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.
Fight one more day, and another if necessary.
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.