If you have found this blog, saying Welcome does not really seem appropriate. I know you wish you weren't surfing the internet for diabetes. I felt the same.
A big part of me wishes I were not writing about diabetes, nor did I anticipate to become so opinionated or informed on the subject, but it happened. In 2010, my son was diagnosed with Type 1 Diabetes.
It wasn't really part of the plan… Correction - it was not part of the plan, but it happened. It is not always easy, but I think we are all doing okay, and I hope we continue to do so.
Why the Middle East? I happen to live in Dubai. I don't think that living in the Middle East makes mine or my son's diabetic experience any more unique or challenging than it does elsewhere in the developed world.
I hope you stick around, or read something you like. Feel free to comment and join the conversation, subscribe or follow this blog by liking the Facebook page Diapoint.
Please note: This blog does not give medical advice. I am opinionated, and I share my experiences, but the first rule of diabetes is to follow up with your doctor and/or nurse educator about your care, diagnosis or medication. If you do not have a medical practitioner that is helping you find your way through this crazy world, then do not give up until you find the right one.
Friday, January 22, 2016
In the earlier days, my son was always a pretty good eater. We like to eat food that is fresh and healthy, so why would I not feed my child the same?
If we ate out I would not order for him off the children's menu. They would often consist of the usual suspects - deep fried, fat, too much sugar and sometimes other ingredients that were not the most nourishing for an active, growing boy - which he was not a fan of at the time.
I remember the day that I cringed inside when we were out with friends and he wanted to forgo his favorite grilled protein and order from the children's menu like the other kids. Although small, this was one of those caretaker moments where I knew not to interfere and let him experiment. Type 1 or not, this is a fact of life. We still ate healthy at home, but I had to get used to seeing more of those kid's menus from time to time.
Fast forward a few years later. One spring day we were both home sick. Looking for something entertaining for both of us to watch, we found a food channel. My son loved it. He enjoyed shows like Master Chef and Chopped. Despite his young age, I was impressed at how good he understood who would prevail.
So when I came across Master Chef Junior with Gordon Ramsay I thought it might be interesting - and it definitely was. The things that the children on that show can cook would have many adult chefs walking away defeated.
Since we started binge watching all the earlier seasons to catch up, my son wants to cook and be more involved in his food choices than he did before. He is also more aware of the ingredients in what we are eating. It has taken our dialogue about food and his necessary understanding about ingredients and carb counting to a much deeper level. And, he loves Gordon Ramsay.
At an age where many children are infatuated by the kid's menu, he wants to also see the bigger menu to decide on his order. He knows what he likes, but he is more experimental and his selection process is much more sophisticated than it was before.
Another fast forward....
I recently received an email that Gordon Ramsay would be in town hosting some events at his restaurant the week before my son's 8th birthday. So of course I booked an early dinner at Bread Street Kitchen last week hoping he might get to meet his food hero.
As soon as I felt one of the tables nearby get a bit excited, I looked up and saw him across the restaurant. Rather than wait for him to make the rounds, my husband suggested that my son go to him before he got too busy.
Apologetically I interrupted his conversation and introduced him to Erin. He was very kind and genuine - used to being approached by strangers I am sure. Although their meeting was short, my son was incredibly excited to have met him and danced all the way back to the table. Full of Ramsay's signature beef wellington, he was over the moon excited.
It is quite a task to grow up diabetic and learn to manage all aspects of this disease. Type1 is not like Type2, and carb counting and knowing what you put into your body is critical for survival and longevity. It requires an almost hyper-awareness that those of us with functioning pancreases take for granted.
On that note, I would like to thank the team at Master Chef Junior, Gordon Ramsay and the other chefs on the show. While you are role models for many life lessons, you probably have not realized that you touch a whole other market segment. Thank you for facilitating my Type1's deeper awareness and interest in what is in his food, and the quality of food that he eats. You have helped me lay some of the foundation to raise a healthy Type1 Diabetic.
Friday, January 15, 2016
While my son and I were not big fans of the school, I also tell myself we have to be realistic. The other nurses that work there are very caring and well qualified, and ironically, her replacement worked at the nursery where my son went before, but her absence is felt.
In the first or second week into this change, there were a few bumps. Nothing too major, but one day a blood sugar read above 450 and one of the nurses told my son it was okay to eat his snack. She called me a few hours later because she couldn't understand why his blood sugar did not really go below 400 after eating. (For those asking why it was 400+ in the first place? Insertion site issue and there must have been no insulin delivery at breakfast).
I was not too pleased because this occurred just the day after my son defied another nurse's directives and lost the chance to go to his PE class as I wrote in this earlier blog post. And once again he tried to manipulate the situation because he wanted to eat with his friends. He was successful because the nurse caved to his emotional request. I know I shouldn't compare, but no way would the nurse that left do that. Not eating at such a high blood sugar is a basic concept in diabetes management.
When I was able to cool down and think more clearly after our phone call, I immediately proposed a meeting with all of the nurses (we are fortunate there are three) to hold a session to review his protocol for school. They welcomed the opportunity, and it also gave the new nurse a chance to review the protocol with me there. Despite what happens in his day to day care, I never forget that this is always a team effort and that is my recommended approach to these circumstances. It was a good meeting and we were able to discuss how to handle certain situations, and even do some planning about where we want him to be in his diabetes management in the future.
However, this post is not about that. I know, you read this far and you are wondering why? Stay with me...
The son of the nurse that changed schools is in my son's class and they are in Boy Scouts together. He is often the buddy that goes with my son for his blood sugar checks.
At yesterday's Boy Scout meeting, his father who is a great leader to the boys, informed me they knew the whole story. Much to my surprise, their son gives his mom regular updates on my son's health. She checks in with me from time to time to see how he is, but I never want her to worry. As much as I wanted to call her crying, begging her to come back when the above incident happened, I did not disclose the whole story because I wanted to wait until I saw her to tell her the whole thing.
Her son understands more about diabetes than I would have ever expected, and I am incredibly touched that he is also looking out for his classmate and friend. I am so deeply touched by the way this family is looking out for my son even when they are not there.
One night before bed we were talking about fears and I told him about guardian angels. We are so fortunate he has a few here on earth as well.
Wednesday, January 13, 2016
This morning as I savored the David Bowie tributes in my latest Facebook feed, someone posted a picture of a power ball ticket in one of the diabetic groups I follow. The caption read: I know 100% of the peeps in this group would trade the winnings for 1 thing.
So far over 200 people have liked it, and the comments just keep coming. I have never heard so many Facebook notifications come so fast.
This comment was not about getting likes or improving social data. This is the truth. If someone came to me and said here is 1.5 billion, or we can free your son of the burden of Type 1, there would be no contemplation.
I had a similar discussion with a good friend over dinner the other night. We were together when we learned that David Bowie died. A legend was lost. Both of us are fans so we went to dinner at a place that announced they would be playing Bowie that night. While listening to his music, we had a discussion about how life is so short and often unfair.
With all the fortune he made from his amazing talents, and all the access he probably had to the best care in the world; not enough money and resources could cure him of the disease that took him away from his family and doing what he loved.
We are always so busy managing diabetes that I do not really have time to think of a cure in this context. But this morning, that comment struck a chord and left me with no doubt.
Anyone with a chronic illness really just wants one thing.
Friday, January 8, 2016
The learning curve in the beginning is steep. And even though as a caretaker, I have learned a lot, I do not know everything. I think I am just scratching the surface.
My son will turn eight this month. This is a critical age when needs to start learning more responsibility for his diabetes. Of course we do not completely cut the rope, but we have been trying to teach him more over the last year in very small steps so he can enjoy being productive, independent and healthy when he is older.
A few months ago, during a presentation a physician asked me what I would do when my son reaches adolescence or the teenage years and rebels against his diabetes. My quick answer was to seek the help of one of the psychologists that was presenting after me.
But the reality is that sometimes I will have to let him learn by doing - even if this means "failing" or trial and error. Yes, I am still the caretaker, but there is a lot to be said for learning by doing. I do not like this when I know there is an easy fix.
And while I am not a control freak by nature, diabetes has pushed me there and has given me Obsessive Compulsive Disorder (OCD) tendencies. It is sometimes necessary and just comes as part of the job role.
Last week my son was running high before morning snack at school. We now know he needed a pump insertion site change, but at the time it had to be confirmed, and managed to come down. PE, his favorite class was coming up soon and if it didn't go down would not be able to participate. (We follow the rule to not do sports or hard activity at 250 or above).
His nurse advised him to only have the no carb part of his snack and then enjoy the coconut chocolate milk I included at a later time when his blood sugar stabilized. (Of course it had to be that day. The day I provide chocolate milk - which might be like once a month or in a blue moon!) Much to our surprise, my son rebelled and had the milk anyway. And so it begins.
He went back to the nurse before PE, and sure enough he was too high to go.
Punishment choices around a disease that is not your fault are very difficult. And I am using the term "punishment" very lightly here. How can I teach my child that his choices will effect his diabetes, which in turn will effect his life directly and indirectly? I am very cautious of not making him feel guilty or punish him, but I still have to creatively balance the lessons in some way that I hope will motivate him and not totally confuse and frustrate him.
As shocked as I was, it worked out well that his consequence was not being able to participate in something he really loves. That was enough to drive the message home last week. I was sorry for him because I know he loves it, but I also knew that this would be a better lesson than reason I could explain to him.
He's a smart kid. While he gets it, I know this won't be the last time, and it may be the first of many. I just secretly hope the stars are always aligned in this way where his lessons about healthy choices will have an impact in a safe context relevant to him at the age he is.
Saturday, January 2, 2016
We were at home as usual to enjoy the Burj Khalifa fireworks from our balcony with our neighbors. As the world knows, before midnight, a fire broke out at one of the landmark hotels in the area. It is now out, and we were relieved to learn that night that everyone was evacuated with only a few injuries.
One friend called it surreal. It was a difficult year for many, and closing the year out with a large fire followed by "the show must go on" celebrations was pretty surreal.
Diabetes is also like that. Even if you have a strong family history or genetic predisposition, it is always an unwelcome surprise. Managing it day to day also comes with its fair share of surprises. Sometimes more than we would care to deal with!
Even the small ones can make our diabetic world a little crazy. Most recently, my son accidentally set his pump language setting to Danish. Of course this happened as I was running late to go somewhere. Thank goodness for Google and online dictionaries!
As crazy as it is, and as tired as we are sometimes, we must prevail. And we do. The show must go on.
I'm not a big resolution person, but this year I am dedicating myself more to the diabetic community and helping diabetics in this region. It has started in small steps, but the time has come for bigger steps.
I am sure it will lend itself to many surprises, but I hope only good ones.
I wish you all a happy and healthy 2016 as you push forward to continue and don't let the surprises stop you.