I've Never Been Hit in the Face with a Shovel
This story takes place a few days after Arden's diagnosis in the summer of 2006...
If you've ever read our diagnosis story you know that Arden was diagnosed during a family vacation, just a few weeks after her second birthday.
With the exception of one day, Arden spent that 'vacation' sick and waiting for us to figure out that she needed medical attention or in the hospital - she was released on a Friday, the day before we were scheduled to make the long drive home.
This was a day full of firsts for us. It was the first time that we gave Arden an injection in a restaurant, first time Kelly hung over the front seat to test a BG, first time I worried about driving with Arden and the first time I cried standing next to my car. It was also the first time I thought my son had cancer (he didn't and doesn't - keep reading).
It was a few hours after we ate at a roadside restaurant, the people at the hospital said we should retest after meals and so I drove as Kelly contorted herself and performed a finger stick from the front seat. The meter revealed that Arden required insulin. Of course we didn't know what the hell we were doing and had packed the insulin in the back of our SUV, I pulled onto the median and got out of the car to retrieve it.
I closed my door and watched Arden in her car seat as the dome light faded to black. Traffic was racing by us with such force and volume that I felt unsafe, this was;t something I would have done prior to diabetes. It was so dark and I couldn't see where I was walking, my eyes began to fill up with tears as I made my way to the rear hatch. A moment later was the first time that I drew a syringe outdoors, or in the dark for that matter. I had to lean over my son Cole to get to Arden's thigh because her door was on the traffic side of my car. I remember that feeling wrong to do.
Life seemed about as unfair as I could imagine as I plunged the needle into Arden...
I rubbed her leg and then turned my attention to Cole as I wondered what all of this must feel like to him. I smiled and put my hand on his face in an attempt to make everything feel okay, that's when I felt the bumps on his neck. I asked him to turn his head and saw that he had large bumps, that to my untrained eye looked like enlarged lymph nodes. The lumps were on both sides and ran down his neck from his ear to his chest. I though in an instant that he had cancer. Keep in mind that I had no reason to think that, it was just what popped into my head, "Lymph nodes > enlarged > cancer > Arden has diabetes > Cole has cancer".
I've never been hit in the face with a shovel but I bet I could describe the sensation with a grand amount of accuracy. The last thing that I felt that night was my hope leave my body. Every sense that I possessed shut off. I couldn't hear, think, smell, I stopped worrying about the traffic whizzing by - I was bereft in every way that we count ourselves as human beings. It's a good thing too because the ride home would have been unbearable if my senses were intact.
The next morning we took Cole to the doctor, he of course did not have cancer and we were told that it isn't uncommon for the lymph system to become enlarged during an infection.
With hindsight I can see that this moment was among the first in a long line of lessons that Arden's diabetes has taught me. Before this moment I thought of myself as someone who didn't panic, I believed myself to be cool under pressure. As it turns out, I had never been under this level of pressure. I know for certain that I wouldn't respond like that today because the person I have become, or perhaps I should say, the person diabetes has forced me to become - doesn't break so easily and doesn't give up so quickly. Diabetes takes far more than it gives but the stuff it gives is valuable - it's one of my goal to pass that message onto Arden and to all of you.
more posts on Arden's Day
Helping Children with Diabetes Gain Independence
This is the finale of the series. Links to previous posts are below, if you'd like to read it in order.
I was asked recently on my blog if I had any tips for a family that was considering Arden’s school day diabetes management plan. Anything that I hadn’t mentioned – perhaps a tip that would make the transition smoother. I responded in part by saying, “I didn’t know what I was doing when I started either.” I think that’s the most powerful message of support I could offer anyone. None of us know what to expect when we forge our own way with type 1 diabetes. All we have is the knowledge that we’ve been able to accumulate, but I think that’s a lot.
Consider how little you knew on the day that your child was diagnosed and remember how your doctors only began to scratch the surface when they explained diabetes care. Now, you probably have more diabetes knowledge than three doctors combined. I know that I am the foremost expert on my daughter’s physiology. I can, with great accuracy, predict how her body will react to insulin, exercise, stress and all of the factors that we pay attention to. I didn’t learn these things in school or at a doctor’s office, I learned them by experiencing diabetes – and that’s how our kids are going to learn.*
I want to caution you to not get too comfortable and to always keep a watchful eye as our children take over more and more control of their day-to-day diabetes health considerations. Because even though they are some of the most courageous and levelheaded kids a person will ever meet, they are still kids. I think they want and need to know that we are here. “We” doesn’t have to mean just parents. If you end up trying Arden’s plan in school, please remind the teacher that your child’s diabetes independence doesn’t mean that they don’t need an adult to be concerned and watchful at times. My friend’s new book reminded me recently that sometimes the most responsible children tend to get forgotten and that space can lead to apathy for them. Sometimes the trust is easy to take advantage of, especially if the child is experiencing diabetes burnout. It can happen to anyone and it will, so always remember to be a presence during those formable years.
It’s my sincere wish that this series has helped you to feel powerful and more in control. I hope that something I’ve shared has given you a new perspective and made you feel like the idea of anything being possible isn’t just something you read on an Internet meme. I also want to thank you, because I learned something from writing these pieces. I learned that I was getting too complacent and that we should be taking what we’ve learned from the last year of managing Arden’s diabetes from school and make something new happen.
I’m very excited to share that by the time you read this Arden will have gone to a concert with her best friend and her friend’s mother, without me or my wife in attendance. I’m going to take the things that I’ve learned from Arden’s diabetes management at school and use them to let go a little more. I’m going to use them to give Arden more freedom, so that diabetes can be a smaller part of her life. It may take a lot of self-control not to drive up the interstate behind our friend’s car and sit in the parking lot of the stadium, but I’m going to use the same courage I felt in an e-mail one of you sent me recently. If you can read about what I do and find the strength to try… so can I.
Thank you so much for reading!
My best,
Scott
Ganémosle la carrera a la diabetes (Lets Beat Diabetes Race)
I'll be speaking in Santo Domingo, D.N. this weekend at the Ganémosle la carrera a la diabetes.
One goal, inspire and support people living with diabetes! @DOCIRL
Forgotten Wallet Buys a BG of 25
Perhaps you saw the picture that I posted yesterday of Arden making a play during her weekend long softball tournament? It was accompanied by a caption that read, "Tournament champions! Five games in two days, not one low BG. OmniPod & DexCom perfect together. #diabetes #softball #undefeated".
Tournament champions! Five games in two days, not one low BG. OmniPod & DexCom... perfect together.#diabetes #softball #undefeated
I probably could have written a blog post about the experience but I was still plenty exhausted from the weekend - so I went with a simple photo to not only celebrate, but to let you all know that it can be done. Long hot days, travel, little sleep and a lot of exertion can be managed with a few diabetes tools and a little extra focus.
Do you know what a CGM and insulin pump can't help you with? They are not designed to remind a person that they put their wallet into the glove compartment of their wife's car - if they did, yesterday would have gone much better.
This is the story of a blood glucose reading of 25, that happened in a restaurant - it was an old school low, no working CGM and enough rookie mistakes to fill sharps container. Ready?
As previously mentioned, Arden had a softball tournament that lasted all weekend and required us to stay in a hotel on both Friday and Saturday night. In the fine tradition of baseball/softball lunacy, we scampered from the field Sunday afternoon moments after Arden received her championship trophy, to make the ninety minute drive home... so our son Cole could pitch in a 4:30 pm game (Five innings, no runs btw). Anyway, during that drive I put my wallet into the glove compartment of my wife's car and never removed it. This was no big deal, until I found myself in the parking lot of a restaurant the next day - with no money.
I guess that I felt pretty silly having driven ten minutes to the restaurant with my kids and one of Arden's friends in the car only to find that I didn't have any money. I couldn't believe that I forgot my wallet. Then I recalled that it wasn't just abandoned at home, but was in Kelly's car. I thought for a second, asked my son if he had some cash that I could borrow and we drove home to get it from his room.
Ten minutes to the restaurant, a few minutes sitting in the parking lot figuring out what to do, ten minutes home, a few minutes to gather the cash and ten minutes back - then we got our seats, read the menu and ordered.
Lots of confusion, lots of running around - lots of opportunity to forget that I pre-bolused Arden for the meal, when we initially left to go out to eat, you know - almost an hour ago!
My brain snapped back into diabetes mode when Arden said, "Dad, I feel dizzy". I asked her to test. It took a few moments then suddenly the math came to me, Ten minutes + five + ten + five + ten + ten x I bloused for a meal / the CGM is still calibrating = JUST DRINK A JUICE!
I stayed calm not only because we were in a restaurant but because one of Arden's friends and teammates was sitting in the booth right next to her. I prioritized; stop seizure, try not to panic, juice, test, stay focused. Arden's BG was 50 when we tested but I could tell, even without her CGM that she was dropping fast. Not because I knew how long it had been since we bloused, not because a could see it in her face - I could tell because of what she said when I asked her to keep drinking.
Arden took a few sips and then put her head on the table. In my opinion, one of the most frightening and nauseating side-effects of low blood sugar is the inability to care about your own life. "Arden keep drinking, I really need you to keep drinking". She didn't move, I knew she heard me but she could make herself care. Arden understands what will happen if she doesn't drink the juice and she couldn't, because her blood didn't contain enough glucose, make herself care about her own life.
I instructed my son to stand up and then I picked up Arden and moved her to my side of the booth. "Cole, go get apple juice from the waitress, walk right up to her - be fast". I got Arden to finish the juice that we carried and tested again, her BG was now twenty-five. With no CGM arrows to rely on, I just wanted her to keep drinking. Cole returned with the apple juice (Arden doesn't like apple juice) and I had to beg her to drink it - I whispered in her ear, "Arden, please drink this, I think you're about to have a seizure", she responded without hesitation, "I don't care".
Before I knew about diabetes, if you would have told me that a reduction in the amount of sugar in a person's blood would make them cease to care about preserving their own life, I would not have believed you. Continuing to exist is perhaps our most basic and natural instinct, it has kept humans alive and thriving for untold millennia and yet, too much insulin can make you lay down and die without a fight - even when the fight is something as simple as drinking a juice.
I kept talking until she would drink, soon the waitress brought bread and other foods, Arden began to eat and a few minutes later her BG was above fifty. She took a few more minutes to pull herself together and then asked to go back to her original seat, with her friend.
My heart wanted to race but I stopped it from doing so, my eyes wanted to cry but I did not let them. I couldn't breath and I couldn't stop thinking about all of the avenues that I should be considering. Where is more sugar if I need it, when do I let others know how close we are to a real medical emergency, "don't you dare panic", and how the hell did you leave your wallet in Kelly's car? A swirl of thoughts and emotions but they were no longer needed, it was over as fast as it had begun. Now all I had to do was try to put my thoughts all back where they belong. Then the waitress put Arden's meal in front of her and I had to, and this almost seems unthinkable, had to count the carbs that I used to stop the low because I was going to have to bolus again for the meal. Only brave blousing can stop a rebound high. Time to be brave.
I must have looked terrible by this time because my son asked me if I was alright. I only responded, "It sucks being an adult sometimes" - and then we ate lunch.
From Friday night until Monday at noon, I made hundreds of decisions about Arden's diabetes. Some how I was able to manage her through five softball games, swimming, at times - less than healthy food choices, exposure to the hot sun and then I left my wallet in my wife's car - a simple mistake made on Sunday night that took us up to the brink of Arden having a seizure on Monday afternoon. Had Arden not felt dizzy, I don't know what would have happened.
UPDATE: I probably should have included in the original writing that Arden's BG, at the time of the pre-bolus, was 230. It was a restaurant that we frequent, knew what she was going to order and how many carbs it contained.
Interview: Leiberman Live on Howard 101
What is a Wack Pack?
If you've ever found yourself singing "Imran Khan lives with his dad and mom", the Wack Pack needs no introduction but for those of you that are not familiar with the Howard Stern radio show... the "Wack Pack" is a term used for the people who regularly call into the Stern Show who may not be, lets say, so regular. Over-the-top fans, angry drunks and people who appear less than balanced are but a few of the folks who make up this odd yet completely fascinating group.
'Leiberman Live' is a fifteen minute news program that runs daily on Howard's SiriusXM radio channel. The show is a rather unimaginable mixture of real news, Wack Pack reactions to said news, and one outsider who has a unique perspective on the topics of the day.
Yesterday, I was that outsider...
The show was incredibly fast-paced, often serious and periodically ridiculous - I had a fantastic time and getting to do the show live at the Sirius studios in New York City was a blast. When I was booked on the show last month the topic was parenting and spanking but the tragic school stabbings that occurred yesterday and the news story about the couple who took their small children on a ill-fated trip across the ocean, were also addressed. The show may not be for everyone, but if you think you may enjoy hearing me give rapid-fire answers to serious parenting questions just moments after men named Bobo and Ira the Weatherman (I don't think he was really a meteorologist) prattle on about, well, I'm not sure about what - I'd check it out.
Me (On left) and Jon Leiberman
Huge thank you to Howard Stern (Who I'm sure doesn't know I exist), Jon Leiberman (Who was a mensch) and Connie (Jon's fabulous producer) for having me on the show - great time, big fan!
My apologies to those who are currently singing "Imran Khan Lives with his dad and mom" - maybe the audio from my segment will help to cleanse your brain pallet...
