Monday, May 3, 2010


I still seem to be going through a certain mourning. After 7 and a half years I should be over it right? That's what people keep telling me. That and it's not cancer. I really appreciate the thought and feel very lucky that it isn't cancer and that we get to keep Adele for now, but it still is Type 1 Diabetes and unless you're a fellow Type 1 gamer or you've lived in our shoes you have no idea what it's like.

Going through the day to day motions of constant monitoring, counting, calculating, bolusing, testing, guesstimating, not sleeping through the night... now seems somewhat normal. We've become very good at making it seem like we have everything under control at all times which is really not the case. Experienced Type 1 gamers are very good at creating the appearance of health and being normal. And no one really wants to hear about it all after a while. They just want to move on. For us, that old news isn't going away anytime soon. It's in our face 24/7.

So, we seem to have the day to day details dailed in for now. What about the future? I've been thinking about Adele's life when she grows up as a Type 1 diabetic. How will she deal with all of this extra day to day Type 1 work on top of everything else that she'll need to do like work, meeting deadlines, career, family...? At 22 years old, she'll already have 20 years of Type 1 Diabetes. Each and every day of Type 1 gaming takes it's toll on the player's health. You have an organ that no longer works, so the game consists of trying your best to do the job that the organ (pancreas) once did. Artificial organ functionality is never as good as the real thing. Each minute that blood sugar is out of range brings us one step closer to complications. Insulin, along with all of the latest available technology, is not a cure, it's life-support.

We have never really sat Adele down and explained to her the possible complications that she may face in her future. But, she's caught on that playing the Type 1 game is not just about needles. She seems to have figured out that it goes beyond that. She really wants a family when she grows up and asked us the other week if having Diabetes could prevent her from having children. Then, as she was testing her blood sugar a few days later she told me that she's sometimes afraid that she won't have any blood left in her fingers and that she won't be able to test. This week she told me she is sometimes afraid that she'll go really low and will die. We reassure her when she has thoughts and questions like these, but she surely still feels our worry. But, she's a kid, so a few minutes later she's already forgotten about the whole thing and is busy thinking about what she'd like to play next. She has presence. She lives in the moment. She lives in the now. Having observed this, I challenged myself to be more like her, to try to live more in the moment. It's strange, but this seemingly simple decision prompted an entire shift in my mood. Instead of my mindset being 10+ years in the future or a few years in the past, I concentrated on NOW. That night, I tested Adele while she was sleeping and her blood glucose was good. I knew that for now she was okay. I took a few minutes to cherish and take in that feeling of okayness. I appreciated the moment. When you think about it, the now is the only thing that is a sure thing. The nature of the Type 1 game makes it very difficult to live in the now since the objective is to look at where the numbers are, have been and then try to predict where they're going. Not exactly living in the moment... But I think that it's still important to be conscious of exactly where we're at and to try to maximize our time in the Now dimension and be more at peace.

So that's my new challenge, to develop a new habit of 'just being' more often... I invite you to give it a try as well... and let me know how it works out.


Amy said...

Great post and SO true. Thanks for some words that I needed to hear today.

sisiay said...

Ultimately, you're right, it's the only way to live. That said, in order for it work out, you have to put in the work that you've done to be able trust the now. Just as worrying about every little detail and running over the past and future in your mind is too much to handle (and often counter productive), without having checked your numbers, learned trends/behaviors etc, it's very hard to relax. So I think you have to lay some ground work, but then trust in your efforts, knowing that you've done the best you can.

Siobhan said...

i grew up from the age of 2 with type one (i'm now 22), and i totally agree - whilst there is always the space for worrying about the future, as a type one kid, sometimes you just want to forget about that stuff and just think about now. i grew up knowing that poor control could lead to complications, but i never had it shoved down my throat or anything - my parents were wonderful (as you are!) and just adapted our lives to living with type one.

Meri said...

I have a lot of mottos, but one I use quite often is "one day at a time." It has helped me get through the hardest of times. I'm with you Mike...Live in the moment, because we will miss out on a lot if we do.

Anne said...

I want to say that I really enjoy reading your blog. You write extremely well - which unfortunately is rather rare on the Internet - and you describe what you’re living in a way that makes things interesting and palpable to the rest of us. Other people with children living with Type 1 Diabetes must gain great comfort knowing that someone else feels what they feel when they read you.

People try to make things better by saying things like “at least it’s not cancer”. I’m sure you are glad it’s not cancer, however if it was, chances are you would have it beaten seven and a half years later.

I live with Rheumatoid arthritis. It means one shot a week (and thankfully not several a day) and other oral medications, almost constant pain with regular bouts of extreme fatigue. No it’s not cancer, but I have been living with it for 7 years, and it will almost certainly never go away. Every year it’s a little bit worse, and I live in fear that the pain will get unmanageable, that the medications will stop working, that the disease -which like Type 1 is an autoimmune disorder - will get tired of attacking my joints and go after much more crucial organs (liver, kidneys, lungs or heart) and that I will have to eventually stop working.

You can tell yourself every day that at least it’s not something worse, but you also live every day with what it is, hence the long-term mourning. I was an athlete; I skated, danced, ran and swam. Now I sometimes need help getting up off the couch or taking a heavy coat off a hanger. Living in the moment is a good idea. I live every single moment when the pain ebbs and I have the energy to move; the difference is so staggering, I can’t help it. ☺

Hats off to you, your wife and your daughter. You are heroes and once in a while, you have the right to mourn.

Jr's dad said...

Great post Mike! I know what you mean. Jonathan has talked about dying and all sorts of horrible things.. .things that a kid shouldn't have to worry about, and it's painful to hear that sweet voice carry word of an awful possibility.

I think about years from now and what could go wrong and before his Dx and how things should have been, but you're right - we're not there yet/anymore. There is peace in now and when there isn't we quickly work to bring it back.

Most people don't get it, I didn't get it before. But now that it is with us we have to decide how it will impact us. We will be haunted, but we will live and celebrate too. This is the new normal we share yet all experience a little differently, but we are all in it together.

alix said...

yes, we must cherish the'right now'
As parents of T1, our minds are constantly running.. on the what if's, is their b/g good right now, what do I feed them, etc... so often we are out of the present moment and that moment is all we have. Sure we need to plan, reflect and evaluate, but remember to take the time 'now'.
Tyler being 14, knows all that can go wrong. How hard it must be for him, everyday knowing what can go wrong. No child should have to live their life like this, ever!
Teaching him to continue being in the now is very important to me. As well as giving him the tools to take great care of himself....
Each day is a celebration!
thanks for the great post Mike.

Hallie said...

Awesome post!

It's hard to hear things like "at least it's not...." I don't think people know how much that hurts - how it's like making diabetes seem insignificant.

I do think we do such a good job of pretending that our lives are normal and healthy that others just don't get it. They can't see it. And they couldnt imagine it in their wildest dreams....

Avery doesnt ask questions...yet. She has no concept of future or even life and death. But I know she picks up on our worry. I know she knows that something is different about her. The questions will come, I'm sure. Proabably sooner rather than later. I'm not looking forward to it. Right now, in her world, diabetes is not fun. But so much of her world is fairies and princesses and singing and dancing. Diabetes doesnt encroach much. Yet.

I do know that diabetes has helped me take in the small things, the small beauties, the good days and hang on to those things.

Great perspective! Thanks for sharing!

connie said...

This was such a wonderful post and something that I really needed to read tonight. I spend a lot of time worrying about the future of my girls and how every number will somehow impact their health years down the road.

My girls were 2 years old and 18 months old at the time of their dx, sometimes I drive myself mad with the what-ifs. I have been trying to live in the moment and really enjoy each day with my girls, this was just another reminder for me of how important that is.

Thank you for sharing this!

Nicole said...

great post!!

Yvette said...

I can't believe what a close connection I can feel to a family I have never met before just from reading one post on your blog.

I know what you mean about making it seem like we have everything under control. My best friend has told me before that people have said to her that it doesn't seem like diabetes really effects our lives. I'm still not sure if that is a compliment or just some really non observant people. My best friend knows the truth. Diabetes effect every second of every day of my life and will forever. Someday my daughter will feel this to and that bothers me the most. like your daughter, right now she lives in the moment and I hope that innocence lasts a long time.


Rebeca Placo said...

Love your "gaming" analogy. It works beautifully.

Your daughter seems like a trooper. I'm 26 and I've had diabetes for 6 years. With parents like you guys raising her, Adele's going to be a great gamer. As she already is, I'm sure.

Living in the moment is hard, for sure. Very soon Adele will become more and more involved in her own care and monitoring and you'll watch her bloom from a girl to a strong young lady before your very eyes. And no doubt, she will look back on her childhood and KNOW that she was loved very, very much!

Let her know, a fellow "gamer" is on her second pregnancy and things are great. She can certainly grow up and have a family and children and it'll be great. I am sure blessed in that way as I'm sure she will also be. One day her prince charming will come along that will not only love her unconditionally but also be her biggest supporter and he'll always take care of her. Just have a read through the other T1 gamers out there who are in their twenties or early thirties, married and with kids. Just to maybe get a glimpse of what your daughter's life will be like.

I've only been in the blog world for about a month or so and I CANNOT BELIEVE how many "gamers" are out there living MY LIFE. Having the same struggles and same worries. Keep blogging - it really helps... somehow we are all impacting one another and it's so great!

Hang in there. Seems like all three of you are doing great!

Daniel said...

Not only is Adele going to be fine, she's going to be awesome, and that is a DIRECT result of her wonderful, caring, supportive parents. You guys are doing a great job.
Thanks, Adele is beautiful and be proud of yourselves.

shannon said...

I just found your blog. Thanks so much for this post, it really beings home the importance of right Now.