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
Diabetes Breaking Bad
I wrote about this the day after it happened a few months ago but haven't posted until now.
My story about last night begins one week prior... it is an epic opus that answers the age old question, "Will diabetes ever get easier".
My son Cole and I left for Virginia early last Friday morning to attend a four day baseball tournament. The ride took nearly six hours and the games began soon after we arrived. It was during that road trip that I first notice how different the weekend would be without Arden with me, you know, because when I got hungry and reached for a snack... I realized that I didn't pack any food for the trip. If Arden was with me – I would have had enough food to feed ten people.
The next thing I knew I was at a rest stop paying $400 for pretzels and an iced tea, it occurred to me as we checked out that this was the first time that I didn't experience any sort of separation anxiety about leaving Arden in another person's care. Don't get me wrong, my wife is an amazing D-Mom, but I still worry. You know what? It's not worry, it's more a feeling of shirking my responsibilities. This was the first time that I didn't feel like I was passing off my responsibility, it was the first time I didn't feel guilty. "Maybe", I thought, "maybe diabetes is getting easier?".
Kelly and I spoke once during the four day trip (Cole's team came in second place!) about diabetes, Kelly was handling things perfectly and really just needed help deciding if a high BG she was battling with was food or pump related. When she called, I felt like a consultant.
When we returned home Monday night it was almost eight in the evening, thirty minutes later Kelly and Arden arrived at the house from Arden's softball practice. Kelly promptly packed a suitcase and left for a three day business trip. We almost didn't see each other except to pass on the details of Arden's BGs.
The next morning I was unprepared for reality and still pretty tired from all of the driving I did on Interstate 95 so I took the kids to a morning movie. We sat down with a little popcorn, ready to enjoy the show. Then things broke bad...
Arden's insulin pump experienced an error and shut down about half way through delivering her popcorn bolus. I took a deeeeeep breath and said, "No big deal, just eat a little less popcorn and I'll keep an eye on you BG with the DexCom receiver". I remember thinking that we could stay for the movie and Arden could snack a little. I didn't want to drag everyone out of the theater and back home. Arden looked disappointed to begin with (and hungry) and she had brought a friend with her. Lots to consider. I reached into her bag for the DexCom receiver, and it never ceases to amaze me when this happens but, it also was having trouble operating.
I'm not going to lie, I recited a string of extremely offensive curse words to myself as I looked down at those tiny, glowing and useless screen.
Arden looked mortified and asked, "We have to leave, right?". I replied, "No way! I want to see the dragon movie, we are staying... just eat the popcorn really slow – like one piece at a time. I know that sucks but its better than leaving, we can go home after and take care of all this".
And that's what we did. Then we went straight home put on a new pump, changed the pesky CGM sensor and bolused like there was no tomorrow. Arden's BG was back to normal again in a couple of hours.
The next few days haven't gone much better. We have a couple of overused sites that need a break, sensors haven't been giving the best feedback and when I finish writing I have to call Insulet because Arden's PDM is causing her Pods to error every time I change the batteries. But none of those annoyances can hold a candle to last night.
Last night was one of the longest diabetes nights that I have ever lived through. Unexpectedly high numbers led to blousing that didn't accomplish much. Those boluses led to an injection, that led to a pod change and more bolusing... I didn't close my eyes at 6:30 am. It was the first time that I was glad that I missed 'Breaking Bad' when it was first on television because no show makes you not care how exhausted you are quite like 'Breaking Bad'.
Kelly is still away for work so the last I did before watching the sun come up was to send my son a text that read,
"Cole. Arden's BG was tough last night. I didn't go to sleep until after 6:30am. Please watch her CGM and wake me if you need to. Don't let me sleep past 11:30. Thanks!"
These last few days have been as unpredictable and taxing as I can recall and I'm fine. I didn't make myself nuts when I left Arden last week, I didn't overreact when shit went wrong, never felt scared at the theater or when I woke up this morning. It's just another day at the office but not because diabetes gets easier, it never gets easier – you just get much better at it (which is kind of the same thing but, you know, different).
Good Stuff
So, on this day, I want to thank diabetes... Sure it still owes us about 4,000,000,000 more good moments before I can even consider calling us even, but I won't forget this one.
I've sat through playdates, school trips (Oh the mind numbing school trips), countless practices and untold birthday parties while on BG patrol. I do my best - because I fear that the knowledge would make me crazy - to not wonder where all of the other parents go when they drop their kids, and run.
My time as a wallflower in Arden's life decreases each year as she takes on more and more responsibility for her type I diabetes care. Playdates are now managed via text message and I'm attending fewer parties, but I still stay at sporting events to help oversee her blood glucose levels.
During the early part of June Arden's 9 year old all star softball team won their tournament, ending softball for the summer. Well, it would have ended her season, you know, if she hadn't then tried out and made the 10 year old team. Since the older girls practice longer and more frequently than the younger girls, I've been spending two hours a day watching Arden practice. That is a lot of hours spent sitting on an aluminum bleacher, a literal pain in the ass brought to yours truly, by none other than diabetes.
But the greatest thing happened the other day, and honestly I wouldn't have been there if it wasn't for diabetes. So I'm writing this blog post in recognition of the fact that diabetes brought something positive into my life.
Arden plays third base on her 9 year old all star team but on the 10's she mostly plays right field. Prior to making the 10's, I would have describe Arden's ability to catch a fly ball as "not bad". That is, if the ball was within a reasonable radius of her, she could catch it most times. This is a skill that she has had to work harder on now that she is playing the outfield on a regular basis. I watched her struggle for the first week of 10's practice to track and catch these higher, harder balls. She never gave up but never-the-less, she was struggling. Then suddenly a few days ago, it all began to make sense to her and I was there when she figured it all out. I was actually looking at her when something that her coach said 'clicked' for Arden. It may seem like a little thing, but as a parent you don't get to see that moment very often. I was able to watch the lightbulb turn on over her head, I saw her smile when she first believed that she understood, and I witnesses the jubilation when she put her discovery into practice. I was only there because I was watching her blood glucose, because my life doesn't allow me to drop and run.
So, on this day, I want to thank diabetes... Sure it still owes us about 4,000,000,000 more good moments before I can even consider calling us even, but I won't forget this one.
-- Arden's team plays their first game tonight at 6 pm
Interview: University of Alabama Catcher and Type I Diabetic, Molly Fichtner
I asked Molly if there is one trait that everyone who makes it as far as she has possesses, and after some consideration she answered, “Shear determination”.
University of Alabama’s catcher Molly Fichtner is someone whose story needs to be told for a number of reasons. You may be interested in hearing about a young woman who has been working at her sport since childhood, others will want to know how a type I diabetic balances playing at the very top of a grueling hot weather sport with the insulin and carbohydrates that are required for her to live. I think that many who read this will be impressed at how Molly left UT-San Antonio so that she could chase a dream.
Though these are all good reasons to Interview Molly, none are why I tracked her down. I wanted to speak with Molly because she possess a will to succeed that is not often seen.
Molly began her journey to the 2014 NCAA Woman’s College World Series by playing Little League baseball with the boys and she said that she, “threw a fit” when her parents told her that she needed to switch to softball. Seems like her parents knew what they were talking about…
Molly really dove headfirst into softball when she was twelve years old. At that time she was playing on an 18u team (18 years old and under) and found herself asking her dad to hit her ground balls even after she would arrived home from day long summer practices, “that’s when my parents began to understand how much I wanted it”. Molly continued to work hard into high school, “I think I started peaking between my freshman and sophomore year and I thought, hey I could play in college”. She hit the gym, adding strength to her 5’ 2” frame and power to her swing, “I like being the underdog, I am 5’ 2” but my goal was to play like I was six feet tall”.
The winter after Molly first played with the older girls, at age twelve, she was diagnosed with type I diabetes during her Christmas break, Molly lost over ten pounds in a month and experienced other tell-tale signs of type I diabetes; like frequent urination, an insatiable thirst and generally feeling terrible. Those symptoms prompted Molly’s grandmother (a type 2 diabetic) to suggest that the family use her blood glucose meter on Molly. That’s the first time anyone would strike a hole in Molly’s finger to test her blood, her blood sugar was so high on Christmas Day that her grandmother’s meter couldn’t offer a number, it only said, “HI”.
Today Molly has a plan for handling every aspect of her type I diabetes in her life and when she plays softball. Her trainers test her blood sugar every thirty minutes during games and practices. She told me that regimen works the best for her but noted that during particularly intense games her adrenaline can spike, sending her blood glucose value climbing. She also knows that her blood sugar tends to get low after night games and so she makes adjustments to her food and insulin that help avoid them. Type I diabetes is certainly a challenge, it’s impact on the body can not be denied but, Molly doesn’t let that get in her way in her daily life and it didn’t stop her from becoming UT-San Antonio’s catcher.
In two years at UT-San Antonio Molly started in over one hundred games, she was receiving accolades and having success, “but I didn’t feel like I was being pushed to see how far I could actually go”. Her parents sat Molly down and asked if she wanted to transfer. “It wasn’t about the playing, it wasn’t about anything (softball related), it was about having the experience”.
Follow Molly on Twitter.
What Molly told me next is where her story lies. “When I arrived at Alabama I didn’t even know if I was going to play and it didn’t matter to me”. What Molly wanted was a chance to push herself, she wanted to be surrounded by the best to see if she could measure up, to have the opportunity to learn from the best; she wanted more and somehow at the age of twenty had the courage to give up a sure thing to get the chance to breath rarified air. I tried to tell Molly that I thought that what she did was incredibly brave but I don’t think that she saw it that way and after talking to her for a little longer, I started to see why. I think Molly just didn’t want to stop growing. What I saw initially as bravery, I soon began to think of as perspective. I told Molly that many of the people that I’ve met who have type I diabetes seem to have a very clear perspective on life and that I thought that clarity comes partially from living with a chronic illness.
During her freshman year at UT-San Antonio Molly played in a tournament against the Crimson Tide. “I got to see them firsthand. I looked at the players; the camaraderie… there was something different about the program. I was catching so I could hear them in their dugout”. That day Molly went 2 for 2 with two home runs and she threw out one of Alabama’s fastest runners trying to steal. She thinks that her performance in that game helped her when she called Coach Murphy to inquire about playing for the Crimson Tide.
Before Molly could make the call to Tuscaloosa, she had to ask UT-San Antonio to release her because NCAA rules prohibit players and schools from talking about such things while they are signed with another institution. She had to be released from the UTSA Softball Program and cleared by the NCAA prior to contacting Coach Murphy.
You can see why I thought Molly was brave; she told me that she was scared when she asked for her release, “They pulled my scholarship right away… I had no where to go”. Molly gave up a full scholarship and guaranteed playing time to have the chance to find out what she was made of. Molly Fichtner is a person who understands that life is more than just succeeding, it’s about being motivated and fearless, life is about wondering what you don’t know and having the audacity to try and find out.
I asked Molly if there is one trait that everyone who makes it as far as she has possesses, and after some consideration she answered, “Shear determination”.
Her advice to kids who have aspirations of playing at a higher level was simple but profound. “A lot of kids, when they think they’re good - they stop working. The determination to be the best you can be and to keep working and to not be satisfied, that’s what’s going to separate you in the long run. Be determined to take your ability as far as it can go”.
Last week Alabama fell short of winning the Woman’s College World Series in Molly’s senior year, losing to Florida in the championship round, but when she spoke about the experience all I heard was a positive attitude. She talked about wanting to have an impact on kids playing softball and being a part of helping them to fulfill their dreams through coaching by getting her Master’s Degree and continuing to try to find the parts of herself that have yet to be challenged.
I described to Molly that I often tell my children, who both play competitive baseball and softball respectively, that I don’t care about the end result... I care about how they do what they're doing.
Molly interjected, “At Alabama we call that process over outcome”.
I think that phrase perfectly describes Molly’s life and her success. In fact, I can’t think of a better message for people living with diabetes, children who dream of playing a sport on the world’s stage or the little girls who will grow up to be the next generation of woman; so I’m going to stop writing - even though I could go on all day about how impressed I was with Molly Fichtner.
Listen to Molly on the Juicebox Podcast
Carry that Weight
I can feel myself getting older, at least I think that's what this feeling is - I can't really tell. Sometimes my head is so foggy that I can't envision accomplishing anything in a day beyond fighting with diabetes. I do have moments when I think that all I need to do is push a little farther, jump back on a treadmill perhaps, retune my body. Then the fog surrounds my day and I run out of time, energy or the will to push myself.
I have this recurring thought that tries to sneak into my mind when I get tired like I am right now, but I don't allow myself to concentrate on it. I wonder if you know what I am talking about? It's a thought that I can see it in my mind's eye and I know what the entirety of the thought is. That is, I know what words I would hear in my head if I allowed my mind to settle on the idea and consider it - but I don't let myself do that. I never think about how much I look forward to the day that I can sleep, exercise or concentrate on myself because those thoughts feel like giving up on my daughter. I know that's unreasonable, but it is how I feel.
It's no great secret why I don't think about those things or why I imagine that I won't be able to do them when the day comes that Arden leaves for college. How would I do that? How could I possibly do that when Arden can never get away from diabetes. I don't like thinking about diabetes as an attachment to Arden. I want to feel sad on the day that Arden grows up and goes off on her own, that good kind of sad that tells you life is progressing in the way that you hoped.
That's why I'm trapped in a maze with no exit, we both are really. One day, a door is going to open and I'm going to be invited to walk through it, but I can't imagine walking through that door and leaving Arden behind to wander this unrelenting maze by herself. Moreover, I don't want to feel relief when Arden moves into the next part of her life. I want that happy sadness, I want hopeful, I want future - not relief.
“Boy, you’re gonna carry that weight
Carry that weight a long time
Boy, you’re gonna carry that weight
Carry that weight a long time
I never give you my pillow
I only send you my invitations
And in the middle of the celebrations
I break down
Boy, you’re gonna carry that weight
Carry that weight a long time
Boy, you’re gonna carry that weight
Carry that weight a long time”
I am as hopeful about life with type I diabetes as anyone that you'll ever meet but some days, and maybe it's just these long sunless winter days talking but, some days feel like we are surrounded on all sides by a unstoppable force intent on our destruction.
I don't say that life needs be fair, but it would be nice to be able to imagine an end game.
It would be easier to fight on days like today, if it didn't feel like we were only fighting to get to tomorrow... so that we could fight some more.
I don't mind carrying the weight, I never expected being a parent to be easy, but I can not accept having to pass that weight to Arden one day, like a weary baton carrier. I can't spend the end of my life watching her shoulder that burden when I know how heavy the relentlessness of diabetes feels to even the people who are living well with it. I imagine that we all feel like this sometimes, know that you are not alone. But we have to leave those feelings behind us and continue to move forward. There has has to be an answer somewhere out ahead of us. We can fight one more day, and another if necessary. I believe in us even on cold, grey and dank days. I believe in us when the sun feels like it's behind a thousand miles of heavy clouds. I even believe when diabetes weighs more than I can carry - I believe because the men that wrote this song, are the same men who saw the sun coming. I know that we can carry more then days like this lead us to believe.
I've never said this before but, I want a cure and I think I want it as much for me, Kelly, Cole and all of you, as I do for Arden.