To selfish or not or U-Turn

I want to be selfish. Really, I do. Not that I am not already, but I think I could brush up on being selfish for real. At least until I don't feel like it anymore.
So, I'm thinking the first step is (and take a seat, this is shocking!) to think of myself for once. Amazing thought, isn't it?
I have not been good to myself. Rather, I have neglected my needs and my wants for several years now. I am a problem-solver, not in the mathematical way (I'm hopeless there, but do well-enough with diabetes related stuff). I solve problems all the time, give feedback all the time when asked, come up with solutions, answers, figure out the why and the how.
Even as a kid, I would make everything right. Why? Because it was expected and because I was like a little hero, coming in to save the day.

I refuse to wear the cape. It doesn't suit me. It's too tight (later post) and I don't like the green. Burgundy or deep orange suite me better. Earth tones too. And flowers. I want it to look like Little-Red Riding Hood's cloak, but my size.

Anyway, forget about the cape. I DON'T WANT IT ANYMORE. (I have to repeat that. Self-sublimination, if such a word exists).

So, where do I start on my selfish journey?
Hmmm......
???????
I have no idea where to start. Maybe it's like writing. You either can or you can't.
This is very symbolic. Me, not being able to find my direction. Ha!
I'll just drive around in the meantime.

Oh, and I also want attitude. Not sure which kind yet, but a good one.

PS - Don't be surprised if I don't write too much about life in the D lane from now on. It's normal. I have made a U-turn. Time to get my life back...

...wherever it is.

Lady Gaga

Whaaaaat?

I know.

Out of nowhere comes an oddly-dressed singer and makes my mind go crazy with Po-po-po-poker face. Can't get the darn song out of my head. Not that you would care ("you" being you out there who may read this blog - I wonder who does anyway?), but thought I'd share.

Anyway, Lady Gaga has been invading my brain with her deep voice and catchy beats. That's the problem. The beats ARE catchy. Like that Kylie Minogue song "Can't get you out of my head" (hope I got the title right). I wake up with Lady Gaga and go to sleep with her. Strictly platonic, I promise.

"Poker Face". Cooking to it is quite fun actually. And I don't like cooking...because I suck at it. Cleaning...well, hate that so much than even Lady Gaga can't help.

So, what's the point of sharing this epitome of useless info??

Well, I have other things on my mind than just Type 1 Diabetes.

Nuff said.

Hope for a Cure

Hope is a word which makes me think twice - I can hope forever or I can choose not to hope, and lose that human ability to dream. That is what hope is, isn't it? To dream. And dreaming makes life so much better, because some dreams do come true, as the old adage says.

My hope, my dream is largely driven by one person - my son with Type 1 Diabetes. I hope for a cure for his disease, as I hope for a cure for all children like him.

And one person is continuously lighting the fire to keep that hope alive - Dr. Denise Faustman.

Please take a look at this incredible website:

http://helpcurechildhooddiabetes.org/Home.html

Keep the hope alive and help make a dream come true.

Taking a vacation

Well, finally the time has come when I can take some time off, chill, relax, sit back...I am going on vacation with my family in a couple of days.

Type 1 Diabetes is also coming along. That's how it is. You can't just leave it at home or put it at a Diabetes Hotel while you chill, relax, sit back.

It goes where you go. It has to. It lives inside my child's body. It feels at home there, I guess. But it's a very unwelcome guest.

Anyway, I am happy to go somewhere and see new places and people. I am also in a very odd way interested to know what Diabetes will surprise us with. But guess what? I am so ready!

See you when I get back!

Update

Well, here's what happened at the endo appointment.

I cried. A lot.

Currently dusting myself off.

Nervous Wreck

Seeing the endocrinologist (endo) tomorrow! Need I say more?

I am soooo nervous...and guilty. I've not been a very good "student" lately. Unfortunately I can't influence the "teacher" (endo) with an apple. Sigh!

I'm going through my thoughts on how to approach the appointment, and all I can come up with, besides bawling like a baby, is to keep it real.

I'm going through burn-out in a way. Haven't been logging consistently. Haven't been adjusting insulin needs fast enough. Haven't been strict enough. I feel so darn guilty about all this.

Wish me luck! Well, not really...wish me to have the guts to keep it real...and not cry.

It could be worse...

This is what I often hear, as I am sure do many other parents of a child who has Type 1 Diabetes. Not what we need to hear. Trust me. Let me tell you why.

The feelings we have, as parents, are real. They need to be validated.
When someone tells us "It could be worse." it makes those feelings less important.

So you may say "Give me a break. It could be worse, because it really could be worse. So, think positive, and move on. Don't wallow in self-pity."

I know that. I am aware of that. But you haven't validated my feelings at all.
Is it not ok for me to have those feelings? Is it not ok for me to sometimes feel overwhelmed? Am I supposed to always be on the top of the world? No. We're just human after all. Aren't you?

So, next time someone tells you something and your first instinct is to say "It could be worse.", think twice and just say "It's ok. I understand."

We all know it could be worse. No need to remind us of that.

We just need a listening ear sometimes.

Thanks for reading.

Viewing Point

Kids are amazing.

Get this - my kid has a pen-pal, another kid the same age, diagnosed the same year (different months though). So we received the first letter today. Very exciting stuff!

So you would think my kid would be totally amazed at knowing that somewhere in this planet of ours, there is another kid who has Type 1 Diabetes just like him, and has to go through infusion set site changes, just like him, and whose blood glucose level has to be tested several times a day and night), just like him. Right? I thought he would be very excited about that.

Well, turns out my son just wanted to know how his pen-pal managed to send the letter. He asked if there was a special machine that takes the letters and makes them appear over here.

So I explained about airplanes and the postal service.

So now, my kid is anxious to get a letter ready to post, so I can tell him again how the postal service works.

Imagine that...D is not first and foremost in his head! Guess there's a lesson in there, isn't there?

The Other Side

Gosh, I have been so uninspired to write lately. Blogger's Block, I guess! So, I'll be randomly writing about whatever. There you go! Randomness...the other side of life.

This week has been...hmmm...annoying?? Good word. Annoying it is. I call it "bad hair week", "Monday's suck every day week". I'm glad it's over.

I was not in the best of moods, and I guess that attracted all the rude people to me, just to push my annoyance buttons a little bit more. And they succeeded. They were everywhere. Like flies. I'll have to try covering up further annoyance with a smile next time.

One very positive thing did happen. My kid with Type 1 Diabetes went on an all-day field-trip, and he had a blast. Of course, I was in anxiety-mode, as every parent of a kid with this disease has the right to be. But he had fun, the blood glucose levels were on their best behaviour, and I survived. So, 1 huge point for this crappy week.

I miss my sleep. It has become such an exotic word. SLEEP! Look at it. Read it. Let it roll off your tongue slowly. Beautiful, hey? I agree! Such a sweet and inviting word. Gosh, how I wish to have a pyjama day...for a whole week! Now THAT would be a great week. Sleep, get up late, mope around in my pjs, watch non-intellectual programs, read the latest gossip, then SLEEP again.

What else in this randomness of thoughts?? Hmmm, guess that's all really. Just thought I would blog (is this an official verb??) a bit, in case anyone missed me.

Til next time, hopefully soon.

A special place

Just a few words of gratitude to all those who have made me feel less alone in this journey dealing with my son's disease.

Thank you so much! Although I have not met any of you yet in person, you all hold a special place in my heart.

This is where they all "live":

http://www.childrenwithdiabetes.com/

Time to get humble

It's been a hard time emotionally.
Today was the regular apppointment to see the endocrinologist (endo. for short).
The usual stuff is done - checking weight, height and the HbA1c (A1c for short) (google it if you want).
Well the A1c went up, and that put a real damper on my spirits. I knew it would be higher than last time, but was hoping it wouldn't. Sigh...

So, after sulking for a couple of hours about how I hate this disease, and how much work it entails, I put back my fighting gear, asked for help from a forum board I visit often (ok, I practically live there) and am ready to fight this monster again.

This is what is so interesting about Type 1 Diabetes - you think you know, then the disease forces you to accept you may not know it all. So, you're constantly developing new fighting strategies, new ways to keep the enemy at bay.

And in this process, learning how human we all are and that sometimes we need to back down from our noble steed, let go of our previous war gear, and find new battling methods.

This, fully aware that what has worked may not next time, and what you think may work, may actually backfire.

Humility mixed with boldness - what a paradox really!

Of Air and Water

I am listening to a Best of CD of Bon Jovi. It is playing in the background as I type.
Funny thing is it takes me back to years ago. I had the biggest crush on the singer, hehe...I think a lot of us did.
What the heck does this have to do with Type 1 Diabetes? NOTHING! A BIG FAT NOTHING!
I had forgotten that there were memory drawers of me in my brain. Gosh, they have been left closed for so long.

You know, since my son's diagnosis, I have lost...no, that's not the right word...I have drowned...yes, perfect word...I have drowned myself in Type 1 Diabetes. Everywhere in the house, books on Type 1, notes, even my favorites list on the laptop is 95% Type 1 Diabetes related. I kid you not. And this since October 2006, diagnosis time.

I have watched myself slowly swim back up...very slowly. I am not a good swimmer **wink**.

Everytime I would reach the surface, I would dive down again...the waters of Type 1 Diabetes feeling so strangely "safe". This is what my life has been - Type 1 Diabetes EVERYWHERE! Call me obsessed, call me whatever you want, but I breathed, smelled, tasted Type 1 every single day since October 2006. I read Type 1, I watched Type 1, I googled, yahooed, msned Type 1, I shared Type 1 with anyone willing to listen...and even with those who couldn't care less. Type 1 submerged me.

I have come back up for air for a little bit longer this time. It feels so strange...I am actually tapping my foot to the beat. Is this ok, for me to take off my Type 1 swimsuit once in a while, hang it to dry and catch some rays? Please tell me it's ok...because it feels really nice.

Why don't I come up more often for air? It's so unlike me. I need my little niche, you know. But I guess when you are taken over by such overwhelming guilt, you slowly start to sink...and if you're not careful, you drown.

Guess I am not such a bad swimmer after all! I have been able to swim up and catch a few minutes of wonderful air.

Breathe!

A Moment in Time

I was looking at a photo album today. There were the usual photos of my kids, at the park, at parties.
Then there was THE photo. Taken 3 days before my oldest was diagnosed with Type 1 Diabetes.

Just remembered I have not explained what Type 1 Diabetes is. But I don't think I will explain it. Plenty on internet about it. But I will say it has nothing to do with how badly you eat, nothing. I will come back to this point on another post.

Anyway, I came across THE photo. My throat becomes so tight when I see it because it is the fullness of reality staring back at me.

My son is smiling in that photo. Lovely, lovely smile. Wonderful kid!

But the eyes are so sunken in and he is so thin...how did I not see that?! How?! Can you say GUILT? That's how I still feel when I see this photo. I know I shouldn't feel guilty, but I do.
Nothing I could have done would have stopped the disease.

But, I wonder in how much suffering my boy's little body was. I wonder how he was feeling. And that hurts...to imagine he was in pain, and couldn't voice it...to imagine I didn't see it. And I feel guilty about that.

To make myself feel better I compare that photo to the ones after he was receiving insulin. He looks so healthy in the latter ones.

Do I destroy that photo? Maybe it would be better...but then it would be letting go of that wonderful smile...and I can't do that.

KEEPING THE FAITH

I'll start off with saying that I am not a religious person. I do not go to mass, I do not pray. I have the utmost respect for those who follow an organized religion. I have the deepest respect for those who don't try to force their beliefs upon me.
I'll also start off with saying that I have a vision of life, of its meaning, of the greater good, of the universe. That is my "faith" if you can call it that.

Anyway, I recently read somewhere, but forgot where, someone mentioning how could people raising children with a disease go about their lives without faith, without religion.

I was shocked to be honest. Does one need faith or religion to rear children with special needs? I don't think so. I think we need to be caring, to have patience, to have fortitude, perserverance, endurance, selflessness (and selfishness sometimes), along with many other qualities. But faith?

After my initial shock was over, I pondered...do I really need faith, especially with a child with Type 1 diabetes?

I guess it depends on my own definition of faith. For me faith is believing. And I believe.

I believe life can be good.
I believe I can and will do my best.
I believe that my son is like any other child.
I believe that things happen for a reason.

Therefore

I have faith
My own way.

Atlas and me

Well, a little detour from my story. This time it's about how tired I am. Boring stuff I know. You don't have to read it. But I have to write it...

I am tired.
Over 2 years of non-stop testing of blood sugars, of figuring out why sometimes they are high, or low.
Of reading anything and everything, trying to understand.
Of worrying, constantly.
Of feeling like Atlas, the weight of the world on my shoulders.
It's too much.

Today is one of those days. When my shoulders can't bear the weight anymore.
I don't show it though, my ever present good humour stopping me from collapsing.
Then there are my sons. I can't fall ever. Not now anyway. They are too young.
Will I fall one day and show how tired I am, how utterly exhausted I have become?
Most likely not, for days like this, when I am faced with my humanness, are rare.

I am not being arrogant when I say this. I think any parent of a child with a disease probably feels like they can take on anything anytime. But they also have their down days. The days when the superhero cape comes off, the masks are withdrawn and they look at themselves in the mirror.

I do not like what is staring back at me in the mirror. It's the face of reality. I can't escape it ever.
Nor do I want to escape it.

Deep down I know this is how life is. Good and bad. Take it or leave it. I took it and am carrying it on my shoulders. And I do not regret it. I know I am strong. I know I can do it.

But today I am tired. I wish someone could take over all the testing, and all the worrying, and all the figuring out why and how. Just for one day.

Have you read so far? Thank you!