More from the Lilly blogger summit

At one time a $50 drug order with Lilly came with a free handmade medicine cabinet. 

When I looked around the room at Lilly's blogger summit I saw some very familiar faces looking back at me. In alphabetical order they were:

Leighann Calentine - D-Mom

Kelly Close - diaTribe

Bennet Dunalp - Your Diabetes May Vary

Mike Hoskins - Diabetes Mine

Scott Johnson - Scott’s Diabetes

Kelly Kunik - Diabetesaliciousness

Tony Rose - Blogging Diabetes

Cherise Shockley - Diabetic Iz Me, Diabetes Social Media Advocacy

George Simmons - Ninjabetic

Lorraine Sisto - This is Caleb

Kerri Sparling - Six Until Me

Kim Vlasnik - Texting My Pancreas

In the first few minutes it was just so amazing to see avatars sort of come to life in front of my eyes but after a while I began wondering who messed up when they invited me. This was a thoughtful group of diabetes advocates and as they spoke it was clear that they had insightful and valuable thoughts to add to the conversation. I began to feel a bit of pressure, I desperately didn't want to bring the level of discourse down when I put in my two cents. When I finally spoke all of my trepidation disappeared because I saw Bennet nodding along with what I was saying. Bennet may now wish that he didn't nod becasue I don't think I shut up for the rest of the day.

As the day progressed I was struck by how valuable it was to have so many different viewpoints responding to the same question. The people in the room continually gave thorough and informed responses to question after question. They made suggestions, gave advice and lent support all of which was so spot on that it could have been regarded as perfect. When all of the participants points were combined at any given moment the information was so complete that I kept thinking that combining our blogs would be the best way to help our readers. Together we were a world book encyclopedia of diabetes information (I guess I should have said Wikipedia). This feeling really is the core of what makes this community so valuable. The people in the room that day aside, we all have so much diabetes life experience and when we share it everyone benefits. It's unlike anything that I've ever experienced or expect to see again in my life.

By the end of the day I no longer felt like someone invited me by mistake. I realized that I misinterpreted the feeling I had as the day began. What I felt was respect, a bit of awe and a great deal of pride. Pride in the work that these and so many others do everyday for our community... Pride in the knowledge that I was a part of it.

A lot of good will come from our meeting, more perhpas then can be properly quantified right now. 

Phillies Spring Training: My diabetes free vacation

It took some maneuvering, we had to cash in our frequent flier miles but Kelly and I were able to give our son Cole a Christmas gift that we thought he'd never forget... Phillies spring training tickets.

I don't leave home often without my kids. Being a stay at home dad by definition means that they are almost always with me. Arden is especially always close to me, be it in distance or contact and I don't often have the opportunity to relinquish her care. Last week however was a boys week, Cole and I went to Clearwater, Florida to watch the Phillies get ready for the 2012 season while Kelly stayed at home with Arden.

This trip was to be my second diabetes free week in five years. I still maintained communication with the school nurses but after Arden arrived home from school, Kelly took the reigns. Kelly deserves a big shout out... she did a terrific job!

Our son Cole plays and loves baseball more then I'd be able to express here in a few words. An hour after we landed in Florida we were standing at the Bright House practice fields. Not five minutes after we arrived Cole turned and saw former Phillies manager, Dallas Green. His was the first signature on Cole's ball that would eventually include Mike Schmidt, Charlie Manuel and Ruben Amaro, Jr. and that signature marked the beginning of our week in the sun watching the Phillies.

We stood and watched as the players took batting practice, ran sprints, fielded their positions and more. Every few minutes a horn would sound and the guys would run to another station. Cole was enjoying himself in a way that I've never seen, his smile truly reached from ear to ear.

CLiff Lee, Carlos Ruiz

Every day around 10 am Cole would stand outside of the outfield fence and try to catch home run balls as the sailed over. After he was finished, I'd get out my glove and he and I would throw a ball. This was my absolute favorite part of the trip. Standing just outside of where his baseball idols were playing, having a catch with my son. It was so relaxing and so heartwarming. Imagine your child's favorite thing in the world, imagine being at the place where it happens and feeling so close to it that you could imagine that thing for yourself. That's what this was for Cole and I was fortunate enough to be there when he felt it.

We attended a game each day, five in all. In the evenings we'd have dinner and laugh together, never once did I wonder how many carbs were in the food we were eating. It was nice not to think about diabetes. One evening at dinner I consciously thought, "this is wonderful... not having to look across the table, trying to guess how many carbs are in Arden's meal". The good feeling that accompanied that thought only lasted a moment because my follow up thought was so incredibly sad. I found myself pondering the idea that Arden would never experience this feeling as long as diabetes was a part of her life. I felt an incredible guilt for being able to escape diabetes when Arden isn't able to do the same. Those thoughts and feelings were incredibly sobering, they literally showed me where the term, "feels like a wet blanket" came from. I instantly felt the weight of her reality, I realized that Arden likely won't feel this release for a very long time, if ever.

Type I has given me a heightened perspective, I feel like knowing just how difficult life can be with diabetes allows me to properly put other situations into their place. I used that perspective, summoned up the resilience that diabetes has given me and shook off that terrible notion. I turned my attention back to our dinner conversation and was able to separate what was happening in my life in that moment from what I knew was happening in Arden and Kelly's back home.

Spring training was a marvelous experience, one that we may try to do again one day. I want to thank the Phillies Director of Public Affairs, Scott Palmer for the kindness he showed to Cole while we were in Clearwater. I wrote to the Phillies and told them that we were coming to spring training, I explained how often diabetes effects out lives and how wonderful Cole is at supporting his sister and patiently waiting while we treat low BGs, wait to eat and more. I expressed how much I'd like this trip to be just about Cole and that I wanted to make it extra special for him if I could. Mr. Palmer met us at our seats, spoke with Cole and gave him a ball signed by Phillies pitcher Cole Hamels. In a week full of ear to ear smiles, this moment ranked right at the top for Cole and I am grateful to Mr. Palmer and the Phillies for taking the time. 

Cole with Scott Palmer

To see more photographs from the trip please go to the Visual Record.

Cured

I remember the two saddest days of my life since Arden's diagnosis very vividly. They came at a very inopportune time. It was six months after Arden's diagnosis which was two months after I fooled myself into thinking that I had mastered type I diabetes. These days began strangely because Arden's blood sugar was eerily steady and a little on the low side. After breakfast her BG got significant low, almost as if she didn't need any insulin. She ate more to stop the BG fall. The food worked but there was no spike at all, which of course was strange. In the moments after I got her BG stabilized I thought, "maybe they were wrong and she doesn't have diabetes".

Having that thought, was the beginning of the longest, saddest two days that I've lived through since Arden's diagnosis. I knew enough about type I to be sure that I was wrong but everything that was happening said that the insulin wasn't necessary and it certainly seemed like she wasn't diabetic anymore. By the end of that day I wasn't giving injections for meals and I had to skip her pre-bedtime Levemir. I didn't sleep much that night, I was waiting up and testing. Waiting because I was sure that her BG was going to suddenly rise - but it never did. It just stayed between 90 and 107 all night.

This trend lasted through the next morning and then I did something that I knew I shouldn't, but had to do. I needed to tell someone that I thought Arden didn't have diabetes. I called my friend Adam who is also Arden's pediatrician. When Adam got on the phone I said something that I still remember to this day, "I'm about to say something that I know is wrong but I have to say it... I need you to set me straight and then I'll get off of the phone". Bewildered he asked me to proceed.

"Arden doesn't have diabetes. She hasn't needed insulin in over a day... is it possible that she was misdiagnosed?"

I knew that she was most likely experiencing a honeymoon period but I needed someone to tell me. With each moment that passed, I was convincing myself a little more that Arden didn't have diabetes. After a long pause Adam said, "no, she was not misdiagnosed, this is a honeymoon period... Arden has diabetes".

I thanked him, there was some awkward silence and then we said goodbye. I went into the bathroom and cried. The remainder of the day was emotionally excruciating, it felt like a cruel combination of every bad day that I had ever lived through.  Later that afternoon we ate dinner and Arden's blood glucose jumped to over 400. I actually felt better when it climbed so far, so fast. 

Today, after so many years of living with type I diabetes, I have seen countless anomalous days. Highs, lows, insulin resistance, sudden drops, more unexpected stuff then I could have ever imagined. I'll never know for sure what happened over those two days. What I can tell you for sure is that it's happened many times since then, including yesterday. Never again to the degree of those days (not needing any insulin) but there have been days when Arden only gets 15% of the insulin that she normally does and her BG never goes above 120.

Last night as we got ready for bed Arden's BG began to jump and then drop, I could see it on her DexCom and finger sticks confirmed what the CGM was saying. Arden's BG was 72 and then 125, then 93 and then 160. It was rolling up and down like a small boat on a very large ocean - this went on all night. The next morning things seemed to be back to normal but sometime around noon they went right back into that tiny boat. Lunch required much less insulin then we thought and then her BG hovered between 70 and 96 all afternoon. Never wanting to waste a day that Arden doesn't need insulin we went to dinner at the Hot Wok Cafe for Chinese. It was there as we looked over the menu that I did something that I've never done before...

I wrote this post to show how something that once seemed so terrible will one day feel very different. Today, we don't blink an eye when Arden doesn't need much insulin for a day or so. We refer to those days and their events with one word, "cured". Now when the cured days come I don't dream of a misdiagnosis or call Adam and I definitely don't go into a bathroom and cry. I just manage them as best that I can and get Arden a nice meal with a ton of carbs.

In my next blog post, I'll tell you how badly our meal at the Hot Wok Cafe went... I may call that post, 'Whisper Down the Lane' or perhaps 'Confusion at the Hot Wok Cafe'.

When diabetes throws you a curve... just go with it

My son Cole is a baseball player and we talk about different aspects of playing the game with some frequency. He's a good listener and he makes adjustments most times with ease. There is this one pitch that he struggles to hit, it's low and just a bit outside but is almost always called a strike. Cole won't swing at that pitch no matter how many times I assure him that he can reach it. I tell him all the time to, "just go with the it" but he resists.

Perhaps 'just go with it' is something you have to feel and not something another person can describe but I'm still going to try.

Managing your day-to-day stress as it relates to your child's type I diabetes is, if you can find a way to 'feel it', as easy as just going with it...

Arden's BG was pretty perfect Sunday evening when we changed her OmniPod, except for her basal she didn't get any insulin for the remainder of the evening. By midnight her BG had drifted up to around 180 so I delivered a small corrective bolus. An hour later her DexCom began to beep and indicated that her BG had risen above our high limit, which was odd because I definitely expected that the last bolus would bring her to 120 but instead she was more like 220.

Getting the idea that the last bolus wasn't making a dent in her number, I gave a little more and then waited two hours to see where we stood.

Two hours later was about 3 am and her BG had not moved, I knew now that we either had to push a large bolous and everything would be great or change the site and start over. I wanted to bolus big but at that time of morning I couldn't be sure that I'd be in any condition to act if she was suddenly 45 at 5 am so I gave another small correction and set an alarm for 6:30 (an hour and a half before Arden gets up for school).

When the alarm sounded I felt like I had sand in my eyes. I checked her CGM and saw the steadiest line you could imagine, steady but too high. I bolused this time for the full correction plus the 36 carbs that Arden would be eating for breakfast. I then literally thought, "that'll do it" as my head hit the pillow to get my last 45 minutes of broken sleep.

In the morning I got Cole off to school and went back upstairs to wake Arden whose BG I was sure was going to be in range and heading south just in time for breakfast. The rest went just like you think it did. Her BG was a little lower, falling but in no way was she feeling the full effect of that last bolus. The site needed to be moved.

In that instant my entire day changed.

Arden wasn't making the bus and I needed to wait out the last bolous before she could even eat. It was a mess but I didn't let the sudden upheaval of the day rattle me or Arden. I explained how our day changed so Arden wouldn't be flustered, we pulled out some books to read to help take her mind off of her hunger. I moved an appointment, slide a number of to-dos to the next day, emailed the nurse and her teacher and then refocused on my new goal for the day - getting everything back to normal and salvaging as much of Arden's school day as I could.

I realize that being a stay at home parent helps lessen some outside influences. I don't have a boss to report to so I can be flexible but it's not the mechanics of the day that I'm most proud of. I'm proud that when the pitch tailed away from me I didn't complain that it was a ball or that the ump was screwing me. In fact I didn't even wait for someone or something else to tell me what my reality was going to be.

I just went with it, I dictated what happened next.

There is a moment in almost every situation when you make a choice. You can dress it up anyway you like but in the end you decide how you feel and what you'll do next. If you go with it and just except that in this moment you took the best option available to you, well, I don't understand how you can be upset. We may not control the when or why in our lives but we sure can have our say in the how.

When my son learns to let go and swing at that low outside pitch he's going to miss a few, he'll foul off even more but once in a while he is going to drive that shitty pitch so far into right field that it'll make all the swings and misses very worthwhile.

Arden got to school at noon. Her BG was in range, she had breakfast and was ready to learn. We even got to spend some great time together. I did the best I could with the pitch I got.

I am a CareGiver

I had a fantastic conversation yesterday, during the phone call the person I was speaking with referred to Arden's Day as a Caregiver Blog. I'd never considered what kind of blog this was as I'm not the type to put things in categories or apply labels. Since that conversation, I've given a lot of thought to the phrase and as it turns out not only is this a caregiver blog but I'm a caregiver - and I always have been.

I was thirteen years old the day my father left us, I know for sure how old I was because he left on my birthday. He got up from the dinner table, went upstairs, took a shower, then he left and never came back. It was terrible, the first truly terrible thing that I can remember.

I am the oldest of three boys, my brother Brian is five years younger then I am and our brother Rob is five years younger then Brian. My mom only ever had a part-time job before that day but it turned into full-time work very soon. All of this left me at home with my younger brothers while my mom worked, I was also the only person in the house old enough to experience my mother's pain in a real way.

I've been a caregiver since July 12, 1984.

I don't think that the events of my life forced me to take on the role of caregiver as much as they led me to follow my natural instincts.. Truth be told, I was the only guy I knew that as a teenager talked about getting married and having children. When I was old enough to get a credit card I would buy things that I could afford to pay cash for so I could pay them back to build my credit. My family was of meager means and I always imagined that good credit would one day benefit me and the family that I envisioned. I was always planning to have a family and I want to thank my mother and my brothers for letting me practice on them!

Back when she was in college my wife Kelly (then girlfriend) fell on tough times with her family and things seemed bleak but I was there to support her. We were young and I imagine that her family doesn't understand to this day how we persevered and then flourished on our own at that age. What they didn't know then was that by the time I met their daughter I had been a parent for almost nine years. I'd lived through a divorce, being broke, I taught myself how to drive a car and a motorcycle, had difficult and demanding jobs, took care of a house, two children and a mother. Hell, I was the one that spoke to my brother's teachers if there was an issue at school. By the time I met Kelly I may have been chronologically twenty-one but spiritually, I was forty.

It was all building to something.

If you would have asked my on August 21, 2006 I would have told you that I'd seen it all and conquered most of it. I was proud of the life perspective that I had compiled and would have held up my ability to manage any situation against all comers - but that was August 21st.

In the early hours of 22nd Kelly and I were sitting at a red light on an abandoned road in Virginia, I never wanted a traffic light to stay red before in my life but I didn't want this one to change. We were on our way to a hospital having just self-diagnosed Arden as a type I diabetic with a meter that we bought at a pharmacy. The silence in that moment was so bereft of life, I'll never forget the pit in my stomach or how much I wanted someone else to be responsible. Talk about wanting to cry out "daddy", but I was daddy and I had been by then for twenty-two years. I summoned up every once of courage I had, opened my mouth and said to Kelly, “Arden has diabetes, I know you’re scared and sad, so am I but this is one these moments that we have to be strong for her”.  Kelly nodded, the light turned green and we didn’t talk about it again. Today as I write this I find myself wondering if I was talking to Kelly or to me...

That was five years ago and now I'm actually forty years old but at times I feel like I've lived ten lives. I have so many experience that keep me strong in the tough times and I am grateful for them all. Every painful moment, every day when there didn't seem to be an answer, every laugh and tear, triumph and failure. They all prepared me to be Arden's surrogate pancreas. If my dad didn't walk out, if Kelly didn't need me, if my mom wouldn't have cried, well, I don't know who I'd be today but because of those moments I am uniquely prepared to be a caregiver to a child with type I diabetes. 

Diabetes sneaks up on you some days in a way that levels you - just knocks you backwards. I know because it happens to me too. 

My advice is, take a deep breath, find your footing and keep going - and laugh whenever the opportunity presents.

Some may view being a caregiver as a negative or think that you don't have a life of your own but I can't think of a more important or noble thing to be and I wouldn't trade what I do for anything.

I'm a caregiver, a stay at home father and this is a blog about my life raising a child with type I.

Many thanks to the person who showed me that yesterday...

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