big family vacation to Disney and the Children With Diabetes Friends for Life conference, and then several of Richard's siblings and their families will be visiting us in Ithaca later in the month. Even if I make it to the next round, I'm not sure if circumstances will permit me to go -- but I will worry about that if and when the letter comes. If it's meant to be, I'll find a way to get there.

Richard-isms

2009-06-21T06:50:00.002-04:00

Confession: I have been a lazy, lazy blogger. However, I have been wonderfully busy and have been feeling great! More on what I've been up to in another post....

Richard O. has said so many funny things since my last post, and I've been kicking myself for weeks for not writing them down. So, here we go:

After Richard knocked over a framed picture of the Savior in our home: "Oh no! I breaked Jesus!"

***********

To my mother, after struggling over sharing his toys with a friend: "I'm having a hard day."

***********

After spotting some deer in the yard: "Hello, Mr. Deer! I want to ride on you!"

***********

In my husband's arms, pointing to my razor while I'm in the shower: "That's sharp. Don't touch."

Hubby: "Yes, that's Mommy's razor. She uses it to cut the hairs off of her legs."

Richard O.: "Oh, I think that's a good idea!"

***********

At Home Depot, walking by a big pallet of compost and cow manure: "Mommy, I smell cows! Where are they?"

***********

To me, while I was singing in the car: "Mommy! Stop singing! You're TOO LOUD!"

***********

To my mother, while shining a Mag-lite in her ear: "There you go. Your ear feels all better now. Have a nice day! I will."

Immediately afterward, answering his toy phone: "Doctor Richard."

The Ballad of Daddy Wormy and Other Tales from the Backyard...

2009-05-10T22:17:00.003-04:00

Richard O. has been chock-full of quotable, laughable, lovable moments in the past week. I can hardly keep up with all of them. Here's a smattering:

The Ballad of Daddy Wormy

After 2 years of living in this house and being annoyed at the state of the lawn and landscaping, I've embarked on the first of a series of home improvement projects: repairing the lawn. We have a lot of moss in the lawn, as well as some nasty patches of thatch (where the grass has browned out and pulls up in matted clumps, almost like a rug). Thus, after having made the trip to Agway to talk to the nice people there and pick up necessary supplies, I got down to some serious digging in the yard last Saturday, and managed to tear up and replant the lawn in our side yard. Richard O., my faithful assistant, was out in the yard with me.

It was a damp, cool morning when we got underway, and as the ground was quite wet, I came across quite a few earthworms while digging. I pulled the first one out, and handed him to Richard O., who promptly named him Daddy Wormy and said to him, "Hi, Daddy Wormy! Let's go for a walk." He plopped Daddy Wormy into my green garden cart and took him on a scenic tour of the yard, pointing out the yellow dandelions, my car, and his slide as points of interest. Daddy Wormy even got to go down the slide a few times, as I recall.

After about 45 minutes, it was time to go inside for a blood sugar check and a snack. When I gently suggested that Daddy Wormy should stay outside to eat some dirt, the reply was: "No, Mama, Daddy Wormy wants to come inside and eat waffles." Ooooooookay.

Daddy Wormy had a place of honor on our dining room table -- he was curled up and writhing inside a small ceramic dish next to Richard O's plate while he hoovered down half of a Belgian Waffle, half a cup of canteloupe, and a few ounces of milk (working in the yard is hungry work for a two-year old, I guess!). Afterward, as I cleared the table, Richard O. announced that he was giving Daddy Wormy kisses (um, great?) and that they were going to build tall towers with Legos.

Tickled by the morning's events, I called my parents to tell them about the cuteness of their grandson. I was relating the incident in detail to their voice mail, when out of the corner of my eye I spotted Richard O. about to place a Lego on top of Daddy Wormy. According to my parents, the end of the message sounded something like this: "...and Richard told me that he wanted to play Legos with the worm -- isn't that cute? -- Richard, NO!!!! DON'T SQUISH HIM!!!!" Apparently the machine cut me off just as I finished screaming. Mom & Dad tell me it sounded hilarious.

Suffice to say, after being nearly crushed beneath a Duplo Lego, Daddy Wormy was not wriggling quite so vigorously anymore. Richard O. noted that Daddy Wormy was taking a nap, and all 3 of us went back outside.

Five minutes later, I hear, "Oh, hi, Baby Wormy!" and the cycle began anew....

**********

Geprise!

Mom came up to Ithaca to help out with Richard last week, and I got a chance to dash off to run some errands -- *gasp* -- all by myself, without a toddler in tow. I lingered in the library. I waded through Wegmans at a langorous, pre-child pace. And all this without having to do a BG check, or rummage through my purse for a Kleenex for a runny nose, or chase a certain little someone between the bookshelves, or keep little hands from grabbing toothpaste or chocolate chips or cheese off of the shelves in the store. Strangely delightful and satisfying.

Anyhow, upon returning home, I was pleased to notice some lovely new pansies and a small silvery green perennial planted in the (sadly naked-looking) flower beds next to the front door. I opened the door and immediately, Richard O. came running and yelled, "Geprise!" (Surprise!) then proceeded to tell me all about how he and Gamma (Grandma) dug in the dirt, and put the flowers in the hole, and watered the flowers, and how they would grow bigger, and bigger, and bigger...

I loved the flowers, but I loved his enthusiastic "Geprise!" even more. He really wanted to surprise his mommy with something pretty. Every time we go outside, he points proudly to the flowers and reminds me, "Richard planted the flowers." Thanks to Grandma for making it happen. What a lovely Mother's Day surprise.

The phoenix rises

2009-05-04T15:05:00.003-04:00

Yes, dear readers, I have been away for a while -- a long while -- and you've probably wondered what's been going on in MusicianMama-land.

The short answer to that question is: a lot has been going on here. And unfortunately, it's been a lot of unpleasant, hard, life-changing struggle going on around here. I would not wish the past six weeks of my life on anybody.

Consider yourself warned: the post that follows is emotional, whiny, and perhaps a little self-indulgent. I write this post not as an invitation to a pity party for Katie, but rather as a way for me to get all of the ickiness of the past six weeks out in the open, where I can look at it objectively, deal with it, and move on.

In a nutshell, here's what happened over the past 6 weeks or so:

March 25: Richard O. had a minor illness and stopped eating and drinking. He had ketones, I couldn't keep his blood sugars up above 70, so we had to go to the hospital for rehydration and observation. We lucked out -- he started drinking juice on the way to the hospital, but they still tried to put an IV in 2x and failed. We got things back under control that evening and were able to come home. While we were at the hospital, I started bleeding heavily -- I was 7 weeks pregnant. Called my doctor, and got called in for multiple tests.

March 31: My bleeding had continued since the 25th, on this day I got confirmation from my doctors that I had, indeed, miscarried the pregnancy. I was heartbroken. I really, really wanted this baby. I continued to have miscarriage symptoms for another full week, during which I shed a lot of tears and became frighteningly emotionally numb. A good friend sent me some very helpful books about miscarriage, and though I know I'll be dealing with the emotions of this event for some time, they definitely helped me with my grieving.

April 10th: Richard O. has an accident while I am making dinner for our family: he falls on a plastic rod and tears his soft palate. We rush to the ER and learn he has to have emergency surgery to repair the tear. The surgery goes well, but we are on pins and needles for a week as we wait to see if his eating will return to normal.

April 20th: Richard O. comes down with the flu -- fever, cough, and heavy respiratory symptoms. Thankfully, he had a flu shot, so his symptoms and fevers are quite a bit milder than the norm. His diabetes is surprisingly well-behaved, but he's still listless and not eating well. Essentially, he eats and drinks just well enough to keep his diabetes under control, but he's clearly lost some weight. We begin to worry that perhaps his eating difficulties are beginning to resurface. It has been just about a year since his month-long stay at the Center for Pediatric Feeding and Swallowing.

April 22nd: I come down with the flu, and my symptoms are severe. My fever hovers between 100 and 102 for 4 days before finally subsiding. My body aches, I can't breathe, and I develop a severe cough that rattles my chest. When I do manage to sleep, I am either shivering uncontrollably or drenched in sweat. I feel like I am at a complete loss in terms of caring for Richard O. Mom has to come to my rescue for several days in a row to help me get back on my feet again. It is more than a week before I am feeling somewhat normal.

April 26th: I start breaking out in hives. All over. I wake up at 1 am one morning and have to rush to the medicine cabinet to take Benadryl -- I can actually feel my face swelling up as the seconds tick by. It is frightening, and more than a little grotesque to view. The hives take nearly a week to clear up altogether -- my guess is that it's a simple allergic reaction -- the blooming of all of the trees and shrubs in the neighborhood has precipitated this, but it's not fun. At all.

And so, here I am, over a month later, and feeling like I've just stepped out of the boxing ring of life after getting pummelled pretty hard. I have had some pretty emotionally low points in the past six weeks, so if I have seemed a little "off" to you, this is why. If I have proven flaky, or unreliable, or just plain weird, I'm sorry. I feel like I have been emotionally and physically drained to the point of near-hopelessness. Seriously. I had some mornings where I was waking up and wondering if I should bother getting out of bed, because life was feeling like it was simply too much for me to handle.

Honestly, how many people have THAT much stuff going on in one short period? I may be whiny, but I think most folks would admit that my plate has been over-full in the past six weeks. I think I would have had to be super-human to come out of that unscathed. So yes, I went into survival mode, but I'm still here. And I still don't really feel like my normal happy self just yet, but I have faith that I will again, after things settle down for a few weeks.

I will say this: I am tired of having to be strong. I am tired of having all these "growth experiences" packed so close together. I am ready for God to let me coast a little while and have a few things go smoothly -- let's hope that He has a similar plan in mind.

I'm still here. Barely. But the mighty phoenix arises from ashes, does she not?

Misadventures in motherhood

2009-03-22T20:16:00.004-04:00

Life with a toddler never ceases to surprise me. Just when I think I've got Richard O. pegged, he says or does something that makes me pause, shake my head in surprise and wonder, and rethink my game plan. Here are a few selected anecdotes from the past few weeks.

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We've been making great strides in the potty training arena. We're wearing underwear in public most of the time now, and Richard O. is doing a great job of telling me when he needs to go, even when we're shopping or running errands.

However, as with most things, diabetes can really throw a monkey wrench into potty training, too. The other day Richard O's pump site pulled out just minutes after his lunchtime bolus. I had no immediate way of knowing whether the site was loose or dislodged when I gave him his bolus -- my only option was to put in a new site, then test him in a little while and see if he was high or on target. Thus, we went about running our errands, and after we had done a few, I stopped to check. 430. Arrrrgh.

When blood sugars are high, the body tries to rid itself of the extra glucose by flushing it out of the kidneys. Thus, you have to pee more often, and if you don't drink additional water, you run the risk of becoming dehydrated very fast. I gave Richard a correction and bought him a bottle of water at Target, and we had a successful run to the bathroom shortly afterward. I thought we'd probably make it home before he needed to go again.

We went into the grocery store, and sailed right through until we hit the cash registers. We were completely boxed in -- all our groceries on the conveyor belt, with a person in front of us and several behind us -- when Richard O. gave me "the look" and quietly said, "Mommy, pee in the potty."

To make a long story short, he held out valiantly for as long as he could, but ultimately his little stressed-out bladder had to give. Thankfully, he was riding in one of the fancy child-carrying grocery carts, so he didn't pee all over our food. Still, I could tell he felt badly about it. Poor baby.

We rushed out to the car, where I had an extra change of clothes stashed in his bag. I stripped him out of his soaking bottoms, then turned to clean off the grocery cart seat with a horde of baby wipes and alcohol wipes. He was still thirsty, but when I checked his blood sugar again he was coming down too quickly from his correction, so I handed him some vanilla Pediasure to drink to keep him from crashing.

And then I made my fatal mistake -- I turned my back for an instant while he had an open bottle of beverage in his hand.

I turned around just in time to see Richard O. leaning over his open diabetes/diaper bag with the half-full bottle of Pediasure teetering precariously in his hand. Before I could stop him, he dropped his hand lower, sending the contents of the bottle splashing serenely into the depths of the bag. Everything was soaked. I had to toss several site changes and pump cartridges, a bunch of emergency carbs, as well as a soggy handful of alcohol and IV Prep wipes.

Oops.

Thankfully, everything else in the bag was washable, as was the bag itself. Furthermore, I had pulled his dry clothes OUT of the bag before the spill, and I was able to get him dressed and ready to head back home.

I let out a good belly laugh and hopped in the front seat. Richard O. amused himself by pretending to be a robot on the way home -- he slid an empty cardboard tube on the end of one arm and waved it around like a windshield wiper, all the while chanting "I am a robot." When I asked him what kind of a robot he was, he replied without hesitation, "A wiper robot."

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Most of our more interesting misadventures happen while we're at home. Take, for instance, the cheese incident.

I often sit Richard up on the kitchen counter next to me while I'm cooking. He loves observing, smelling spices and herbs, dumping ingredients into bowls for me, and stirring. I would very much like him to learn to cook as he grows up.

Anyway, I was in the process of beating some eggs for Richard's lunch. He was happily seated next to me on the counter, picking up some cheese slices I had cut in half in preparation for throwing them in with his scrambled eggs. I poured the beaten eggs into the warm pan, turned back to get the cheese, and -- wait -- why is half a slice missing?

I scan my eyes across the counter and floor quickly before realizing that Richard O. is gazing intently into the toaster. I follow his gaze and sure enough, sitting right next to the heating element is that half-piece of cheese.

Thankfully, the toaster is not warm. I finish making Richard's eggs, set Richard on the floor, unplug the toaster, and shake it over the sink.

Nada. No cheese.

I take a knife and try to wiggle it out of place. No luck. Finally I take the bottom off of the toaster, stab the cheese repeatedly with a fork, and pull it out in shreds. Phew. All is right again in my kitchen.

I collect Richard, and set him back on the counter. While I root for a cup in an overhead cupboard, he once again gets back to mischief-making. This time he pulls the waffle maker out of the corner cabinet, opens it, and puts another slice of cheese on it before closing it up. However, I catch him red-handed this time, and as I set him on the floor he races off, cackling like a madman.

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Being a theater-lover and amateur thespian myself, I suppose it was only a matter of time before I witnessed my child try his hand at the dramatic arts. Of course, I didn't quite expect it to play out in my dining room....

We were eating dinner as a family when Richard O. decided that he absolutely HAD to have my Gatorade to drink. Right then and there. And when he first asked, he was quite polite about it.

"Mommy's juice, please."

I wanted him to finish his milk first before taking a sip, and said so.

"Mommy's juice, PLEASE!"

I repeated my earlier offer. Finish the milk first, then you can have a sip.

"Mommy's juice! Mommy's juice!"

And then, his Oscar-worthy moment. He looked at Hubby and I, and let out the most fake-sounding cry ever.

"WAAAAAAAAH!"

We continued eating dinner. He tried a slightly more agonized cry, with a sniffle at the end for good measure. And then another one. And another.

Hubby and I made eye contact, silently agreeing not to cave to his little tantrum. And then, we hear him mutter under his breath...

"It's not working!"

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I have always loved creative play. As a young child, I spent a lot of time imagining fantastic things in worlds of my own making -- perhaps that's why I grew to love theater and acting so much. Still, few things are as marvelous as watching your own child do the same.

Richard appears to have quite the creative inner life, even at age two. Squished pieces of Play-Doh are hungry caterpillars, pinecones in the yard become racecars, and empty seltzer bottles blast off like rockets.

Richard has developed a bit of a thing for the Care Bears recently. Yes, I'm talking about the same Care Bears from the 1980s -- fuzzy, cute, ursines with little tummy symbols. After watching the Care Bear movie with him a few weeks ago, we noticed a new phenomenon -- Richard's very own "Care Bear Stare."

If you're unfamiliar with the Care Bear Stare, it's basically the only "weapon" the Care Bears use against their enemies: their little tummy symbols light up and shoot rainbows and hearts and sunbeams, etc. at the evil/uncaring/unfeeling target, and said target is overwhelmed with caring and happiness.

So, when my two year old runs up to me and shouts, "Care Bear STAAAAARE!" at me while poking his belly in my general direction, does that make me an unfeeling, uncaring Care Bear villain? What, exactly, does my son's use of the Care Bear Stare on me say about my mothering?

Richard's JDRF Walk to Cure Diabetes video

2009-03-17T00:28:00.001-04:00

New video

2009-02-27T07:29:00.003-04:00

The birth of a gamer?

I especially get a kick out of listening to him yell "Die, die, die!" at the screen. Does that make me a bad mommy?

And, more fun with the remote control car:

The return of great numbers...

2009-02-24T12:32:00.004-04:00

So, since I've done so much bad-BG-number-related venting recently, I thought it appropriate to post some AWESOME BG results we've had in the past week.

11:24 am 194 (coming down from breakfast & a correction)

2:24 pm 109 (2.5 hours post-prandial)

3:54 pm 100 (before a small snack)

5:30 pm 124 (before dinner)

8:07 pm 120 (2 hours post-prandial)

That doesn't mean we don't have hiccups (like yesterday's surprise morning 70, followed by a 307 several hours later), but overall, the stability and consistency of his BG is improving. I will be very interested to see what his next A1C test result is. His last one was 7.9, for an average BG level of 177. I expect the next one will be even lower.

So THAT'S what happened to the snakes in Ireland....

2009-02-24T12:08:00.003-04:00

Recent Richard O. gems:

Hubby (while putting Richard O. to bed): And what do cows eat?

Richard O.: (thinks seriously for a moment) Snakes!

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Richard O.: (sitting on the potty) Mommy look! Mommy look!

Me: What is it honey? Did you go in the potty?

Richard O.: (pointing to his successful bowel movement) I made snakes!

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Richard O.: (watching a video of himself when he was still an infant) Oh baby, I love you!