Tuesday, February 12, 2013

No crying over spilled tomatoes

I usually try to keep any discussion, particularly on social media, about living with T1 Diabetes to a minimum. But today was one of those reality filled days, so I'm breaking my own rule.

Today marked yet another stress and worry filled day in a series of many. No sleep. My bed beeped, buzzed and vibrated with the nonstop alerts from Ellie and Bradley's pumps. Zero sleep. I quit trying at 4am. Hello caffeine.

Ellie's Dad misplaced her testing kit. I spent hours. Hours. Looking for it before school. Never found it. It is personalized to her pump and CGM, so this is a problem.

Missed the bus. Drove the kids to school, even though I had an early appt. Not great timing.

As I was trying to get ready, the phone rang 3 three times. Both kids were low. Bradley dangerously low. I waited, in a towel, for him to call me back 15 mins after his low, to test again. I waited in this towel for 45 mins. Worried I was going to miss my dentist appt. In the meantime, Kate was invited for a playdate by my dear friend Claire, so I was pleased and trying to get there on time.

The worries of the toll these low bloods, and also high bloods, take on our babies' bodies often take second place to the daily stress of dealing with them. Mostly because the worry and the sadness could sink me. I have just gotten good at keeping on keeping on.

Then my dentist cancelled my appt. After I'd arrived.

Bradley had another bad low. Terrible for his little, hard-working heart. I was sad. I was crying. I wore my sunglasses all day. Because under them were swollen, tear stained eyes. I could not control the flow of tears; that happens when I am this tired.

Gary asked me to go to Walmart. Ugh. My least favourite of every retailer known to man. I go there rarely. I'm not elitist; I just prefer RC Superstore and Costco for big box store needs. Walmart treats the bulk of their staff poorly.

Checking out. Short line which took forever. Someone ahead had card trouble. She was cranky at the man working the till. A manager was called. A young girl. She was openly annoyed and seemed condescending towards the cashier. When it was my turn to cash out, the gentleman checking me out was instantly recognizable. Although I rarely come here, this distinguished looking gentleman, of at least 60 years (and who, in his home country is undoubtably a professional) is always working the line I end up in. He said, "Hello Miss, do you want your milk in a bag?"

Shortly after this as he was scanning the produce, what seemed to be a million grape tomatoes went flying everywhere... On the floor, over the counter, some even jumping. I looked at the gentleman. He was panicked.

I put my hand on his, hoisted up my sunglasses, looked him in the eye with a smile and said, "Hey, no problem. It's just a few tomatoes."

Less than a second later, the manager was over. She said, "I'm sorry." She rolled her eyes. "Did he spill your tomatoes?"

"Oh God no,", I said. "I did that. I've been off all day. I'm sorry. I'm happy to pay for those tomatoes. It was my fault."

The 25 yr old manager said, "Oh no, you don't have to pay for those. No problem. Do you want to go get more?"

No, I said, I've got loads. She smiled and left.

The gentleman working the till reached for my hand and squeezed it and and said, "Thank you so much Miss for taking the blame. You may have just saved my work life here. Probably I think yes you did."

And I can't get that out of my head. His gratitude for such a small, insignificant thing brought on a whole new fresh batch of tears. I wished him a nice rest of the day and a Happy Valentine's Day and left.

Of all the life or death issues that keep me awake at night... thinking that taking or not taking the blame for spilled tomatoes in a Walmart lineup could cost a refined gentleman his job reinforces the notion that no matter what we're doing, if we do it with a smile and a kind intention, we can make someone else's life better.

To quote a hero, the Dalai Lama, "Be kind whenever possible. It is always possible."

Do not cry over spilled tomatoes. xx

Monday, January 2, 2012

Love is the Heart of the World

So, a few things to set up this story. When I shop alone (which is not often) I wear my earbuds and listen either to music or sirius on my iPhone. Anti-social? Yes. A-hole-ish? I hope not. I enjoy it and I take them out whenever I encounter anyone, which also is not often. Usually only at the till - this is a big city. I set the earbuds up so that they go under my jacket and are not that noticeable. I leave them in while driving, but obviously don't listen to them while driving. I turn off whatever I am listening to. I'm not an idiot.

Another set up to the story... I find this time of the year incredibly sad. I didn't always. 4 years ago today, I was experiencing early labour, which I had off and on for months while pregnant with Kate. Who had a twin. Obviously, her twin didn't survive. That, while very sad for us, is not terribly uncommon. I was just hoping to make it to the morning when I had my first c-section scheduled at 37 weeks. My mother was storm stayed at the Halifax airport and we stayed up all night keeping our fingers crossed she'd get here before Kate did. She made it, with 3 hours to spare. She and Gary had zero sleep; I had about 2 hours. It was a nail-biting affair, as was the entire pregnancy.

But we were excited. I knew this was our last baby and I soaked everything in. We just needed to get this last precious baby out, safe and sound, and then life could go on.

She was born, healthy and incredibly beautiful, on January 3rd at 3pm. We both had some complications, and ended up in the hospital for 5 days. I missed Ellie and Bradley so badly I could taste their sweet smell.

Kate's birth was a thrilling time and she was so loved and wanted; for years before her arrival! Her birthday should be a happy time for me, but unfortunately it coincided with a gut-wrenching event: Ellie's diagnosis with Autoimmune Juvenile T1 Diabetes. I won't go on about it, but hands down it was the worst time of our lives. Bradley was diagnosed 6 months later. 2008 was not an easy year. No matter where I am or how great a mood I am in, I cannot talk about that period of time without crying. Ironically, I wasn't terribly weepy at the time; just overwhelmed. I had a lovely baby girl who I credit with keeping me sane during that year. Her and her rock star father and siblings, that is. The courage Ellie and Bradley had then, and continue to have now cannot be overstated.

So fast forward 4 years. We have great Christmases together, but somewhere between Boxing Day and NYE, I get the SADS. I think it's the feeling of how much hope we had about the future in the days leading up to Kate's birth, and the life changing difficulties that soon blindsided us, with the T1 diagnoses. We also feel socially isolated, which is normal for parents of special needs children. Feeling forgotten is worse than feeling disliked. I understand people not liking me, of course! But our kids...? They are sweet, kind and brave. And in no way am I biased. :-)

So, now every year despite my best efforts I drift back to those emotions of hope, worry, jubilation and then heartbreak that marked the first week of January, 2008.

But THIS year is exciting. Because Miss KateyPie is having her first BIG GIRL party with friends... a My Little Pony Princess Party. Fun...!

Today I went out to get the party supplies. I was wearing my ear buds. Listening to Lady Antebellum. I love them. Don't judge me. A few of their songs on their latest album are some of my lifetime favourites. They make me cry sometimes. Occasionally, when I am alone and want to get the SADS out, I listen, cry, purge, move on with it. That's what I was doing today while shopping. So, as I drove into Toys R Us, I had my ear buds in, but not on. Like I said - not an idiot. But as I got out of the van, an angry lady, about 60 years old came up to me and yelled, "HOW DARE YOU DRIVE WITH THOSE THINGS IN YOUR EAR... YOU'RE LUCKY YOU DIDN'T KILL SOMEBODY."

She didn't know that I was already well into crying. So, when she saw the tears coming from under my sunglasses, she scoffed, "WELL YOU DON'T HAVE TO CRY ABOUT IT. BUT PEOPLE LIKE YOU PISS ME OFF."

In a feistier mood, I might have explained to her that they are easier to leave in my ears and simply turn off the iPhone in my pocket, but I couldn't be bothered. I was deep in my own sadness and trying to get rid of it before heading home to prepare for Kate's party. I did find her a bit mean and presumptuous, but whatevs.

I went into Toys R Us (the Rapunzel dress I was seeking was, of course, sold out), so I left and went to the Superstore.

Walking into the grocery store, earbuds in and on, I got stuck in a bit of a crowd. They were moving incredibly slow. It annoyed me. Then I looked up and noticed who was ahead of me and likely the cause of this slow moving crowd? Nasty lady from the ToysRus parking lot! I said nothing, but sidestepped the crowd and passed them by. I did look back at her, only to see that holding onto her arm was a clearly disabled man, the same age as her, struggling to move. I am guessing that he was her husband and is crippled as a result of some disease. Maybe even an autoimmune disease.

It brought tears to my eyes. She was not nice to me, but I'm guessing she was taking out a frustration on me that had nothing to do with me. Everyone is fighting a battle; not all are equal; some are harder than others and everyone has their way of dealing with it. Most of the time I deal with our issues well, but not always. Let me be clear... most of the world has it harder than we have it day to day and I wake up grateful for my family and my life everyday. But in our small Calgary suburban world, not many people live with the daily fears and responsibilities that we do. Fear that their children might not wake up; thus you get up every 2 hours to check their blood to make sure they are okay. The exhaustion is relentless. The only relief you get comes at the expense of your spouse. People who know the exhaustion of a newborn think they know what it's like. But they don't. I know the exhaustion of a newborn, three times over, and it was a cakewalk by comparison.

So, Lady Antebellum played on in my ears, while I reflected on the challenges this lady must have, caring for the disabled soul she was with. Then I noticed a really beautiful pregnant lady, with a long, thick (enviable) ponytail. She was pushing an adorable little girl, about 2 years old, with glasses on. Her glasses were cute and made me smile. Her parents were very young and attractive and her Dad was nuzzling her and laughing with her. As I got closer, I noticed she had Down Syndrome. She was delightful. So loving; so happy and her parents clearly smitten with her. I thought again, you never know... you just never know by looking at one individual what their life is like; their joy, their sorrow, their worries, their hopes...

They ended up in the line beside me and I couldn't look away. I'm sure they have worries about the future, but in this normal-life snapshot in time, shopping in a ridiculously crowded store, they were happy and loving. The song, Love is the Heart of the World played on in my ears, I smiled, I cried and I decided to write about it. I felt like a character at the end of a film; coming to vast realizations too complicated for a novice like me to put to paper.

I made a few promises to myself. Chief among them to let go of some of the inconsequential things that I let bother me. You would think that after learning to live with very real, very grave day to day concerns, that I would no longer obsess over smaller things: slights real or imagined, my tight pants, the state of our home, what people think of me... it is all okay. I am married to my best friend. He always has my back and has suffered exhaustion lately to help me get out of the hole of longterm sleep deprivation and all that that entails. He is the best person I know - well, he, my Dad and my father-in-law are in a category all their own. Good men. I have loving parents and siblings who I know wish they could do more for us. We all wish we lived closer. I miss my hometown more with each month I age. I envy all my old friends who have moved back home and settled there. And we have freaking great kids. The word amazing is so overused these days, but that's what they are. They all really are. Amazing.

So, now that I've done a bit of an emotional purge, Katey and I are out to kick off her Birthday Eve by going to the nearby salon to get her hair washed. Yes, that is a thing we do, once/week. Don't judge me... you would do it too if you were in charge of washing her hair in the tub. :-)

Love your kids, thank your parents, hug your spouse and be kind to strangers. Because you just never know.

Tuesday, November 23, 2010

Parenthood: Our Version

"If you bungle raising your children, I don't think whatever else you do matters very much." Jacqueline Kennedy Onassis

"Parenthood, particularly parenting children with serious, chronic health needs is the perfect job for someone who has not yet had a nervous breakdown, but has always wanted one." Me, 2010

It is no secret that our two oldest children fight Type 1 Autoimmune Diabetes everyday. Ellie was diagnosed in January, 2008, the same week that her baby sister Katey was born. Later that year, we received the heartbreaking news that Bradley's immune system had already attacked his pancreas, and that diabetes was imminent for him, too. Since that time, and often under the haze of sleep deprivation, my attitude about how we'd handle it has gone through many incarnations. At first, we just tried to learn as much as we could, master the equipment, and keep the kids upbeat and happy. After that, I "decided" that diabetes would not be the planet our world would revolve around. We had a great life before diabetes, full of fun, friends and laughter, and I would not let that change. I would also not talk about it, post things on Facebook about it, or let it have a negative impact on all the wonderful parts of our lives. Three years later, I realize how impossible that was. I tried not talking about it. Shrugging questions off with, "Everyone has a battle, this one's ours, we are lucky in every other possible way, including how sweet and kind our kids are..." blah blah blah. That's what I did for the first year.

After the rough first few months, both kids were doing well. They accepted their bi-hourly blood checks, needles and food restrictions and scheduling. Kate was still just a little nursing baby when Ellie started Grade 1. Being in school for full days provided many challenges, and most days, I had to drive to the school 1-2-even 3 times/day. Kate never had the chance to finish a nap in her crib for the first 18 months of her life. I'm pretty sure she's still bitter about that.

The first year wasn't easy, but the kids remained happy, well-adjusted and healthy-ish.

The first hint that maybe I wasn't doing emotionally as well occurred at a work Christmas party of Gary's. I've always loved all types of parties - I even dig the fake, small talk! Gary and I have always been considered pretty fun people, if I do say so myself...(insert Sarah Palin you-betcha wink here). A few work friends I hadn't seen all year asked about how the kids were doing. Right there, in the posh and trendy surroundings of a downtown Calgary "IT-SPOT" I started to cry. At a party. I could not stop. Truthfully, it was my first night out in over a year, I was dressed up, happy to be out and and had a lovely glass of champagne that the wait staff refreshed. I didn't drink a lot... I didn't have to. Something triggered my tears - probably a combination of champagne, exhaustion, and deep, deep sadness over what this disease had done to our kids' lives. (In addition, I had just recently realized that Type 1 Diabetes had been the disease that killed Julia Roberts' character in Steel Magnolias).

The raw emotion and tears that hit me that night lasted about 2-3 days. I cried to Gary about what diabetes had done not only to our kids' bodies and their little lives, but also what had happened to our lives as a family. We rarely saw people anymore. I became very isolated. When your kids have chronic conditions, you don't feel comfortable talking to people about it, because you feel guilty saying anything that could be construed as a complaint. It's not complaining; just stating the facts about the new realities. In addition to that, some people become uncomfortable around you. Not because you are talking about the disease (I didn't) but because when they look at you and see an otherwise healthy-living, loving, happy, engaged and educated family who have had their lives ravaged pretty randomly by a wayward immune system... it makes them fearful. Fearful that the same thing could happen to them.

You know how awful you feel when you hear someone has cancer? And then you find out it's lung cancer and that they smoked for 35 years... there's almost a feeling of relief, like, "ohhh... dear... that's terrible. But they DID smoke. 'I' don't smoke..."

It's ugly, but true. The opposite is also true. When disease hits (especially young people) and it was no one's fault, not preventable and nothing that could have been done to change things, it makes some people uncomfortable.

After the crying episode, I briefly saw a therapist. The JD Clinic at the Children's Hospital had recommended therapy for us as soon as we'd received the first diagnosis with Ellie, but there was truly no time. Plus, there was no one to watch the kids so that we could get there. Children with chronic conditions, and also their parents, are more prone to depression because of the relentless nature of the disease and it's round-the-clock care. No matter how great you do with levels or a crisis one day, you start from scratch the next. Parents are more prone to divorce and a myriad of other issues. You live with full throttle anxiety and worry, and a great deal more responsibilities than parents of healthy children. Can you imagine testing your kids blood before giving them even a little Christmas mandarin orange, all day, everyday? Then measuring millimetres into a syringe and giving them needles every time they eat a meal, then worrying it might be too much insulin and that they might pass out, or worse? Not to mention the grander worries about their longterm longevity. You are literally in charge of making sure that the people you love most in the world, live. It can make for raw nerves, so therapy is wise.

I think therapy is the greatest gift you can give yourself. I have yet to meet a person without some issue. It is not something to turn to in times of crisis, but long before that. Tantamount to taking a car you care for in for regular oil-changing/check-ups. I haven't been in 18 months, and I could probably use an hour, but I'm writing this instead.

We realized this school year, that with the best of intentions, we have not done right by the kids in downplaying their conditions to the world. Especially at school. I won't get into it all, but a few incidents at school have really changed our perspective. Then, on Nov 4, Ellie had a grand mal seizure while getting ready for school. Afterwards, she passed out and vomited for several hours. I called 911 right away and she was rushed to the ACH. She remembers none of it, thankfully, but it was the worst experience of my life. I thought we might be losing her. I feel sick just writing about it. We are pretty sure it was the result of a series of severe low blood sugar she was having at night. We've made some changes and now test her and Bradley several times through the night.

Ellie is doing well, and does not like talking about/hearing about "the incident". Since it happened, and maybe because Gary was working out of the country at the time, I feel scared to be the only adult in the house. I also feel overwhelmed sometimes and afraid often. Gary has been away much of the fall. I've also become more open about diabetes on Facebook, and emails. When parents call and ask if our kids can come over for a playdate after school, instead of making up an excuse, I tell the truth. They can't.

It's hard, if not impossible, to find an original thing to say about parenthood. It's all been said, and it's all soooo cliche, but... it's been the best part of my life. The supply of my daily doses of laughter, love, hugs, messy rooms and dirty faces - once the sole responsibility of my husband, now come from the kindest, smartest, sweetest little people I always wanted to have as a parent. I love em from their toes to their nose. That we have to test their blood every two hours, then calculate the amount of insulin needed for that level, in combination with the amount of carbs they are about to consume, then make sure they eat all the dosed food, then make sure afterwards that their blood/sugar levels don't fall low, or high... and deal with that appropriately; well that is just our dues for having these little people bless our lives. And bless it, they do.

Therapy has not cured me of the odd, instantaneous tearing up episode (they still happen, not often), but it does provide perspective.

Thursday, August 19, 2010

"The FlyOveriest of all the Flyover States"

It's been ages since I've logged in/blogged in here. I subbed right up until the last week of school, then headed home for an impromtu visit to NS with my eldest. We'd received bad news about the health of one of my grandmothers, so I decided to go home for quick trip and it was wonderful. I got a great visit in with both of my grandmothers, my own family, lots of aunts, cousins, and of course, some great friends. Sadly, the week after I got back, my other grandmother passed away. I could write a book on her - she was a great lady and was 97.5 years old. She didn't complain about one thing in her life - ever.

Ellie and I had a great time in NS. When we came back, my husband's parents were here and spent 2 weeks in Calgary. Gary's father helped him build a shed. Gary loves doing things with his Dad. So does Bradley. So that was nice. Then one of my ALL TIME best friends, Charla, and her husband Chris came out for a visit. We all love them and it was super fun when there were here. Their visit ended the morning after we went to our friends' wedding, which was another fantastic time. By then, my poor body was exhausted - my overworked liver most of all, lol, so I spent a week eating only veggies quinoa and trying to exercise as much as possible.

Then, we packed up and headed south of the border. Gary is working a great deal in Gillette, Wyoming; "The Energy Capital of the USA". His company has several condos down there, and Gary was feeling bad about being away from the kids so much while they were off of school, so we spent a weekend driving (and shopping...) through Montana, and 14 hours of driving later, we arrived at the condo. We were pleasantly surprised to find out the complex had a beautiful pool and hot tub and gym, etc. We didn't know that and were only going down so that we'd see Gary in the evenings. Considering he worked 12-15 hour days, 6 days/week, the pool turned out to be a lifesaver. The kids LOVED it. My friends in Calgary kept me informed of how awful the weather was in Calgary, so we were pretty pleased to be in Gillette.

Although only there for 2 weeks, I could write a book about Gillette, it's people and it's total AMERICAN-NESS. People were friendly and considered us to be big city folks. Where we were staying housed many people who were there for the coal and gas industries, so we also spent a lot of time with Americans from all over the USA. Everyone was nice. But, for the first time in many visits to the States (I even lived there for almost a year in the mid 90s) I did notice big cultural differences between Canada and the US. That is worth a few posts alone.

I enjoyed our time there and wouldn't want to be unkind, but the Wyoming landscape around Gillette isn't what you might expect. A little less Montana and a little more prairie-ish hills covered with sage bushes. That, combined with its' lack of TJ Maxx and Targets inspired me to affectionately refer to it as "The FlyOveriest of all the Flyover States".

We spent Gary's day off driving to South Dakota, through the Jewel Cave National Park, to Mt Rushmore, then onto Rapid City, for more shopping splendour. We also had our anniversary dinner there, at a great Mexican restaurant called On the Border. The northwestern Midwest is full of great Mexican restaurants, and obviously some great Mexican people.

I know this is long and boring, but it seemed strange to just jump in and start blogging again without some sort of update. And leave it to me to make a short story long.

Now we're back in Calgary with two weeks left until school. It's full of appointments. My baby boy starts full day school - Grade One- and I feel anxious about it. He'll be in charge of doing his own blood/glucose tests on his own. But, he's excited. Plus, he's got about 6 new Star Wars shirts (compliments of our US shopping) to wear. We even found a Diary of a Wimpy Kid shirt for him. It says, "I'M PRETTY MUCH THE BEST PERSON I KNOW". It gets lots of laughs.

Monday, May 17, 2010

The Pianist

Today was a long-ish day. It started at 4am when Gary left for work in Mexico, and it didn't stop until after 7:00 when we got home from swimming lessons. I was trying to get all the kids' teeth brushed and read to and tucked in, all the while Ellie was playing the piano.

She loves to play the piano. She practices a lot. A lot. It's loud. Sometimes, it sounds great, and sometimes it sounds like an accompaniment to a descent into madness. I had Kate and Brad upstairs and had asked Ellie to get off the piano about 10 times. I came downstairs, ready to tell her FIRMLY to get upstairs.

But, I looked at her little body sitting on that piano bench, so focused on her music that instead I went over, sat down by her and told her how great she sounded.

"Do you want me to play something for you, Mummy?" Of course, I said, I'd love that. So, we sat there side by side, snuggled-ish and she played several songs. She played some nice ones very well. And, she was so happy. So was I.

Saturday, April 24, 2010

'Pencess Dress!'

I've never watched Dancing With the Stars before. But we caught an early episode this season, and all of us in this house - Gary, myself, Ellie, Brad, Kate and Liezel, were mesmerized by Kate Gosselin's dancing (yes, mesmerized is probably the right word). We watched it, rewound it, and watched it again (what would we do without dvr?) And so we were hooked. I actually really like the show. We get the early feed from Detroit, so it's on at 6pm and we all snuggle up and watch it.

Except for Katey. As soon as she hears the DWTS music, she runs up to her room, then emerges in a dress as either Belle, Cinderella, Snow White or Aurora, with matching plastic princess shoes. While Dancing with the Stars is on, Kate provides the real entertainment by dancing around the living room in her princess dress. "Look me, look me! I Pencess." We all love it. You can feel the happy in the room.

Real happiness isn't a tidy house, quiet kids or a spouse who cleans up after himself. Although, who am I kidding - those things help after a long day... and while I'm at it, I could do with less pee backsplash in the bathroom. Bradley, I'm talking to you. At least I think I am. My real, raw happiness comes from these shared, lovely funny moments, and my conscience awareness of them. I want to remember all the details. These are, as they say, the best days...

Thursday, April 8, 2010

Bradley's new favourite joke

Ellie is obsessed with the Diary of a Wimpy Kid series of books. Which means that Brad is also smitten with them. I thought the books might be a little too old for Ellie; let alone Brad. Bradley's new favourite joke, courtesy of DoaWK...

Boy goes to the Dr's office. Says he needs a new bum, because his current bum has a crack in it.

Cue roars of laughter.

*Please note: Mom insists they say Bum instead of Butt when telling this joke. The book says Butt.

** Further proof that no matter how much a mother can try to discourage her kids (boys especially) from potty humour, it is a futile effort.