Huffington Post Live: feat. Me
I was on Huffington Post Live this afternoon for their 'Family Friday' segment.
The topics:
How do you deal with a defiant child?
Do you consider yourself to be your children's favorite parent?
and we talked about that guy on Tumblr who left a bunch of Post-It notes for his wife.
Diabetes Awareness on Huffington Post
Every November we celebrate Diabetes Awareness Month - is celebrate the right word? Anyway, there's nothing but blue circles as far as the eye can see, just as long as your eye can't see beyond the diabetes online community. After November ends you can be assured that there will be blog posts written that use phrases like, "We are just talking to ourselves" and even more that indicate that the choir is preaching to itself. We get sad that all of our effort didn't break the diabetes conversation wide open and we wonder why the NFL isn't wearing blue for diabetes?
Sound familiar?
I've been working behind the scenes to get real DOC based diabetes conversations/stories into mainstream media. It's a little too early to talk about a radio interview that looks like it will happen next month, but I can tell you today about one of my blog pieces that is running on Huffington Post Parents.
'I am not Diabetes' is featured on the Dads front page! Some love, shares and likes can push it to the front of HuffParents. My hope is that one day people will read about diabetes and understand it the way they do breast cancer and other more easily felt/understood diseases. My inclination is that when someone hears you have cancer, they immediately understand the situation that you are in. Diabetes, to the uninitiated is not so self-explanatory, but you know that.
Maybe they just need to feel a day with type I in the way that we do... I for one am happy to share what life is really like with diabetes, if it means bringing awareness to the next level. I'm not suggesting that I am the first person to do this, plenty of intrepid diabetes advocates are working tirelessly to get the word out. I'm just saying that maybe the world can handle hearing about diabetes in the way that we speak to each other about it. I'm not going to try and dress up Arden's story, or make it sound like it's been written by a NY Times reporter. I just want tell our real, raw stories until those football cleats turn blue.
The first step is to get this piece's popularity to a place where HuffPost will consider posting links on there Facebook page and then, hopefully, to the frontage of HuffParents. Please take a second, to like, share and comment so we can show the mainstream that the DOC has a voice that others would be interested in knowing more about.
'I Am Not Diabetes' on Huffington Post.
* I am not compensated monetarily for my writing on Huffington Post. They do provide a link to my book on my author page.
update
The post has been added to the front page of Huffington Post Parents and the main page of Huffington Post!
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.
I am not diabetes
Something happened the other night that caused me to think of a blog post that I wrote two years ago about the false perception of bravery. I'd love it if you could click over and read 'Bravery' before you continue but, if you can't, I understand.
Bravery is defined as the quality that allows someone to do things that are dangerous or frightening, but I think that's a romantic notion. Bravery is staying alive, it's fighting when things get messy because the alternative is terrible. Bravery is the reaction of the living when faced with peril. No one wants to be brave, we want to be safe, happy and warm. Bravery is fighting when circumstance takes away all of your other options.
People do amazing things everyday, things that look brave to onlookers who have yet to face such challenges. The uninitiated will refer to the actor's response as brave, but the people who fight the fight... they call it staying alive. Being thrust into a situation that requires bravery will take its toll - it ages you - seasons your mind and steals your innocence. Given the choice, I'd rather be uninitiated than thought of as brave, at least I would when it comes to my children's health.
Last evening I found out for sure that Arden would also choose the former. Arden and I were discussing something for school, something that required her to tell a story from a personal experience. She was having trouble deciding on a topic, so I shared with her that I like to write about things that I know a lot about because my experience helps me to tell a truthful and relatable story. I began to suggest diabetes as a topic when I was reminded that bravery is just another way to say that you are stuck, and have no other choice.
Arden tensed up and then exploded. Tears, anger and sadness poured from her as she bellowed, "I am not diabetes, everyone just sees diabetes".
Then she told me that a girl, who she didn't know, walked up to her at school recently and asked, "Are you the girl with diabetes?". When Arden responded the girl just walked away, her fact-finding mission having been completed. Arden may have perspective about diabetes, but she clearly doesn't want it... not yet at least.
Arden isn't brave, she's stuck. She's not resolute, she's trying her best to live her life. We can apply labels to people and actions, labels that make us feel better and maybe that's okay and needed for most days but please, take it from me, don't ignore that those words are only shields. Band-Aids that keep us from recognizing and treating the real hurt. The conversations, the ones that need to be had, are based in the truth given to me by my nine year old daughter on this day. The truth is, she is tired of pretending to be brave.
The conversation that Arden and I had after she calmed down was one of the most honest and valuable conversations that I have ever had with one of my children. Though I would have in the past, I never once told her that she was brave or that I was proud of her. I told her the truth. We aren't brave because we want to be, we do it because bravery is living and it's the best weapon we have and often the only good choice in a situation that is mostly devoid of freedom. We are brave because diabetes is unescapable, but it is not insurmountable and perhaps we should explore how to conquered it without wearing a mask.
I know we can do it, I just have to figure out how. How do you embrace the honesty of living with diabetes without letting it permeate every inch of who you are? Is the answer as easy as acceptance - it may be - but how do I help a nine year old to make that mental leap? Can I even begin to be a part of this understanding for her or is time the only real teacher of this lesson.
How to spot a D-Parent
Spotting a D-parent in the wild is easy if you know what to look for. Common indicators on stubborn BG days include, but are not limited to:
Needs haircut/The ignoring of personal grooming
Vacant stare from too much carb counting
Unshaven
Bed head
Dark circles under the eyes
Overall exhausted appearance from lack of sleep
Be advised that on days blood glucose values are in range, parent may appear normal. On those days you can approach* the parent as you would any other. However, if the subject has one or more of these indicators giving them a hug is currently the best known form of treatment.
*Please use your good judgement when engaging a D-Parent on days like the one shown here. There is no way to know how they may react. Arden's Day is not liable for any injuries that you may incur while attempting to have a conversation with a D-Parent in distress.
This has been a public service announcement.
