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Entries in Caregiver (20)

Monday
Jul082013

What do you want to tell diabetes?

This morning on Facebook I found myself wishing that diabetes was a 'someone' instead of a 'something' so I could tell it to go f#^& itself for keeping me up all night. I had a particularly long day working around our house in the heat yesterday and today I find myself with more writing to do than time in the day - I really needed that sleep.

I must admit... venting about it online felt good!

In fact, I liked the experience so much that I thought you may like to tell diabetes off and start the week with a clean mental palate too. So feel completely free to leave any message that you may have for diabetes in the comment section of this post. Don't worry about language or tone... let it fly. Usually, I love to see who left comments but today, wanting to be anonymous is completely understood. I hope that you find it as cathartic as I did to say, "fuck you diabetes".

 

Monday
May202013

Diabetes Forecast Magazine

 

Keep your eyes open for an interview with me in the upcoming June issue of Diabetes Forecast Magazine. I'll be featured in an article titled, "Fathers Know Best".

 

Monday
Apr152013

This Picture Makes Me Smile

 

Do you see Arden in the middle of the purple glowing smoke, the one wearing the hat. Arden danced the night away on Saturday during her first Bar Mitzvah without a care in the world. I just wanted to take a second to tell everyone how grateful my family is for the technology that makes moments like this better. Without Arden's DexCom G4 I would have interrupted her fun countless times during the evening. Each time taking her from the moment and drawing attention to her diabetes. Instead, we were able to monitor her post meal BGs from across the room and when she did require a bolus of insulin, I never took her OmniPod PDM out of my pocket. 

Wireless. Tubleless. Goodness.

Knowing that Arden was safe, carefree and completely unencumbered by diabetes while she danced is a feeling that may be lost on other parents, but I think that every parent of a child with type I will look at his photo and smile along with me. As a father, I found this moment to be completely joyous - nothing beats seeing my kids live without limits.

Have a great week!

Scott

Wednesday
Nov142012

Feel World Diabetes Day 2012

I've spent some time recently thinking about what World Diabetes Day meant to me, what did I want from it, what did I hope it's existence would leave for those that witnessed or participated. On Monday night I found the answer to my question...

Arden brushed her teeth before bed, she put on a silly pair of pajamas and climbed under the sheets. Her voice called to me and said that she was ready to be tucked in. When I entered her bedroom she had the lights out, her face was illuminated softly by a stream of dimmed light from the hallway. Her eyes were closed, she was pretending to be sleeping so that she could try and scare me as I approached. I stopped halfway into her room to tease her, she was trying so hard not to move, carefully holding her lips together so that she wouldn't smile. I looked at her face for a long moment before I sat next to her so that she could scare me. She popped up, I acted frightened, and then we laughed. We talked about the next morning and she expressed how happy she was that I was able to schedule a play date for later in the week with one of her friends. It was a wonderful few moments, some of the best that I had that day. 

Our party was crashed seconds later by the electronic beeps of Arden's CGM. Three beeps to be exact. It's urgent bells told me that her blood glucose was falling, I looked at the clock but I knew that it was doing so far sooner then I planned. Those beeps brought me right back to reality. We tested and continued to mess around, Arden's spirit was unchanged. I decided that Arden needed a juice box, she didn't want it, actually Arden hasn't enjoyed a juice box in some years because they feel like medicine after all this time. I could tell by the slight change in her face that she didn't want to drink the juice but she didn't make a fuss. I smiled and continued to talk about the next day as she forced herself to drink. It occurs to me now that we were both putting on a brave face for the other.

I hope that World Diabetes Day allows one new person to see my blog today, anyone's diabetes blog really. I'd very much like it if as many people as possible could understand more about type I diabetes. I'm not talking about the tried and true stuff. No talk of how many shots or pokes, those things suck but you can't fully appreciate them if they aren't your reality. But feelings, we all understand feelings.

This may seem on the surface to be a minor thing, a petty inconvenience but please trust me when I say that it's very much more. I sat on the left side of Arden's bed as she forced down a juice box that she didn't want. She did it so that she could go to sleep without worrying that her BG would fall to a dangerous level, she did it because she had to, did it because that's what she does. She tried to keep the happy in her face, tried to hold on to the joy that we made together only moments before. She did a good job, I may be one of the only people in the world that could have seen through her mask. 

Watching my daughter with that juice reminded me that there are forces in each moment of her day that manipulate her life. These moments aren't scripted, we don't know when they will happen, how they will end or if we are responding to them correctly. They demand that we stop living and pay attention to them so that we may continue to live. It probably only took her three minutes to consume the juice, but those minutes and all of the ones like them, they steal from us and they take more then time. My hope for WDD is that someone takes the time to understand a little better that which is the life of a person with diabetes, and that they feel as best they can what it means to carry type I through each day. I think that understanding will make an advocate out of even the most casual observer, and that understanding will lead all of us to a brighter tomorrow.

Arden hates drinking juice, I loath having to ask her to do it. Each time acts as a mallet that strikes at my soul. I can't be sure of what it does to Arden, I probably couldn't handle knowing. Please don't think of this as a story about a juice box, it's a story of a chronic disease and it's effects on an innocent person. I began this post with the intention of describing the sadness that watching diabetes do what it does has on me, but I can't find the words. I guess I'll simply say that it hurts, physically hurts me. It changes me. Some days and in some ways for the better, sometimes for the worse, but I am inarguably changed. 

November 14th is World Diabetes Day, November is Diabetes Awareness Month, people that live with diabetes do so bravely each and every second of their lives. Please try and feel what that means, let it change you.

Monday
Oct152012

Argo

 

We don't have many diabetes ready babysitting options, and so we don't go out very much by ourselves. I'm sure that sounds familiar to a lot of you. Earlier in the week I found myself wishing that Kelly and I could get away for a couple of hours and then it dawned on me... Arden and I are managing her blood glucose so well via text messages from school with no adult involvement, why couldn't we do the same with her at home and me in a remote location?!

I enlisted my mother to babysit and told her that there wouldn't be any diabetes related decisions to be made. So with the comfort of knowledge that our New School Plan has brought, Kelly and I made our way to the cineplex and saw a movie that didn't have one, not one, talking animal in it!

It was the opening night of 'Argo' and so the theater was packed. Since we couldn't find a seat without a direct neighbor, I felt like I owed the person sitting to my left an explanation for why I'd be texting during the movie. A few moments before the trailers were about to begin I excused myself and spoke to the woman sitting next to me.

"Hi, I'm sorry to bother you. Our daughter has type I diabetes and I'm going to be helping her manage her insulin by text message during the movie". I was prepared for about a thousand different responses, every possible reply except for the one that I got. "Us too, well, our daughter has type I too", she said. "She's older now... how old is your daughter, when was she diagnosed?". We chatted for a few moments about our girls and then she said not to worry, put her hand on mine and told me that she hoped we enjoyed the movie. I smiled and said, "you too". It was like twitter, but in real life.

I guess we can get out more often now... It's been so long, pretty excited!

Oh, and both Kelly and I thought that the movie was excellent, really, really well done. Suspenseful and tense, even though we knew the outcome.