Musician Mama

That girl I used to know

2013-03-01T23:38:00.001-04:00

My mother tells a story about me from when I was approximately the same age as Madeline is now. I was playing, and she blithely asked me, "Katie O'Connor, just who ARE you?"

And two-year old Katie piped back, "I am music, Mommy."

Among the many, many things I have been pondering lately is the following: How do you stay connected to your sense of self? Your you-ness, if you will?

A few weeks back I found myself awash in emotion as I reorganized my filing cabinet. I stumbled across letters I have kept from high school and college friends and former students; programs from concerts and performances I've attended and participated in; not to mention a massive file of choral octavos and scores. I popped in some favorite choral recordings, cracked open a few photo albums, and cried for a solid half-hour as I examined these pieces of my life that seem SO far removed from my day-to-day these days.

Look, I know I'm in the trenches of motherhood. And it's not going to be like this forever. And that someday I will miss this (or at least, parts of it. I doubt I will ever miss changing dirty diapers). And I do love my kids, I really do. I enjoy my time with them.

And yet, I would be lying to you if I said I have not experienced a sense of loss since becoming a mom. I went from preparing students for upwards of 25 performances a year to zip, zero, zilch. The number of people I interacted with in a day went from 100+ to around 2. My world got so much smaller so incredibly fast.

In the first year after Richard was born, I think I adjusted pretty well. I felt like my psyche, my persona, my me-ness was intact, more or less. Once diabetes and feeding therapy set in, I had to set pretty much everything else aside to focus on this new reality that was staring me in the face. There simply was no other option. It was 3 years of moment-to-moment, day-to-day, raw survival.

I had a few small side projects here and there: I kept a few voice students on; I took a summer graduate music course at Ithaca College; I managed to fit in some studio singing gigs and a few performances with Janet Galvan's UNYC -- these were brief, but necessary, breaths of fresh air in what had become a very, VERY complicated life. They were a chance to keep in touch with the "I am music" part of myself.

Madeline's arrival brought with it intense joy, but also the challenges of balancing the needs of two kids. Diabetes moved into the background as I settled into routines that worked for us. I had to relinquish some of my late-night BG testing, as I was already struggling to get enough with my newborn. Music, which was already pretty far in the background, became near-invisible. And it became unbearable.

The past year I have been on a journey to find myself again -- the Katie like the one in that picture up above -- and it has led me to reconnect with old friends and mentors; to begin finding my way back into music and (hopefully) into the workforce once again. I updated my resume, began networking once again, and even interviewed for a part-time position as a string instructor at the local alternative school (although it was admittedly a very long shot).

And Wednesday of this past week, I stepped into a music classroom for the first time since 2006 and taught -- I filled in for the music teacher at Richard O's school for the day. And though I had to brush off some mental cobwebs along the way, by the time I was halfway through my 2nd class of the morning, I hit my stride. By the fourth class of the day, I practically had them eating out of my hand. While it was completely exhausting to get up, get lunches and backpacks packed for both me and the children, teach all day, and then come home to parent and make dinner, it was also exhilarating. It was so good to reacquaint myself with Katie the music educator. I am hoping to see a lot more of her in 2013.

What I never knew I could do

2013-02-26T00:15:00.001-04:00

Every now and again life throws me one of those wacky curveballs that leaves me saying, "REALLY, universe? Did that just happen?"

Last Wednesday I got smacked upside the head with one of those experiences -- and it wound up being rather harrowing, but also kind of awesome.

Let me explain.

Last Wednesday, the kids and I were headed down to FL for our annual We-Need-To-Escape-The-Gloom-of-An-Upstate-NY-Winter trip. This year I was making the journey solo, as my husband had only started a new job 6 weeks earlier. Thus, I was especially sure to be prepared with adequate food, books, diabetes supplies, entertainment, and bribes to keep the kids happy and pleasant to be around while being confined in "economy class" airline seats for two flights.

We cleared security in Ithaca with flying colors (Richard O. is a regular pro at it by now, despite the extra screening that we often have to endure because of his insulin pump) -- and spotted Ms. A, a teacher from Richard's school, who happened to be on the same flight. We exchanged some pleasantries, and she even offered to help me out when we got to the Philadelphia airport, since it turned out she was also flying into Ft. Lauderdale.

Upon settling into our seats on our little US Airways Express dual-prop airplane, we noticed it was quite warm. As in, really, REALLY warm. Around 90 degrees or so, actually, and we were totally sweltering as soon as they closed the doors of the airplane. I wound up stripping multiple layers of clothing off of both of the kids. The pilot came on and apologized, and said they were trying to fix the problem. 15 minutes later, we finally got some relief from the oven-like temperatures, but then we had to pause on the runway to have the plane's wings de-iced.

This did not bode well for the tight connection we had in Philly.

We got off the plane in Philly at 8:01, and while it would mean RUNNING to the next gate (in another terminal), we had a prayer of making it to our 8:25 flight with a little luck and some help from the good people of US Airways.

That is, we had a prayer until the cargo doors of the plane got stuck and no one could get their hand-checked luggage (including our stroller, which was a key part of The Plan). We were stuck waiting in the jetway for 10 minutes while the crew struggled with the cargo doors. Madeline did NOT want to stay in my arms in the jetway, and she began wriggling mightily to get down and move around. Finally, I couldn't contain her anymore and HAD to put her down -- but alas, I had no stroller to confine her in, so I had to occasionally dash after her as she went toddling up or down the jetway, while simultaneously dodging passengers who had finally gotten their hand-checked luggage and were now sprinting to try to make it to their next flights. Great fun, I tell you.

At long last, Ms. A got her carry-on, and as she raced past me, told me she was heading for the gate and that she would try to get them to hold the plane for me if she could get there fast enough. I thanked her, and about 2 minutes later got my hands on the stroller and began my own mad dash for the gate.

An agent from US Airways met me as I exited the jetway and stuffed a new set of boarding passes into my hand, informing me that there was no way I'd make the flight, but they'd already rebooked me. As I glanced at the boarding passes, I noticed the date was for TWO DAYS later.

Oh, HELL no, they weren't going to pull that crap on me! We were going to make a run for the gate anyway. Me and my 6-year-old and my 2-year-old.

We jogged to the overflowing line for the shuttle bus and made a beeline for the shorter line -- which turned out to take us to the wrong terminal -- but we still had about 5 minutes to make it to the gate before they closed the doors, so we kept jogging anyway, chanting mantras to keep things positive for Richard O.: "We're having an adventure! We're having an adventure!" and "I think I can! I think I can!" Richard O. was panting wildly (and I was beginning to fear I was going to send him into a nasty low), but we kept struggling on anyway. And somehow, we managed to get ahead of Ms. A, who wound up catching up to us on our way to the gate. At some point we staggered past one of the screens listing departures, and it was, indeed, too late: our flight was listed as departed.

We had been told to go to Special Services to see about our rebooked flight -- I stood in line behind about 5 other disgruntled passengers while Ms. A announced she was going to continue to the gate anyway. I thanked her for her help and turned to take care of Richard, who looked like he was about ready to pass out. His BG was 86, but because I suspected he would be dropping fast from the activity, I handed him some money and had him go buy himself a cold drink at a nearby newsstand.

Here I should mention that while I had packed food for the journey (and some pretty good and nutritious food), the kids had not actually eaten DINNER that night -- I had originally planned on feeding them dinner before we got on the plane, but they both had fallen asleep in the 2 hours leading up to our departure. With both of them getting whiny, we broke out the cheese sticks and granola bars and fruit and made the best of it.

We waited on line for about 30 minutes while the people ahead of me yelled at the lady working at Special Services. I bribed the kids with cartoons on YouTube on my phone (thank you, airport WiFi!!!) in between receiving phone calls from my mom with info about flights to other airports in FL. Then Ms. A came by, telling me to get down to the gate and ask for Rene Burrows, who managed to get her rebooked on the first direct flight out the next morning. I gave up my place in line and started trekking to the gate once again.

We must have looked quite a sight, my children and I -- me, totally disheveled, and covered with stickers and smears of chocolate from granola bars. My children, in various states of undress, also smeared with various food items and drips of spilled beverages. I looked at Rene with all the strength I had left, and said, "Please help me."

And Rene did not disappoint. She got us a voucher for an airport hotel. Though there were no seats left on the first direct flight, she managed to get us seats on an itinerary through Charlotte, North Carolina, first thing in the morning. And I do mean "first thing" -- the flight departed at 5:30 in the morning. We had to be at security right when it opened, at 4:30 am, because our flight started boarding at 4:55...which meant that I had to have the kids ready for the airport shuttle at 4:15 in the morning....which meant that I needed to be up at around 3:30 am in order to make sure we were totally ready to go.

By the time Rene finished making the arrangements and we departed for our hotel, it was 9:45 pm. And we still hadn't really eaten dinner. And I had to get up in less than 6 hours.

Hotel room service ended at 10 pm, so we wound up ordering a pizza. When we went down to pick up the pizza from the lobby, my key failed and I had to wait in the hallway (with ravenous kids and pizza) for their maintenance guy to come upstairs and jimmy the door to get us in. At this point, all I could do was laugh, because really? I get locked out of my room, too?

We devoured pizza for 15 minutes and collapsed into bed in our smelly travel clothes (because our bags were somewhere in baggage purgatory at the airport). I called my husband and my mom to let them know what was happening, then turned out the light and slept HARD for 4 hours.

The next morning we did okay. The kids once again amazed me by being incredibly cooperative and pleasant, despite having so much thrown at them. We got through security. We made it onto our flight. We made the connection without difficulty. And at last, we made it to Florida.

While this is not a travel experience I would ever care to repeat, I experienced a weird sort of elation after all was said and done -- I totally held it together with two young children in tow (one of whom has a chronic medical condition, no less!) in an incredibly stressful situation. I didn't go to pieces. I didn't lose my cool and yell at the airline people or at my children. And my kids (Richard especially) treated it like it was some kind of great adventure. If that is not Mothering Success, what is? I felt like a total rockstar.

Sometimes we don't know we can do hard things until we are asked to do them. If there is anything I've learned from being a diabetes mom for 5 years now, it is that I have an incredible capacity to keep my head together when the stuff hits the fan. I mean, if I can be a decent stand-in for an essential organ day in and day out, what's a few hours spent wrangling kids by myself in an airport in an unfamiliar city? Pfffft. Piece of cake.

Grieving

2013-01-03T10:12:00.000-04:00

20 days since Dad passed away.

I'm still in the disorganization phase of grieving, I think. My brain has not totally accepted that he is gone. When we were at Mom & Dad's house for the funeral and for Christmas, I kept waiting for him to come up the stairs pretending to growl at my kids, or to sit down at the piano and play while we washed the dishes. I expected to find him snoozing in his desk chair or on the basement couch with his Kindle nestled in his lap.

And it didn't happen. And it won't happen anymore, though I so desperately wish it would. And that makes me sad.

I can't count how many funny things my kids have done and said in the past 20 days -- things that Dad would have LOVED to see and hear about. Madeline saying "Ho ho ho!" while doing her Santa Claus impression. Richard O. getting totally excited about tracking Santa on NORAD. Madeline hosting her first tea party on Christmas morning dressed in nothing more than a diaper and a purple fairy tutu. Richard romping in the snow with my brother John. Madeline learning a plethora of new words all at once: "puppy", "green bean", "read", "pie", "tea", "baby", among others. I ache for the things I cannot share with him, both the mundane and the sublime.

I find my grief taking many forms, almost constantly metamorphosing from one to the next. One day it manifests as a mental fog, leaving me unable to form coherent sentences and causing me to miss important appointments; keeping my brain from connecting one thought to another. Another day it comes out in a private concert at the piano as I sing and play the songs we both loved. Another day it is altogether visceral, and I find myself curled tightly in a ball on my bed, wiping tears from my eyes and physically aching.

I find solace in little things that remind me of Dad: reading books on his Kindle (which is now my Kindle), wearing the opal earrings he gave me during my first year of teaching, writing about him.

I appreciate the many expressions of love I've received from friends and family. I try not to take offense when people offer me chirpy platitudes -- but it also reminds me which of my friends really "get" me, and which do not. The people who know and love me best are those who can simply hold a space for me in my grief -- to cry, or be angry, or self-pitying, or numb, or even to laugh and remember. This is not a one-size-fits-all process. There are no clear boundaries, only the horizon of a yet unexplored country. Each day, I take a few more steps, and I feel best when I am authentic about the process, instead of attempting to live up to someone else's expectations of what this should look or sound or feel like.

Other things are taking shape, too -- I have found myself wanting to reshape my living space to reflect more of the things that truly matter to me -- that remind me of who I am, and how I want to LIVE. I am finally printing and hanging the beautiful photos I had taken of me and the children back in April. I dug out a print I've had in a drawer for years and put it in a frame so I could look at it daily. It reads as follows:

Live with intention.

Walk to the edge.

Listen hard. Laugh.

Practice wellness. Play with abandon.

Continue to learn.

Appreciate your firneds.
Choose with no regret.

Do what you love.

Live as if this is all there is.

And this is where I am, at day 20.

Daddy and Boomer

2012-12-14T00:52:00.002-04:00

When I don't know what to do with enormous feelings, I turn to one of two things -- either I sing, or I write. Given that Richard O is sleeping, singing is out for now. And so, here I am. This, believe it or not, is how I am coping.

90 minutes ago, my mother called and asked me to take the phone to a quiet place in the house. Completely puzzled, I told her Richard O was already asleep and Madeline and I were just sitting quietly on the couch and reading books.

"There's no easy way to say this. Daddy is dead."

It was about 5 minutes before it sank in. It's still sinking in.

He was a fantastic father. I have so many memories of him spending time with us, loving us, and just really being present in our lives: playing Peter Pan with me and my brothers at bedtime, flying us around the room (which always made Mom a little crazy, because we would get totally riled up); telling us Little Eddie stories from his childhood around the dinner table; taking me out of school so I could learn how to ski; scaring the living daylights out of me by jumping out of a closet with a gorilla mask on. Daddy crying as I gave my valedictorian's speech at my high school graduation. Daddy taking beautiful photos of the high school musicals I participated in. Daddy taking me out on my first "date" to a Chinese restaurant when I was in first grade, and beaming as I ordered off the menu all by myself.

From birth, he was my cheerleader and champion. I got the nickname "Boomer" from him when I was about an hour old, as he zoomed me around the room saying, "She's my little Boomer!" -- even as my mother vehemently protested. Every Sunday he read me the comics as I laid on his belly on the couch. I remember riding in his white Volkswagen Rabbit (which ran on DIESEL!) every day to preschool at Binghamton University, and listening to Billy Joel's Greatest Hits album both ways. To this day, Billy Joel and Dad are permanently entwined in my memory -- and I still love to sing every song off of that album at top volume, preferably in my car.

Daddy filled my life with music. When I began to sing at a young age, he encouraged every song. After dinner, he would frequently sit down at the piano and play Beatles, Billy Joel, and Elton John tunes, and I would sing. As I got older, I would play flute and my brother Mike would play drums -- we had our own little Partridge family! He was so tickled that we could do that all together.

When it became clear that I wanted to pursue music as a career, Dad made sure I did my homework: he made me talk to professionals, and ask them what their lives and careers had been like. What to expect in terms of salary and job security. And once I was STILL sure that music was what I wanted to do, he was behind me 100%. When I turned down Yale University to attend Ithaca College, he didn't think I was bonkers. I had such great confidence in myself because Dad had instilled such incredible confidence in me.

Dad was both clever and intentional about bonding our family through shared activities: Saturday work parties consisting of cleaning the garage or trimming all of the hedges, followed by a family cookout at a park. Water balloon fights. Saturdays spent skiing at Greek Peak (and eating french fries and sipping hot cocoa by the fire in the ski lodge). Yearly family vacations to beaches: Jones Beach, Montauk, St. John, Myrtle Beach, Bethany Beach. Pilgrimages to Long Island for Christmas and Easter, and the annual O'Gara/O'Connor family reunion at Knoebel's Grove (which, as kids, we liked even better than Christmas!)

He initiated me into the wonderful world of global travel in my high school years, allowing me to come along with him and Mom on a trip to Italy when I was barely 14. He also took me to Spain, and to Italy a second time, and to Ireland and London during my college years. Were it not for those experiences, I can't believe I ever would have felt comfortable spending a summer in London for a college internship, much less a year in Ireland for graduate school. He took my brother John to China and Japan, and traveled with Michael to visit John in Australia when John studied abroad for a semester. Ironically, tomorrow he was to leave on an amazing African safari with my brother, Michael -- a trip that had been on his mind for many, many years. He had a persistent curiosity about people and other cultures that has spread to his children.

If Dad was a fantastic father, he was a peerless grandfather: my children are completely nuts about him, and the feeling was most certainly reciprocated by Dad. Both Richard O. and Madeline call him "Papa", and Madeline especially has her own way of saying his name in an excited whisper. Generally speaking, it's the first word out of her mouth when we drive up to my parents' house.

Just last week, my Dad was sitting companionably with Richard O. at the kitchen table over dinner, regaling him with tales of college pranks he pulled with his frat brothers at SUNY Cortland. He tried to keep his composure as the kids both teased him at the dinner table: Madeline pretending to offer him a strawberry, then yanking it back before he could eat it. When he covered his face to keep from cracking up, Madeline caught on and mimicked him, sending us all into gales of laughter. It was a perfect moment. I am so profoundly grateful that we were able to share it; that he was such a vital part of my children's lives -- that they both knew him well and loved him dearly.

This writing, this brief sketch of a life is so woefully inadequate to describe the man he was -- and is. I suppose part of my purpose in writing this is to record for myself all the wonderful moments that he bestowed upon me. I want to gather them all to me and wrap themselves around me like one of Dad's bear hugs. So much of who I am has come as a result of the love I received from my father. There is no mistaking the mark he left on my life, and the lives of my brothers, my mother, and my children. He mattered.

As I said at the time of my friend David's death this September, I know that everything that is "Dad" is still here somewhere -- only transformed, like a butterfly that has emerged from its chrysalis. And yet, right now, I have no words to convey the depth of feeling I have at his loss. I had counted on him to tarry here with me and my family much longer, rather than grow his wings so soon.

Daddy, dearest Daddy, your Boomer misses you. I'll carry you with me always.

Thoughts on diabetes, 5 years in...

2012-12-12T03:00:00.000-04:00

On Friday, it will be 5 years since Richard was diagnosed with Type 1 diabetes. A "Diaversary", as we call it in the D-mama world.

So, you might have noticed.....I don't talk about diabetes so much these days. You might draw a couple of different conclusions from that:

Things have gotten easier and it's not so tough to deal with anymore.
I'm tired of talking about diabetes.
I've gotten used to it.
I don't want to be thought of as "the crazy diabetes mom" , and I don't want my son to be "the diabetic."

All of these are, to varying degrees, true.

I think it's fair to say that for the first 2-3 years of living with this disease, it more or less occupied my thoughts every. single. moment. How could it not? If you've read my posts during the first few years after diagnosis, you know that I more or less lost my mind during that time. It was a lot to cope with, all at once.

Now that Richard is in first grade, life is a little different. I've gotten accustomed to working with his nurse and his aide on a daily basis. I think of them as junior pancreases (pancreae?) -- our partners in defeating/defying/dealing with diabetes. They do a super job, and they really care about my little guy. I am happy to say that we have grown into a good working relationship with one another. The nurse and I have each other on speed dial. She trusts me to give her the information she needs to keep Richard safe, and I trust her to go along with my suggestions when it comes to bolus adjustment. Sometimes we do great, and sometimes we don't, but it's apparent that we're all on the same team, and for that I am grateful.

The mental math and calculation part of diabetes management has now become automatic for me. I generally do not need pen and paper to calculate carb counts -- I find I can keep a running tab in my mind with relatively little effort. I anticipate that this near-constant firing of my neurons will stave off any sort of degenerative brain disorder (ooh look! A silver lining!) Richard is beginning to grasp mathematical concepts quite well, so I anticipate that we will be involving him more in carb counting before long.

I am still learning the intricate steps of the "letting go" dance: in other words, how to balance Richard's need to develop a healthy sense of independence and separation with the need to maintain his health and safety. I am immensely grateful to the moms who have had the courage and sensitivity to invite him over for playdates -- I can see how that could be enormously intimidating, and yet, we're somehow making it work.

But friends, this disease has a way of wearing you out. I bet the Germans have some awesome compound word for "the fatigue that comes from managing a chronic illness." If I knew it I would use it all the time - and have it printed on a T-shirt.

I confess that I have not been able to keep up with the same rigorous schedule of nighttime testing that I did for the first several years of this disease -- my health was really beginning to suffer as a result of stress and lack of sleep. So these days, I sleep a little more and test a little less, and have mostly made my peace with that. There are still exceptions, of course -- illness, basal testing, and growth spurts still merit all-night marathons -- but most nights, I am satisfied with testing before I go to bed, once overnight, and early in the morning. And on nights when I REALLY need to sleep, I do -- thankfully Richard usually wakes himself up if something is truly out of whack.

The constant mental gymnastics wear you out, too, especially when you're trying to account for the complex interaction of multiple variables affecting blood sugar. This was brought into sharp focus for us this fall when, following a bee sting, Richard's insulin needs almost doubled -- and then they stayed elevated for almost a month following. In retrospect, I think the crazy changes were the bee sting in addition to the onset of a major growth spurt (he suddenly outgrew ALL of his pants and got his first loose tooth). Still, in the heat of the moment, I was driving myself bonkers trying to eliminate causes of those stubborn, high BGs -- was the site bad? The insulin? Did he eat something weird, or was he sneaking treats? Could he have an infection?

Still, I think of where we were 5 years ago:

and where we are now:

and realize that RICHARD AND I ARE TOTAL BADASSES.

We are strong. We are capable. We are knowledgeable, flexible, and prepared. Diabetes is a major part of our lives, but it ain't the whole story. And while I'm sick and tired of diabetes craptasticness, I am so glad that my boy is here, with me, along for this crazy ride.

Holiday Road....

2012-12-06T14:48:00.002-04:00

*This happened over Thanksgiving break, though I am just now getting around to posting it...*

At the outset, it all looked plausible, though sure to be challenging. The prospect of an 11-hour drive in the car with 2 young children, ages 5 and 20 months, is not for the faint of heart, after all. Still, I thought, with adequate preparation, and a recognition that we would HAVE to stop to address the needs of the children from time to time, I thought it would probably be all right.

I packed a variety of snacks. On the side of virtuous eating: mixed nuts, spicy almonds, a bag of apples, a bag of clementines, graham and goldfish crackers, string cheese, water, and milk. On the not-so-virtuous side, some treats: a bag of Cheetos, some leftover halloween candy, and a few other goodies tossed in that were of questionable nutrient value, to say the least.

I packed old-school entertainment bags for each of the kids, including staples like crayons and blank pads of paper, books for each of kids (including Harry Potter for me to read aloud), activity books, small toys, and a stuffed animal for Madeline to snuggle. I downloaded a few books, podcasts, and educational apps to my phone in case we got desperate.

Yes. I was ready.

When my husband sprained his ankle the night before our scheduled departure, some doubt crept in: was this a fool's errand? My husband limped off to Convenient Care to get his foot x-rayed the next morning (because who really wants to spend time in an ER on vacation?), and I buzzed around the house making last-minute preparations and muttering affirmations to myself, like "We are going to be JUST FINE. JUST. FINE." Husband returned from Convenient Care hobbling on a wrapped ankle, with a pair of crutches in case we needed them. I had packed the car, and though we were several hours behind schedule, we departed.

The first 3 hours went just fine -- both kids slept, and when they woke I plied them with some snacks, and read aloud to Richard O. Somewhere there in hours 4 and 5, we hit traffic (one of those fantastic merges to one-lane that you can't ever seem to avoid while travelling through Pennsylvania), and that's when the trouble started.

While our car was stuck on a bridge in the aforementioned parking-lot PA traffic, Richard O. unceremoniously announced that he had to go to the bathroom.

"And it's not just pee, Mom, I have to pooooooooop!"

Uh-oh.

We managed to stall thoughts of bowel movements for about 5 minutes while we assessed the situation -- we were on a bridge, so there was no grassy enbankment to scamper down. Nor was there any sort of cover for him once we left the car. I don't know about you, but I don't think I'd particularly want to have to do my business in front of about 500 holiday motorists.

Oh dear. This was going to get ugly.

We finally hit on a workable, though kind of gross, solution: we took one of Madeline's spare clean diapers, had Richard pull down his pants and turn around, and I "caught" it in the clean diaper, then wrapped it up securely. We opened all the windows in the car.

This is not a maneuver mentioned in any parenting book I've ever read. I was so grossed out I couldn't do much more than shake my head. In the meantime, we looked for an exit.

About 15 minutes later, we managed to get to an exit where we could pull over, dispose of our unfortunate package, and find a place to eat. Relief was in sight!

And then, from the backseat: "Mom, Madeline puuuuuuuked."

"What? Tell me you're kidding."

"Nope, I'm not kidding."

Alas, he was not. Madeline, who had been snacking heartily on peanut butter crackers, string cheese, and apples, must have gotten nauseous in the stop-and-start traffic. I grabbed clean clothes from the trunk and changed her from head to toe while my husband scooped puke out of the seat and tried to clean up as best he could with baby wipes. I handed the kids off to my husband, and continued managing the situation while he went to figure out food.

Over an hour later, we were fed and back on the road. "You know, we could stop somewhere for the night if this gets to be too much," I mentioned to my husband. He shook his head.

The next 4 hours were rougher, with Madeline crying in fits and starts. Checking her diaper at a gas station, I found she had had a blow-out bowel movement that had leaked all over her clothing and her carseat -- thus necessitating a second head-to-toe change of clothing.

Richard O, meanwhile, had needed to pee several times, and I noticed his blood sugar was staying on the higher side (which is not unusual with car travel, since he's less active than normal -- plus, we had had fast food for dinner). Despite multiple correction doses of insulin and a hefty temp basal, his blood sugar wasn't budging. We stopped yet again for an infusion set change.

After the stop to change Richard's site, Madeline was beside herself -- she was ready to be OUT of the car and snuggled up with Mommy for the night. And yet, we pressed on. I managed to calm her by singing songs for the next hour or so and turning around to offer my hand for her to hold. However, my nerves were starting to fray. Once she finally fell asleep, I felt sure that the rest of the journey would go smoothly.

And it did -- until we saw the lights of a police cruiser flash in the rearview mirror shortly after entering Virginia around 10:30 pm.

Oddly, at this point I started to laugh. "Really? Now this?"

"Mom, are we going to get a ticket?"
"Richard, just stay quiet and don't say anything."

The policeman came and tapped on my window and asked my husband to drive up to a safer spot a quarter-mile ahead.

"Sir, you were traveling 58 in 45 mile per hour speed zone. Are you aware of that?"

My husband indicated he was not.

"Where are you headed?"

"North Carolina."

"Have you been driving all day?"

"Yes."

He headed back to his patrol car, and my husband sighed and glanced at me. "I really don't want a speeding ticket."

The policeman returned, and we must have just looked exhausted and pitiful, because he actually let us off the hook. "Don't speed for the next 40 miles or you are sure to get caught. Be careful, and have a happy Thanksgiving."

"Happy Thanksgiving!" crowed Richard O. from the backseat.

At this point, my husband relinquished the steering wheel, and I took over for the last leg of the journey. Words can't express the relief I felt finally pulling into my sister-in-law's driveway at 12:30 am.

It was over. Talk about thanksgiving!

Remembering David, Part 1

2012-09-17T13:49:00.000-04:00

My friend Dave passed away last week.

Dave, probably the single most colorful character I knew at Ithaca College, had a penchant for spreading mischief. He was handsome, funny, charming, and one hell of a smooth talker. And he could get away with just about anything.

He would make ships out of cafeteria trays, plates, utensils, salt shakers, and napkins, and set them afloat in the fountains of the Terrace Dining Hall. He casually interrogated his best friend Andrew's anti-Semitic roommate with questions like, "Do you like to read books? Like Mein Kampf?" He gave everyone (including me) unfortunate nicknames that were somehow hilariously funny. He LOVED saying things that made me blush (I was way more naive than your average college freshman).

For all his irreverent antics, he had a deep, warm, thoughtful and loving side as well. He was THE best person to have a one-on-one, late-night chat with. He questioned nearly everything I believed in, and while we frequently had vastly different opinions, there was always a sense of mutual respect and love between us. I knew I could always count on him to give me his real thoughts on any problem.

He went away for a Semester at Sea program, and came back deeply affected. He bribed a guard so he and his friends could sleep overnight on top of the Great Wall of China. He ventured out into a turbulent protest in the streets of a foreign country after his program leaders expressly instructed him to avoid it. He climbed to Buddhist temples in remote places and had conversations with monks and street children.

After graduation, we said goodbye and pursued our own paths for a while. He came to my wedding; a few years later, I went to his. Time passed.

We stumbled across one another years later on Facebook, right around the time my son was diagnosed with Type 1. I learned that he had been diagnosed with (and beaten!) cancer in his early 20s, not long after we had graduated.

And then, about 4 years ago, the cancer came back. In his lungs.

Dave didn't say or post much about his health struggles. He only confided to me what had been going on after I had posted about my ample frustrations with Type 1, and its impact on my life. Over the summer, I felt a pressing need to see him and hug him and talk to him in person. And so, during a trip to Long Island with family in July, I managed to break away for a few hours and drove to his house for a visit.

By all outward appearances, he was in rough shape. But as we sat on his couch, hanging out with his cat Petey, and began to talk, the years and the illness melted away and it was another late-night chat with my friend Dave. There was laughter, probing questions, tears, philosophizing, and remembering. I walked away knowing that it would likely be the last time I would see him alive, and felt profoundly grateful for the time we had spent together.

Upon returning home, I took a chance and contacted our small group of friends to let them know that Dave was gravely ill, and to recommend that they contact him soon, either with a visit, a phone call, or a card. I kept a close watch on his FB page, exchanged posts and messages with him, and generally tried to keep encouraging and loving him.

Then, last week, as I casually scrolled through my FB feed after feeding my family dinner, I saw his sister's post: Dave had passed away.

Through tears, I combed through photo albums in search of pictures of my friend. I put REM's "Automatic for the People" (which was a cornerstone of my college soundtrack, especially when hanging out with Dave) on repeat on the computer and dug through my file of beloved, saved letters until I came across this one, written from Dave to me on the night of my junior recital some 13 years ago:

Dearest Katie,

Today is the day of your junior recital, and Im very excited to hear the singer you've become in all of your glory. At the risk of sounding like a father, I want to tell you that I am immensely proud of you. While your voice has improved, I'm extremely proud of the young woman you've become. I've never been more sure that God is with someone than I have been that He is with you. He is with you because people are drawn to you and seek the Light that you have found again and again.

I don't have to tell you that life isn't easy, but I want to remind you that His Grace will always find those that live in His name, as you do. The circumstances of life try us continually, but as long as we do our best to remain on the path of a True Human Being, we have nothing to fear, for we are not alone. Life happens to us all, Katie, but YOU have happened to LIFE, and that is why I and so many love you.

To be at your recital tonight is a celebration of life and overcoming its obstacles. You are strong and beautiful, and your gift to us all tonight is all the difference between darkness and light. You inspire me continually, and I'm very honored to receive your gift.

I love you,

David

THIS is the kind of guy my friend David was -- and is. Those last two paragraphs do a better job describing Dave than they do describing me. The goodness, love, and friendship he spread in the world trumped everything else he had to endure: cancer, a divorce, and the long slow decline of his body. His heart never lost its incredible dignity, love, and grace. It never hardened and became angry and bitter, despite the incredible unfairness of facing death right in the prime of his life. THAT is the example I wish to emulate.

I have much more to say about Dave, but this is a fitting place to stop for now. Rest, dear friend. I miss you so.

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.

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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!"

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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!"

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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?!?!"

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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!"

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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?"

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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!"

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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!"

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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!"

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

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

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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!"

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

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

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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."