Learning to Live with Diabetes
I didn't expect to be so deeply effected when I spoke to a group of D Parents.
Way back in January I received an email from a lovely woman named Carla who is a D Mom, an advocate and a volunteer for a charity called Learning to Live that helps children with diabetes. Thing is where Carla lives, they call the charity Aprendiendo a Vivir because it's in the Dominican Republic.
Carla's email asks if I would come and give a speech at an event they were having that concludes with a 10k. My short answer was, "I'd be honored, but don't speak a word of Spanish and I don't run".
Carla didn't care, she said they would find me a translator and I could walk the 10k. I found apprehensive about traveling to a place where I would mostly be mute, invited by a stranger who found me through my book and blog – but something told me that I should go, so that's just what I did.
I thought that I was prepared to meet children who have limited access to diabetes care and supplies. But when I arrived on the island and began to talk to the people who run the charity, I quickly realized that I didn't - though I thought that I did - have an appreciation for what having diabetes outside of America meant.
Dominicans who do not have private insurance or the means to provide for themselves rely on local hospitals for their supplies. It is not uncommon for a person to receive thirty test strips per month – one a day. That concept overtook me and I struggled to imagine how I would best utilize one test strip a day, keeping Arden healthy with only one strip seemed impossible.
I heard stories about children dying very young from completely ignored diabetes, families that weren't educated about the diseases but trying and others who were culturally predisposed to accept that life with diabetes meant that it would be greatly shortened. After seeing first-hand what having diabetes in the Dominican Republic was truly like and hearing about families, some who existed on the equivalent of one thousand dollars annually; I returned to my room on the first evening of my visit and threw away my speech. I'm still not sure if anything I said the next day was helpful, but I tried my best to relate our experiences in a way that would make sense to the parents listening.
Aprendiendo a Vivir was founded by a young man named José who happened to be studying in America when he diagnosed with type I, when he returned home and saw the difference between the education, tools and understanding that he was given in the U.S. and what was available to his fellow countryman; he sprung into action and created a network that supports children with diabetes in a way that left me awe inspired.
I was so concerned when I stepped onto the stage that what I was about to say wouldn't translate both in language and spirit but when I finished speaking a young mother brought her little girl to me so she could show me her insulin pump. She was very proud of her daughter's pump because their aren't many people living on D.R. that can afford one. I sat down on the edge of the stage and found a picture of Arden with her pump to share, when I showed the little girl Arden's picture she just smiled and hugged me.
A moment later as I walked through the crowd a mother stopped me to say thank you for mentioning that diabetes doesn't make you a broken person. She confided in me that her grown son's father is not accepting of his diabetes because he see's him as damaged. She added that it made her happy to see a father supporting his child with diabetes. I didn't quite know how to respond, so I hugged her just as the little girl had hugged me. We both cried.
As it turns out, it didn't matter that I don't speak any Spanish.
More images from the event can be found in my Image Gallery here.
*I misspoke during the address, Kris Freeman is a 4 time Olympian, not a 4 time gold medalist.
Thankfully
Thankfully, it is not difficult for me to answer the question, "What are you thankful for?". A great many of us will answer that question today with words like 'good health', 'family' and 'a roof over our heads', but what of those who struggle to make even these meager claims? In my heart I know that today is for those souls, the ones who are not be able to answer such a question with warmth, joy and hope in their voices. Today, I'll think of them as I count my many good fortunes.
I am grateful for insulin and the people who continue to work on ways to make it better
A family that buys me a silly hat to wear when I make them special meals
My wife's strength and patients
My son's heart, my daughter's spirit
A warm home
My mother, brothers and extended family
Health, happiness and the staggeringly amazing diabetes community
I am thankful that the people who make up Spry Publishing let me write books... their kindness rescued my love for thinking
I'm thankful for all of you and I wonder if you understand how much helping you... helps me
Of all the things that I listed and all of the things that I didn't but could have, if you made me choose just one. If I had to tell you that I was thankful for one thing and that my gratitude meant that the rest of it would magically disappear, I'd choose insulin. None of these things would exist in my life if there were no insulin.
Without insulin, I'd be too sad to think, love, find friends or care about the world around me. Insulin is everything, it's what I am grateful and thankful for. In it's absences, I would be the one of the people who struggle today to find a warm word of thanks.
Think of those people today. May you share this day, and each that follows with your family, in a way that brings honor to those who weren't lucky enough to live in a time when their "insulin" existed.
Have a very happy Thanksgiving!
Best,
Scott
Pooh. Gilly. Bear.
Arden has been fighting off a cold for the last week and her BGs have been low overnight as a consequence. We've used up more juice boxes this week then in a literal year of overnights prior. I'm beginning to drag a little bit from the experience but Arden, despite her distaste for drinking juice when she isn't thirsty, is taking it all in stride.
I can't seem to avoid these lows, I've tried everything. By the time this story happened I had resolved myself to the fact that we would be dealing with low overnight BGs until her cold passes.
But anyway... last Friday we went to the movies and saw Monsters, Inc. Many hours after the movie ended in the wee hours of the morning, Arden's CGM alarmed and woke me. I checked her DexCom receiver and saw that her BG had fallen well below the low threshold, so I tested. Arden needed to drink a juice.
I was able to wake Arden with very little issue and she began to drink. I held my left hand behind her back at one point because she was having trouble holding herself up. When she finished the juice she handed me the empty box and said, "Thanks poohgully bear". Her words seemed without meaning, I was startled by her jumbled communication. Perhaps her low blood glucose was more severe then the Dex and meter indicated. I was worried that she was becoming incoherent. I asked her, "what did you just say?" and without missing a beat, she smiled and said again, "Thanks poohgully bear". I responded this time, "Arden, I'm sorry but I don't know what poohgully bear means. It sounds to me like you are saying, Pooh Gilly Bear".
"No, not poohgully bear", she said. Then she spoke the words again only slower saying, "Poohgully bear". In this instant Arden and I had slipped into an Abbot and Costello routine. I was sitting on her bedside saying, "pooh gilly bear" and she was responding with words that sounded, to me, exactly like what I was saying. Finally I realized that everything else about our conversation, sans poohgully bear, was very coherent so I stopped worrying that her BG was much lower then indicated. We agreed that I wasn't going to understand her message and we said goodnight. I told ther that she could go to sleep, adding, "I'll be back to check on you in about fifeteen minutes".
Before I walked out, I couldn't help it, I asked one last time "poohgully bear?". Her little voice answered back in the darkness, this time very, very slowly, "pooh gully bear". I laughed and said, "Arden I'm hearing pooh and bear but I just can't make out the middle word... are you saying gilly?" She answered only, "Never mind" and then giggled. I left the room expecting to never know.
Her BG leveled out some time around 3 am...
The next morning Arden and I were making breakfast together while Cole and Kelly slept in. I brought up our conversation because I wanted to know, even though I imagined that she wouldn't remember. "Any idea what 'thanks poohgully bear' means" I asked.
Then Arden said this, "Remember last night we saw Monsters, Inc., it's what Celia calls Mike... poohgully bear".
I laughed so hard that I thought I was going to break a rib and then replied, "do you mean Googley Bear?".
"Oh, is that what she calls him... sounded like Poohgully Bear to me".
We smiled at each other and then I couldn't help but to walk over and gave her a big hug.
Most low BG stories aren't any fun, but this one, this one needed to be shared.
Click the image to hear Celia
Update
on 2013-03-19 01:46 by Scott Benner
My new book, "Life Is Short, Laundry Is Eternal' is available now - Amazon/Kindle - Barnes&Noble/Nook
Update
on 2013-03-19 01:46 by Scott Benner
My new book, "Life Is Short, Laundry Is Eternal' is available now - Amazon/Kindle - Barnes&Noble/Nook
Feverish thoughts of love and life
Maybe it was the fever, but being sick this week made me think about my family in an oddly morbid, yet thoughtful way. I was on the second floor of our house trying to weather the storm of what ever virus had grabbed a hold of me. My back hurt, my stomach was in one giant knot, I was feverish and for a number of hours had a genuine concern that I was more then just sick. At the height of my worry my children began to arrive home from school. Kelly worked from home this day so she was on the main floor to greet them and take care of the afternoons events. I was trying to find a comfortable position and get the sleep that I hoped would drive away all of these terrible aches, pains and concerns when I heard Cole come home from school.
I have these great conversations with my son Cole each day after school. He walks in through our garage, most days full of energy, then we talk about his day. He almost always tells me about some silly thing that he and his friends did, we go over test and quiz results and there is always a moment when we hug. Frequently we take the talk outside, throw a baseball around for a few minutes, and wait for Arden to get home. It's one of my pure joys as a stay-at-home dad. On this day, my sick day, Cole came in and found that I wasn't there. I don't get sick often so it was a bit of a surprise for him to hear from Kelly that I was upstairs in bed. He came up to check on me, but I was too ill to talk. When he returned to the first floor, I listened as he and Kelly had the conversation that we have together each day. I loved that Kelly was getting a chance to enjoy one of these moments with Cole. I heard him find a snack, get out his books, and begin his homework just as he does everyday. A little while later Arden and I made the last adjustments to her BG via text message, and I sent Kelly a note telling her that Arden would be home soon, where I thought her BG would be when she arrived, and that I was done for the day managing diabetes.
Arden soon arrived home, all of the noises and movement that I experience each day as a stay-at-home dad began to fill the air. I don't know why, and as I said maybe it was the fever, but I started imagining their lives without me. I guess I felt pretty sick, because I was pondering my mortality on a serious level.
I've been the type of person throughout my life that thinks scenarios out to their end. What would I do if the house was on fire? How would I react if someone grabbed my child in a store? I have a contingency plan for all kinds of reasonable, yet unlikely moments. Here is a true, yet embarrassing admission, now this is sharing... I know what I'd ask a genie should one pop out of a lamp. I just wouldn't want to waste a wish, ya know?
Anyway, I spent the next few minutes listening closely to my family, and even though I already have a huge heart full of gratitude for what they mean to me; this moment took that feeling to a new, and higher level. I thought about throwing the ball with Cole, and how sad it was to consider never hearing one of his stories again. I wondered how Kelly would handle the afternoons with me not there? Who would help Arden with her diabetes when she was at work? I didn't realize that I would miss making them dinner or breaking up one of the ridiculous disagreements that they seem to have around 5:30 everyday.
My family means everything to me. I am sure they would eventually move on if I was gone, but it wasn't the idea of leaving them that made me sad, I mean it did but I was most struck by how difficult it was to consider not having the conscious notion of them ever again. I couldn't believe how much listening to them go about their day filled me with love and joy. It was obviously the concern in my mind about my health that led my thoughts to something unpleasant, but I am glad that I considered them. Life is so short, and it's easy to take the little stuff for granted.
My fever has passed, and I'm no longer worried that I have something significantly wrong with my health. I decided to tell you this story in the hopes that you may take a few minutes and listen from another room to your family. Little moments and the pauses in between, that's where life and love live. We could all use a reminder of that now and then, this was mine.