Beat the Bridge to Beat Diabetes 2010

Letters will be sent next week after our website is officially set up. In the meantime, here is a preview of our letter.

Dear Friends and Family

2010 is a momentous year for Sáin. It’s the year she made the school play; the year she gets officially recognized as an honor roll student; and, sadly, the year that marks two diabetes landmarks.

On April 5th Sáin will mark her fifth diagnosis anniversary. Most families I know living this disease are told a cure will come within five years. We were no exception.

The second landmark is the hardest for me. This fall, about one week after her 11th birthday, Sáin will have official lived longer with diabetes than she did without it. This means more than half her young life has been spent worrying about highs, lows, carb counts, and, most recently, complications. I don’t know too many other parents who have had their 10 year old say, “Mom, I’m really scared I have kidney disease.” Luckily she does not have kidney disease yet but too many of the early signs are there to ignore.

I say it every year, this disease is not fair, but somehow it seems even less fair now. I’ve watched Sáin struggle to be “normal” while trying to maintain her health and I’ve seen this disease rob her of the childhood innocence that she is now too old to ever get back. I watched my 5 year old cry while praying for her cure and just the other day I watched that same child still crying while praying for her cure.

2010 is also the sixth year for Team Sáin. We’ve gone through a few incarnations but at the core we’ve always been the same – One family coming together for one day a year to fight for Sáin.

Please join us for Beat the Bridge to Beat Diabetes 2010.

Help us show Sáin she’s too important not to find a cure! We truly appreciate your support!

Thank you!

Busy Times

I could easily write a post of excuses but I will leave my nearly 2 months since blogging at this -- life is busy!

Here are a few things that have been happening:

I got a job! In early September I got a great job at Clearwire (of Clear depending if you're in a 4G market.) I work with a great group of people and am doing more of what I like.

Sain and Aidan started school. Aidan is loving first grade and is really growing up this year. Sain started fourth grade and is also loving school. She's gotten a lot more independent and even did her own infusion set change at school!

I started karate. After months of telling the kids I would join I finally took the plunge. I've discovered it's very fun to hit and kick things -- and a great stress reliever!

Sain also turned 10 about a week ago. In some ways it's hard to believe she's that old but, in other ways, she seems much older.

Just before her birthday Sain had her labs done. For the first time her results were less than favorable. It was/is a hard reality check proving this disease, no matter how controlled, is serious. I'm not going into a lot of details -- I will do that at a later time -- but we've added some meds and will have labs again in December. Best case scenerio is these three months will take care of everything and we can move on.

More to come later...

Belt Testing

There are so many reasons why I am proud of Sain. She's a great kid, kind to people, does very well in school, etc. But one of the things I am most proud of is her determination -- she never lets diabetes win and won't let anyone tell her she can't do something.

When we saw Will Cross speak in July he said something that really hit home. "Find the thing you love to do that makes your diabetes secondary and keep doing it." Martial arts makes Sain's disease secondary.

Below you can see a little of my daughter's passion.

(Today was Sain's last PeeWee class -- tomorrow she begins Juniors (ages 10-14) It should be interesting since this will be the first time in her nearly 10 years that she's the youngest in a class.)

I wish...

I was smarter than this disease. I wish I could somehow know what it was doing. I wish this disease was like math and had an answer. If this, then that.

But it doesn't.

I feel like I'm at war; at war with an enemy far more intelligent, far more advanced than me. Nothing about this arrogant enemy is predictable. Nothing about it is fair or humane. There is no Geneva Convention with this disease.

After a week of amazingly good numbers and no spikes or dips even at karate camp, Sain is high. Not an "oh, she's running a bit high." No, she's HIGH and I can't get her to stay down. We've done set changes, insulin changes, everything -- 20 + units of correction alone yesterday with precious little results.

Maybe it was a mistake letting her go to a birthday party after getting sick at class; maybe I shouldn't have tried to be somewhat social while mapping out strategies of our next move in my head. But I couldn't let it win -- not yesterday. Yesterday we had to pretend to be normal.

My wish for today -- no ketones and that somehow the correction I gave Sain at 4 am is working and that when I go in the living room to check (camp outs in the living room are one of our "sick day" traditions) there are double down arrows from the sensor!

The somewhat evil, somewhat wonderful backyard

I have a love/hate relationship with our backyard. I love it's size (about 1/4 acre) for the kids to play in, I love that it is fenced, and I really love sitting back there looking at the stars (there are no street lights around.) But that is where the love ends.

I truly hate mowing this yard. It is huge, bumpy and slightly sloping. On the best day it is not a fun yard to mow and today was far from the best day.

My mower has been in the shop for the last month or so. During that time I kept the front yard mowed using my dad's electric mower but the backyard was neglected. The grass (truthfully, it's mostly weeds) was halfway up my thighs but I was determined to get it mowed today.

Four hours, three complete mowing jobs (on three different settings) and a very full yard waste bin later I am happy to say it's done!

The best part about the yard being mowed -- seeing the kids play out back again!

(The worst part is knowing it will need mowing again in a week!)

The not-so-happy Monday night post

I tried.

I tried and tried and then tried some more to write a positive blog post but I can't do it. It's not that things are horrible; I know they could be worse. It's not that good things haven't happened; I could easily blog about the kids' trip to Oregon, the JDRF banquet or karate camp this week.

That's not it. I am just tired.

I am tired of things being hard. I am tired of people being stupid. And I am tired of having to fight for every little thing in my life.

I am tired of putting on a happy face when I really want to just be pissed off and yell at the world. I am tired of people telling me things will get better -- really? After 20 + years of hearing that you stop believing it.

I am tired of people who have never really used the US medical system telling me it's fine -- what I wish for all those who think it's fine is a chronically ill child. (Sounds mean, I know, but at least I'm honest.) I'll give you a year fighting for your child's life and future then lets see how you feel.

But what I am most tired of is nothing going right. Let me clarify, things have gone right but every thing has been a battle. The big things, the small things and everything in between has involved so much work. Can't something just be easy?

Growing Up

For the last 4+ years Sain has been happy wearing her medical bracelet. I owe so much of this to N-Style ID.

When Sain was first diagnosed I searched and searched and searched for a medical bracelet that would fit Sain's style. (Sain has been choosing her own style since well before her first birthday. If you don't believe me, just ask anyone who tried to dress her as a baby -- Sain's got definite opinions and is heavily influenced by one of her favorite TV shows, Fashion Files.) The day I discovered N-Style ID was a very happy day in our household.

Sain wore the Jelly Bands for 4 years. She had everything from the solids to the stars to the polka dots. They are great because of the low price and the variety. But Sain is growing up and ready for a change.

Enter the medical heart charms. It took two charms to put all the info we needed. (Having a long last name and two chronic diseases takes up a lot of letter!)

Thank you, N-Style ID for allowing my daughter's medical jewelry to grow up with her!

Interviews, diabetes and the week ahead

So, this morning I had a phone interview for an HRIS position that sounds really interesting. I was worried about doing a phone interview with both kids home. I could picture Aidan playing loudly with his Lego pirates, Sain's alarms going off or having a low, Tennyson meowing or getting the "kitty cat crazies" that he so often gets but none of this happened.

The phone interview went quite well and both kids (and the cat) were incredibly well behaved. Sain and Aidan played quietly in their rooms and Tennyson slept. Their impressive behavor earned the kids blizzards from DQ. (Tennyson will get treats when he wakes up.)

I think the interview went well. The recruiter was impressed with my background and knowledge so I am hoping for some positive results. But this lay off has really messed with my confidence. I've never really been a cocky person but in the past I've been able to believe in my skills and project at least some confidence. It's been really hard to do that of late.

On the diabetes front:
Sain's numbers have been running a bit high all summer. I just adjusted her evening basal rates and things seem to be going better. Her next endo appointment isn't until September but I am happy it's the big appointment and that they will be doing full labs. The crazy numbers seem to be indicating a spike in hormones -- oh the fun times ahead!! It's times like these that I really love Sain's CGM!

(A few people have expressed concern about my lack of health insurance and Sain's diabetes care. Luckily, Sain and Aidan are both covered through their dad's insurance. As much as I really wish I had my own health insurance right now -- there's nothing quite like the fear of illness when you are uninsured -- I would rather the kids have coverage than me. Besides, the coverage they have now is Aetna and Aetna is paying at least some of Sain's CGM!)

This week:

Today both kids have appointments with our wonderful family doctor, Dr. Molina. Both kids are getting asthma check ups and I am hoping there is something that will help both of them. Scariest moment from the last few weeks -- both kids were having pretty bad asthma attacks at the same time when Sain wheezed, "I feel low." Fun!

The rest of the week is filled with karate and (hopefully) interviews.

Saturday is packed. We have karate all morning, demo practice after that, Sain's best friend's birthday party at the karate school, then we've been invited to watch the fights (UFC) at some folks from the karate school's house. (Thank God Georges St. Pierre is fighting -- he's the only UFC fighter I know!)

Sunday Sain (and the rest of the ACMMA demo team) will be performing on the main stage at Kent Cornucopia Days at noon and both kids will be marching in the parade afterwards.

It should be a fun week. This summer is going way too quickly!

Not feeling too creative

Kate stole this "quiz" from Shelley and I stole it from Kate.

Outside my window ... two birds are having a very loud conversation in my backyard.

I am thinking ... about how arbitrary life is.

I am thankful for ... my dad (and mom, too.) My kids, my cat, friends who genuinely care about me and my sanity.

From the kitchen ... the smell of the pizza I just cooked for tonight’s dinner. Sáin’s last class tonight ends at 7:00 so we won’t be home until 7:30 so dinner has to be quick and easy!

I am wearing ... jeans, a JDRF hoodie and skate shoes – I am so predictable.

I am creating ... an interesting childhood for my kids. I feel incredibly guilty about the lack of stability in their lives but they are both happy, intelligent, well behaved kids so I must be doing something right.

I am going ... to the karate school in about 45 minutes.

I am reading ... Allie Finkle’s Rules for Girls Book 2, New Girl by Meg Cabot. Sáin and I have been reading the series together.

I am hoping ... for a new (good) job soon.

I am hearing ... Aidan shooting his Lego dinosaurs with his Nerf gun, Sáin playing her DS and Tennyson crunching his dry food.

Around the house ... there is too much stuff

One of my favorite things ... is Sáin’s Continuous Glucose Monitor. It is truly an amazing tool and worth all the insurance battles I fought/fight.

A few plans for the rest of the week ... regular karate class and demo team practice tonight. Karate picnic Saturday during the day and demo at the Kent International Festival in the evening with Sáin, Aidan and Sáin’s best friend, Hannah. BBQ with my niece, Amanda, and her amazing family whom I haven’t seen in 17 years on Sunday.

A picture to share ... Aidan’s friend Piper’s dad took some great pictures at Aidan’s party. In this one Aidan and his friend, Mason, are teaming up against their instructor, Chris in a wrestling match. Aidan is so happy!

8 Things

Okay, for you, Kate, I will do this:

8 Things I'm Looking Forward To

1. Aidan’s 6th birthday party tomorrow.
2. Both kids sleeping well tonight (Thank you, Benadryl!)
3. A night alone next Saturday. (If both kids really go their dad’s place, it will be the first time I’ve been alone since November!)
4. My lawn mower getting fixed
5. The “one day vacations” Sáin, Aidan and I are planning this summer
6. The 2009-10 NHL Season – I really miss my Leafs.
7. Sleeping more than 3 hours (hopefully) tonight
8. Last but not least, a cure

8 Things I Did Yesterday

1. Ordered a Wall-e birthday cake and reminded the baker Aidan’s name is spelled “an” not “en” (Who would’ve thought Aidan would be my kid whose name is constantly misspelled?)
2. Overspent at the gluten-free bakery in Whole Foods
3. Had a camp out in the living room.
4. Ate dinner in the car, again.
5. Led a successful meeting on a corporate wellness program
6. Took my cat outside on his leash
7. Kissed my five year old goodnight for the last time (He turned 6 today.)
8. Spent over 2 hours sitting on a hard bench at the martial arts studio.

Things I Wish I Could Do

1. Cure type 1 diabetes
2. Stay at home with my kids (while still making enough money to live on)
3. Go back to school
4. run without horrible hip pain
5. move back to Toronto
6. Sleep through the night
7. Travel through Europe with the kids all summer.
8. get Sáin’s blood sugar to stay down in the hot weather

8 Shows I Watch

1. Hockey Night in Canada
2. The Hour
3. Reaper (I know, it’s not on anymore but we did watch it religiously)
4. The Simpsons
5. iCarly (Sáin’s favorite)
6. Clone Wars (Aidan’s favorite)
7. Jeopardy
8. Torchwood

Beat the Bridge -- our first 5 years

2005 -- 1 month post-diagnosis and still unaware of what this
disease really meant.


2006 -- surviving kindergarten on NPH required a lot of discipline
for a 6 year old!



2007 -- first grade was still tough but the discipline was now
second nature

2008 - after a hellish 3 months on Lantus (Sain does not respond

well at all to Lantus) the pump is making life easier in second grade

2009 -- third grade with pump and CGM attached. You

would think life would be simpler now and in ways it is. But

I've learned a lot in these last five yearsand the more I learn,

the more I desperately want that illusive cure for Sain.

She doesn't deserve this -- no one does!

Our Morning by the Numbers

7 – the time we dropped Aidan off at Grandma and Grandpa’s so we could make it to Sáin’s endo appointment at Children’s on time.

2 – the number of security “check points” now required to get into Children’s. (One flu check and one security badge check)

34.5 – the number of kilograms Sáin now weighs. (about 76 pounds – only 6 pounds less than I weighed when I started high school!)

139.1 – the number of centimeters tall Sáin is. (about 4 ft 7.75 inches)

4.4 – the number of centimeters she’s grown in only 3 months! (that’s 1.75 inches!)

8 – Sáin’s A1C. Not as good as we would like but it will be better next time.

205 – what an 8 A1C equates to in BG averages

6 – the number of fasts we get to do in the next two weeks in order to reset her basal rates. (I say “we” because I do the fasts with Sáin. It’s unfair to make a kid fast alone.)

.4 – the bolus Sáin needs to give herself before disconnecting for karate. I’ve been reluctant to give a bolus before karate for fear of lows but a jump of 1.1 in her A1C changed my (and her endo’s) thinking

75 – Sáin’s new sensitivity setting on her pump. (This mainly just means she’s getting bigger and requires more insulin. It’s her first sensitivity change since diagnosis.)

And, most importantly to Sáin, 3 – the number of weeks until she’s officially a 4th grader!

A year ago...

I was here and I was happy.

Burn Out

I am tired of this disease.

I am tired of what it does to my daughter. I am tired of what it does to my son. I am tired of the extra pressure it puts on my parents. And I am tired of what it does to me.

I am tired of having to contact the school when kids are extra stupid (Sáin deals with most playground issues on her own but I step in when need be.) And I am tired of how the other parents then perceive me.

I am tired of being on the brink of financial ruin in order to keep my kid healthy and I am really tired of the US healthcare system. Who knew prevention was a 4 letter word?

I am tired of beeps, alarms, and wonky numbers. And I am tired of not being able to fix it.

I am tired of type 2s thinking they are the same as type 1s. And I am tired of parents who freak out when their kid sneezes or falls down thinking they know how I feel.

And as tired as I am of fighting for a cure, that cure is the only thing that will eliminate the other things I am tired of.

So, I will keep fighting.

Thank you to all who have donated to our team. Beat the Bridge is Sunday and it’s looking like it might be sunny!

More than martial arts learned at ACMMA

Monday is not usually a karate day so I thought that was why Sáin was so quiet after class. My dad mentioned that Master Dye had talked to the students after class but things get hectic when the kids get home so I didn’t really get to hear what they talked about.

The evening went on and Sáin was still quiet.

Just before bed she stopped Aidan in the hallway. “Promise me you will never play the choking game – okay?” He promised but didn’t really understand what he was promising. Tears filled Sáin’s eyes and I knew it was time to talk.

We talked for a good hour about the choking game, peer pressure and how one bad decision can do a lot of damage. Aidan understood some but Sáin took it all in. Some things are tough to talk about but those tough things are the most important. Please read this story and talk to your kids!

Thank you Master Dye, Jennifer, Chris and everyone at ACMMA for keeping my kids safe in so many ways!

Our Weekend

We spent this last weekend in Vancouver. It was great to see the folks up there and just nice to get away for a day or two.

The kids spent a lot of time in the pool. It was nice to have an indoor pool since the weather wasn't too warm. We discovered sensors don't stay in the best when you spend long hours in the pool -- even when double taped!

Sain and Nikitta had fun drawing on the sidewalk. By the end of the evening the entire area was covered. When it got dark they continued their drawings inside.

Aidan was so happy to see Aunt Connie and to show her how happy Dogdog is. (Connie got Dogdog for Aidan when he was born.)

(Sain, Aidan, Connie and Kelton -- I can't believe Kelton is almost 17!)

On the way home we made one last stop before the border -- this is our favorite park in White Rock.

Encouraging Stuff!

http://uk.reuters.com/article/rbssHealthcareNews/idUKN1338055520090414

Very random happenings from the last week, or so

I've been negligent and not posted in a bit... sorry. I was having a bit of a contemplative Holy Week with too much on my mind. I think I'm back to normal now. (Have I ever really been "normal" though?)

05 April was Sáin’s 4th diagnosis anniversary. We played it pretty low key this year. To “celebrate” Sáin, Aidan and I went to Sheri’s for dessert… it seemed fitting to celebrate diabetes with sugar!

The rest of the week was pretty mellow. (There is a funny story about Aidan singing “spider pig” from the Simpson’s movie when we were supposed to be quietly walking out of church on Palm Sunday but besides that there was lots of karate, lots of school work, lots of Easter prep)

Last Saturday we attended the late night Easter vigil. Things were going along well until I heard (almost simultaneously) the distinctive CGM alarm and the four dreaded words, “Mom, I feel low.” Sure enough, Sáin was low (62) but I had planned ahead and packed 2 extra juices. We treated and thought all was clear.

About 15 minutes later I look over and Sáin is staring off into space with a glazed look on her face. I test – 54. Luckily I have the second juice. Sáin drinks and quickly looks better.

Another 10 minutes later we are to communion and I hear those dreaded words again. We test and she’s only 55. At this point I start to panic – I’ve got no more fast acting sugar with me. We somehow make it through communion (the only thing I could think at this time was how much I wish the body of Christ had a lot higher carb count) and quietly sneak out.

I awkwardly carried my 74 pound kid back to the car – conveniently parked blocks away at the request of our priest to leave parking spots for the folks who do not attend as often. I got 2 more juices in her and all seemed well.

The rest of Easter was calm. The kids made out like bandits with money from both the Easter Bunny and Grandma and Grandpa (more from Grandma and Grandpa – the Easter Bunny’s really feeling the economy!)

Yesterday Sáin was back in Urgent Care with yet another broken toe. How sad is it that both the ER at Children’s and Valley Medical Center’s Urgent Care clinic know us by name? The doctor said she probably broke it mid-week last week and that it’s healing nicely. He was concerned that she might’ve broken the foot because of all the swelling but it turned out to only be the toe.

And, probably the most important thing, HAPPY 75th BIRTHDAY, DAD! (pow, pow, pow, I got you!)

Emily Dickinson and Diabetes

I know, a strange pairing but Emily Dickinson best sums up how I feel now.

For someone with a known temper, I can deal fairly calmly with people spreading over-generalized, misinformation about diabetes. We've been forced to for 4 years.

I can deal fairly calmly with a lot of "best of intention" type things. At least people are trying, right?

What I am finding it really hard to deal with is my daughter being told by someone she really, really respects that there will probably never be a cure for diabetes. Especially since it was in a class setting during the time Sain is raising money for her cure!

Sain lives for a cure, she dreams of a cure, every prayer in our house ends with "and a cure for diabetes." Sure we have our days of doubts but her life depends on that cure and to have someone she idolizes tell her (and a group of other kids) that there won't be a cure is devastating.

So, to Emily Dickinson we go. This is how I feel right now:

It dropped so low in my regard
I heard it hit the ground,
And go to pieces on the stones
At the bottom of my mind;

Yet blamed the fate that fractured, less
Than I reviled myself
For entertaining plated wares
Upon my silver shelf.

-- Emily Dickinson

Our 2009 Beat the Bridge Video - enjoy!