Lesson Learned

Never again will I attempt a “quiet day.”

Sunday was supposed to be our quiet day – time to just hang out around the house and do nothing. It was honestly one of the most horrible experiences I’ve had in a while. I like the buzz of our crazy life. I like keeping busy and I go a bit stir crazy when forced to do nothing.

Since both Sáin and Aidan have been raised pretty much solely by me they are the same way. I don't know if this is a good or bad thing but it does work well into our hectic life.

The worst part of our "quiet day" -- I discovered that when things are quiet there is way too much to think about and I get stressed. I guess the key to my happiness is chaos… luckily I am good at chaos.

Happy Monday Things:

• The new Medtronic/LifeScan linked meter came out! We will be getting ours soon.
• Sunday is Sáin’s First Communion – she’s so excited.
• The tickets for the spaghetti dinner are ready to print. (Then comes the fun part – cutting them out.)
• Our school team is seriously in the lead for Beat the Bridge.
• In 3 weeks we will be on a plane to Toronto and the TTC is not on strike!
• And the happiest thing of all – Sáin’s blood sugars were in range 2 nights in a row!

(As for the picture, that's kind of what I look like after a "quiet day!" I think I will stick to my crazy life.)

Silver Linings

You can drive yourself mad focusing on the negative aspects of this disease. Sometimes you just have to stop and look for the positives.

Silver linings (in a purely random order):

• Sáin is amazingly aware of EVERYTHING she eats
• Sáin can speak very well in front of large crowds
• We don’t have the portion control problem many people have. All our food has to be portion controlled
• No one in our family is afraid of needles. As a matter of fact, we have to do a sweep through the house before anyone comes over because we’re a little too comfortable with sharps and leave them lying around.
• I’ve learned the plunger from a syringe works really well if someone accidently locks the bathroom door
• We’ve met the most amazing people through JDRF
• I understand RF technology a lot better now that Sáin has the pump. This comes in handy working where I do.
• We probably would never have met all the politicians, celebrities and researchers if Sáin didn’t have diabetes
• Sáin and Aidan are learning at a young age how to fight for a cause
• If it weren’t for diabetes I would never have known the pure joy in receiving a donation from a complete stranger
• Both kids can count by 15s (carb exchanges are counted by 15)
• Midnight blood sugar tests give me an excuse to stay up to watch The Hour every night (and really, is there a better way to end the day than hanging out with George Stroumboulopoulos? Okay – George after a hockey game is slightly better.)
• The looks I got taking sharps boxes into the downtown needle exchange were priceless and I never would’ve gotten to do that before Sáin was diagnosed.

I’m sure there are many more positives but that’s just a few.

I promised Sáin a message in French so this is to her:

Je vous aime ma belle fille et je suis très fier de tout vous faites.

Kick Off Pictures

Bonnie from JDRF sent these pictures on to us of Friday's Nordstrom kick off lunch... thought I would share.

Oddly painful memories

I was going through my pictures today and found this one. This is the last Christmas before Sain's diagnosis. She wanted the pony dance studio so much and I can remember her laugh all morning when she was playing with it.

Here's the painful part -- that was the last time I can remember Sain's laugh being truly innocent. Her health deteriorated shortly after that Christmas and the laugh, once it returned, was less innocent and more guarded. Sure, she still laughs and plays and behaves like other carefree 8 year olds but if you listen closely you can hear the guarded maturity of someone who has seen too much. Christmas is supposed to be a time of joy so why am I sitting at my computer crying over Christmas memories?

I joke with people about what I would give up/do for a cure but really, haven't we given up enough?

(Sorry for the depressing post. If it makes it any better -- Sain and Aidan are supposed to be asleep right now but I can hear them alternating between singing The Hockey Song and the Toronto Song. What good little Canadians! (I used the Toronto Song to teach them the provinces -- as anyone knows, I love Toronto and Ontario does not suck.) It's really quite funny!)

Like most weekends, this one was crazy. Friday Sáin was the youth ambassador for the Tacoma Nordstrom Beat the Bridge kick off lunch. It amazes me how comfortable she is talking in front of a large group and telling her story. You put a microphone in that kid’s hand and she transforms into an entertainer/educator. Sáin is very good at telling her story to adults; she struggles a bit more with kids. I think Sáin doesn’t want to be perceived as different by her peers. Slowly this is changing… JDRF events really seem to help that. Sáin’s favorite part of the kick off lunches is the Q & A sessions. She loves answering questions and puts a lot of thought into what she says. My favorite answer was to the question, “What’s the first thing you will do when there’s a cure?” Her response, “Well, the first thing I will do is tell my mom so she can get me the cure.”

After Nordstrom’s we went up to Kaufer’s and bought Sáin’s veil and gloves for first communion. Pictures have been uploaded to our flickr account. I can’t believe how grown up she looks!

Sáin and Aidan were at their dad’s on Saturday so I tried to relax and do nothing. I’m not very good at that. I spent most of the day forcing myself to “relax” and watch hockey. Truthfully, I spent the day with the hockey games on but every few minutes I worried how Sáin’s blood sugars were doing. Once a month I have the same worries: did I packed enough food/juice to cover any lows? Will they remember to test before bed? Will they check in the middle of the night if need be? Will the carb calculations be correct? One weekend a month I am supposed to be able to relax and sleep but things don’t often turn out the way they are supposed to!

Sunday was bowling with St. Martin’s alums and seniors. It was a lot of fun and was great to see some old friends. If I were half the bowler my dad is I would’ve won first prize. I didn’t do too poorly but the competitive side of me knows I could’ve done better.

Okay, on to countdowns:

• 13 days until Sáin’s first communion
• 27 days until Beat the Bridge
• 28 days until we’re in Toronto!!!
• 45 days until Aidan is 5
• And I have no idea how many days until it stops snowing in Seattle!

(picture is of Aidan at the kick off on Friday)

Best Quote Ever

Sain referring to our snow over the weekend -- "The weather around here is as unpredictable as my 1:00 am blood sugar readings."

Diabetes induced OCD?

I’ve never been a very OCD person. You could argue that I’m a bit obsessive about hockey but nothing truly OCD about me. I think diabetes has changed that.

The other night I caught myself obsessively organizing Sáin’s reservoirs. I must’ve spent a good 10 minutes arranging them in the butter compartment of our refrigerator.

Finally I stopped myself (even though I am still a bit bothered by the fact that the far left reservoir has slightly more insulin and the second to the right is slightly askew.)

Thinking this was an isolated incident I went back to the living room and noticed the needles and plungers from the reservoirs obsessively arranged on the reservoir box.

A psychiatrist would have a field day with this behavior. (Yes, I realize this is me trying to control the disease that is nearly impossible to control in an 8 year old kid. I get that.)

Tennyson knocked the reservoir box over and with one slam of the refrigerator door the reservoirs were out of alignment and thus my OCD episode was over.

I am glad I took pictures – they are funky reminders of what this disease can do to a person even if they don’t have the disease.

Sáin raising her voice!

Sáin has been a youth ambassador for JDRF for a couple years. Here's her speech from last weeks Beat the Bridge kick off at PACCAR. (it makes me proud when I see her fighting for a cure!):

Hi my name is Sáin and I am 8 years old. On April 5th 2005 I was diagnosed with Type 1 diabetes. I was only 5 years old. The doctors told my mom that if she’d waited 12 more hours I might not have survived. I had to spend a week at Children’s Hospital. It was scary. Since diagnosis I have had over 5000 insulin shots and almost 10,000 finger pokes. I have also been to the emergency room 2 times and missed over 50 days of school (but I am still an honor student.) In January I switched to an insulin pump. Now I don’t have to have as many shots but I have to test a lot and have to change my infusion set every 2 to 3 days. This will be our 4th year doing beat the bridge. Every year we raise money to help find a cure for me and other people like me. Companies like Paccar help raise a lot of money for us and I really appreciate it. Thank you for helping us find a cure. It really means a lot to me.

Raise Your Voice for Type 1 Diabetes (and happy birthday dad!)

Today is Raise your Voice for Type 1 Diabetes Day. It is also my dad’s birthday – Happy Birthday, Dad! (powpowpow I got you!)

The point of today is to raise awareness about type 1 so I had all intentions of writing a poignant, well thought out post but alas, the midnight, 2 am, and 4:30 am blood sugar tests have taken a toll on my creativity but I will do my best.

(In case you’re wondering, the extra tests were because Sáin was in the low range of good at bedtime and I had a nagging feeling she was going to drop. She didn’t! I like it when the nagging feelings are wrong.)

Besides the obvious effects on our lives like the pokes, fears, doctor’s visits, ER visits, the nearly $20,000 we’ve spent in 3 years etc, diabetes gave me focus. I have a goal and I will do all I can to see that goal through. You could almost divide my life in two – pre-diabetes and post-diabetes. The pre-diabetes me was painfully private. I only let a few people in and NEVER shared my private pains. Now that’s all changed.

If it takes me blogging, talking, crying in front of strangers to get Sáin a cure then that is what I will do. I will now talk in front of a room of complete strangers and tell them about the most painful, scary day of my life. Now I will cry in front of senators and researchers.

Now it’s more pressing. My privacy doesn’t matter; Sáin matters and getting her a cure matters.

I can’t wait for the day I can go back to my private existence but until there's a cure I will continue to raise my voice for type 1 diabetes because Sáin is too important not to!

A Post for Aidan

I could write pages on Aidan. He's an amazing little boy. The natural compassion he has for humanity is awe inspiring. I could give endless examples of this but the best way to describe Aidan is with this:

I was doing a 2 am blood sugar test on Sain this morning. She slept through the test but Aidan woke up. When I saw that he was awake I went over and gave him a hug (no kisses for my almost 5 year old big boy) and covered him back up. He whispered to me, "Mommy, I know what I want for my birthday. I want a cure for Sain."

It's typical Aidan to think of someone else first. In honor of my big guy (actually he's Papa's big guy and my little boy) I've started the countdown to Aidan's 5th birthday on the right. May it be the best 5th birthday ever!

What's in a name?

Sáin’s name is unique – I realize than. She’s used to people calling her “Sane”. (It’s pronounced “Shane” but she doesn’t get angry.) A lot of people ask so here’s the story:

I did my thesis work on the writings of Patrick Pearse and, because of this, had to work a lot in Gaelic. I came across Sáin’s name and loved the way it looked. The only modern usage of the word is in Welsh meaning “sound”. When I submitted it for “expert” translation they come up with the meaning as “little old wise one” which fits Sáin perfectly. However you translate it, her name fits. (If only I could find it on a bike license plate!)

Here’s the most recent translation I was able to find:

Sain pron. ‘sa’hn’ (Scots Gaelic). Similar to the Native American word translated as ‘smudge’. Saining is a process of burning incense, particularly herbs, to cleanse, lift or alter the atmosphere or energy of a place or person.

Sain's diabetes video

We finally got it done... here it is:

Anniversary Day

Okay, today is the day I dread every year. It's the day when all the emotion, all the pain and all the memories come back. The rest of the year I do pretty well at staying positive, focusing on a cure and doing everything in my power to give Sain a normal childhood but on 05 April it's hard. I think we did pretty well this year. Here's our day:

Let Sain sleep in until 9:30 (very late for her)

Let Sain eat ice cream for breakfast

Downloaded new songs on iTunes

Let Sain make our CD soundtrack for the day

Went to Kent Station and bought new Webkinz

Played tourist around Kent Station for a while

Went to Children's Hospital for lunch

(along the way we danced wildly to Flogging Molly & Miranda Cosgrove -- that's how diverse Sain is)

Hung out at Children's for a while mainly playing the the courtyard with other kids

Went to Galway Traders to buy Sain's first communion present

(She picked out a beautiful celtic cross necklace and earrings)

Came home -- Aidan played with the boy down the street and Sain and I had a chance to for some "girl time"

Tried on first communion dress with jewelry

Watched the Leafs last televised game of the season (we won't talk about that though)

Went to grandma and grandpa's house to give them their new flag

Had dinner at jack-in-the-box

Came home and adopted the new webkinz

Got Sain and Aidan to bed by 9:15

I knew the day was a success when Sain came out at 9:20, gave me a big hug and said, "Thank you." She didn't need to say what she was thanking me for. This is the first anniversary that she didn't go to bed crying. (As a matter of fact I can hear her and Aidan back in their room laughing. I'll be lucky if they're asleep by 11:00. :) )

Here's a few pictures from our day:

Reminders

Next to the pictures and quotes hung in my cube I keep these reminders. On the left is the emergency pass from Sáin’s diagnosis and on the right is an ER bracelet from Sáin’s first trip back to the hospital. Those were two of the scariest days in my life. When days are tough I look at these reminders and remember what’s important.

Tomorrow is Sáin’s anniversary – it will be 3 years since this disease invaded our lives. In some ways it feels like just yesterday and in other ways I can’t remember life before the disease.

Three years ago tomorrow I promised my little girl I would find a cure. I have to believe we will get there.

Quote Junky

Okay, I’m a quote junky. I will be the first to admit it. I am surrounded by quotes at work, at home and even a few in my car. If I hear or read something I like I write it down. Most my books are so written in that no one would ever want to borrow them. I found this quote today and I love it.

“One ought never to turn one's back on a threatened danger and try to run away from it. If you do that, you will double the danger. But if you meet it promptly and without flinching, you will reduce the danger by half. Never run away from anything. Never!”
- Winston Churchill

I see so many parents in denial about their kid’s diabetes… it makes me sad. I tend to view it as an enemy that we have to live with (for now.) I meet it head on and I won’t let it win. I like to think I am bigger and stronger than the disease. Who knows if I am really bigger or stronger but I can tell you I am definitely more determined and probably more stubborn. I love that Sáin views it that way, too. To use another quote from a great blog that I read every morning, “diabetes doesn’t define me, it just helps explain who I am.”

My sarcastic love-fest

I love insurance companies. I love that they know better than I do what is best for my kid. I love that they know more than my kid’s doctors and more than medical experts. I love it when they tell me their bottom line is more important than my daughter’s life. (Okay, the exact words were “we’re responsible to our shareholders not our policyholders” so I took it that meant their bottom line is more important than Sáin.) And since I’m on the subject, I also love the FDA. It makes so much sense to push through drugs that will make the drug companies rich (who cares if it kills the patients) but to drag your feet on research backing CGMs that could, God forbid, save my child’s life and prevent serious complications!

Okay – this one is serious. I do love Medtronic and I do love Children’s Hospital in Seattle. The fact that they are willing to fight for my kid (and sent along the “shareholders” quote to their legal department) gives me hope.