Stupid diabetes!

Sáin is sick of diabetes. I could leave the post at that but it wouldn’t tell the whole story.

Saturday will be Sáin’s 3^rd diagnosis anniversary. This is the first year she’s really acknowledge the day. (It’s marked with a frowny face on her calendar.)

This is also the first year Sáin has fully understood what this disease is doing to her body. She has a better understanding of the medical side of this disease than I would like her to but Sáin is a smart little girl and she seemed to inherit my knack for research. On one hand I am proud of her researching ability (how many 8 year olds do you see reading medical journals?) but on the other hand I want to protect her as long as I can.

Give me the “Mommy, where do babies come from?” or “Mommy what are drugs?” or even the “Mommy what does it mean that the bad guys is a sex offender?” questions any day. I would much rather deal with those than the questions I’ve been getting of late. “Mommy, can you explain what brain scarring is?” and “How long would I be able to live on dialysis if my kidneys fail?”

In so many ways the last few weeks have been like the first weeks after diagnosis for Sáin. Sáin puts on the brave face for the public. She’s able to tell her story, fight for a cure, and appear to be a normal 8 year old girl but when the lights are out and she’s alone in her bed the fears and pain are overwhelming.

Countdowns and Soundtracks (an unusual combo)

Spring is a crazy time of year. I keep lists, calendars, post it note reminders and strangely cryptic notes written on my hands to keep it all straight. I though it might be fun to do a countdown… it’s amazing how quickly 2008 is flying!

• 7 days until the Sonics game where Sáin gets to be a JDRF Youth Ambassador and meet Adam Morrison
• 8 days until the Capital Food and Wine Festival
• 13 days until Amanda’s 18^th birthday (this makes me feel old!)
• 24 days until my dad’s birthday
• 44 days until Sáin’s first communion
• 50 days until the St. Martin’s Graduation (Yes, I graduated MANY years ago but this will be the first one I’ve been back too so I had to include it on my list.)
• 58 days until Beat the Bridge
• 59 days until we’re back in Toronto!!
• 76 days until Aidan turns 5
• 79 days until the Spaghetti Dinner
• 84 days until I officially have a 3^rd grader and a kindergartener

Okay, on to soundtracks. We are in the process of making a video for our Beat the Bridge team. Sáin was very specific about certain requirement. It had to be an upbeat song. (She did not want a depressing song.) One of the pictures had to be of her Godparents, Kate and John. And she didn’t want me to pick the song – her exact words were, “no Green Day, no Fratelli’s, no Social Distortion, nothing you would hear at a skate park.”

She chose “Kids of the Future” by the Jonas Brothers. It works very well into a diabetes video and, heck, Nick Jonas is diabetic which works even better. We’re almost done and I can’t wait to share it!

But doing the video made me think. What is my theme song? After much consideration I have to go with “When the Angels Sing” by Social Distortion. This song seems to sum me up pretty well and reflects a lot of my views on life. Who says Punk and Religion can’t mix?

(Besides, Mike Ness (the lead singer) could possibly be the reason I’m attracted to the bad boy – or it might just be genetic, right mom? :) )

Stress

I made two mistakes this morning. The first was looking at my Google Calendar and the second was taking the “life stress test” online. I know my life is crazy. I joke about having experienced 9 of the top 10 stressors in the last 2 years. But really, I don’t feel stressed. I rarely lash out at people that don’t deserve it, I have very few bad habits, I exercise, and I eat fairly well. I don’t truly feel like I should be the poster child for stress. My results from the Life Stress Test tell me otherwise:

• 0-149 Low susceptibility to stress-related illness

• 150-299 Medium susceptibility to stress-related illness.

• 300 and over High susceptibility to stress-related illness

I scored 710

Truthfully that number doesn’t bother me and neither does my Google calendar (which is synched to my phone which, as everyone knows, runs my life. I would actually be way more stressed without my Google calendar & phone combo.) What actually stresses me out is this: If I’m happy and non-stressed at 710 what would happen to me if I dropped below 300 or, God forbid, below 150? Would I die of boredom? Would I become one of those people who create drama and stress because that’s all they know?

(Some of my more recent posts may not appear so happy. Really, I am a happy person I just tend to expect too much of others and get disappointed too easily. I realize this but I’m not lowering my bar anytime soon. If they only knew how much more I expect of myself!! As for the picture – 2074 (the door next to Gabby’s) is where we used to live.)

memories

At the Beat the Bridge kick off lunch last week I got the opportunity to meet a family whose son was diagnosed the same day and at the same hospital as Sáin. We were talking about how the doctors sent their son down to Mary Bridge in Tacoma. It was odd. I knew there was another kid and I knew we got the last bed in Children’s that night but somehow I had always been able to gloss over this memory.

The doctors were conferencing outside our suite in the ER. This was just before they came in to tell us the diagnosis. Dr. Richards said, “Send them. This little girl isn’t stable enough to safely transport.”

For three years I’ve accepted the fact that Sáin was 12 hours from serious or fatal complications. But that’s all I saw it as – a fact. I had removed the emotion from it. It was a coping mechanism, I know, but now the phrase “not stable enough to safely transport” won’t leave my head. It’s haunting me.

What people don’t understand is Sáin was sick but not what any outside person would view as serious. She went to school the day of diagnosis and even attended a birthday party 2 days before. Diabetes is deceptive that way… it kills you from the inside out.

I know it’s a cliché but it really can all change in the blink of an eye.

As hard of an anniversary as it is, I am glad 05 April is our diagnosis anniversary and not the anniversary of something much worse.

Our Dickens-like life

This last week has been very Dickens-like. It’s been the best of times and the worst of times.

As for the best -- seeing your 8 year old stand in front of an audience of over 100 people telling her diabetes story is amazing. I am so proud of Sáin. I could never have done that at 8!

As for the worst – per my previous post, people are disappointing. I really wish they would think before they speak. I’ve come to the conclusion that the motto for 2^nd grade is “I wasn’t thinking.”

Back to the best – Beat the Bridge has officially kicked off. My letters will be sent off this week and our team is registered. We are doing a school team this tear which should be fun.

Back to the worst – I am sick but what is worse is Aidan is sick. I don’t think either one of us has really slept in days.

I will end with the best – I was reading through Sáin’s homework last night and here is Sáin’s take on her cultural heritage, “I’m Canadian. That means I’m nice. I’m Irish. That means I’m friendly. I’m French (France French not French-Canadian) and that means I like food. I will be a good date when I am older because I am nice, friendly and I like good food.”

Happy St. Patrick’s Day!

What do you do?

What do you do when someone hurts your child? I’ve learned over the years how to help Sáin cope with other kids being hurtful but I don’t know how to deal with adults hurting my child. It doesn’t matter if it wasn’t on purpose – adults should know better. We’re supposed to think before we speak and not ask a child who tells you upfront that her parents are not together “why did your dad marry your mom?” That is STUPID!

Sáin was so hurt and so confused as to why an adult would ask this. I don’t care if they are trying to be cute and make a fun little book that other parents will cherish for years – YOU HURT MY KID! Cute at the expense of my child’s well being is not cute even if it was done with no ill intent. And let me tell you, it’s not a cute question. It’s a loaded question and kids, even at 8 years old, realize that.

Sáin went to bed last night begging me to move back to Canada. I know Canada’s not perfect but she was right when, through her 8 year old tears, she was telling me how thoughtless and selfish American society has become. (Most Americans will tell you there is little difference between the two cultures – I would tell them to live both places, then we’ll talk.) I just wish I knew what to do!

If they only knew

Those who really know me know the great lengths I will go to in order to avoid conflict. Those who don’t know me as well might think otherwise.

The one thing I’ve noticed since Sáin’s diagnosis is how hurtful the phrase, “I wasn’t thinking” or “I hadn’t thought of that” can be.

Long before Sáin’s diagnosis I was the mom who went to PCC to get the gluten-free, nut free, dairy free, organic cookies that still tasted good even if I didn’t know of any nut/dairy/wheat allergies in Sáin’s class. I couldn’t bear the thought of any kid being excluded or made to feel different.

I figure this stems from always being a bit different myself. Usually I don’t mind being considered different; heck, most the time I view it as a compliment. (The best thing my mom ever taught me is that different is not wrong.) That said, I know the hurt of not fitting in and I know the loneliness of isolation all too well.

Naively I thought all parents were like me. I never expected to hear the aforementioned hurtful phrases so many times. “I wasn’t thinking when I added honey to the peanut butter sandwiches.” “I didn’t think 8 sugar cookies would really hurt her.” (Seriously, that was said to me.) “I hadn’t thought of how the juice, brownies and candy might impact Sáin.”

Other parents have been asked to let the teacher know before hand what snacks they were bringing in to class. (It’s actually in the school handbook that they are to do this anyway because of potential allergies.) Sáin’s teacher can then let me know and we can figure the carbs so Sáin can eat snack like everyone else.

Needless to say very few parents have complied. Sáin’s backpack comes home with squished brownies, broken cookies, etc. at least once a week. She tries to play it off as being no big deal but if you’ve felt the isolation of being the odd man out you can see the pain in her eyes.

The next time a parent says to me, “I wasn’t thinking” I’m going stop them there and say “no you weren’t, were you?”

I may not like conflict and God knows this will be viewed as such but the knot in my stomach from conflict is a heck of a lot easier to deal with then the broken heart you get seeing your kid singled out for something she has no control over.