Coming to a TV near you
Arden recently won the opportunity to appear in a local 30 second TV spot for the JDRF and yesterday we went to film it at the ABC news studios in Philadelphia.
After she signed in and had her picture taken for security, we we’re taken to a waiting area just outside of the news studio. Arden briefly met the other kids that would be joining her in the commercial and then it was off to work.
The ad was centered around Andy Holder, an iron man athlete who also happens to have type I diabetes. Andy’s job is to look into the camera and remind everyone that the Walk to Cure Diabetes is fast approaching and ask them to get involved. At the end, Andy says a few nice words about the kids and then they pump their fists above their heads and say, “yea!”.
The kids were a bit nervous (see video clip) but the mood was broken after the first time that they said their line. They were so reserved and quiet that it was funny, the ensuing laughter loosened them up and then they were able to finish.
When we arrived home Arden watched the news and she was able to see the chair that she had just been sitting in 90 minutes earlier. She asked us, “is that happening right now?”. Realizing that she had just been in the chair that was live on TV may have been the most fun that she had in a day full of great experiences.
The ad should begin running on ABC in New Jersey, Pennsylvania and Delaware in October... I’ll be sure to let everyone know when you can catch it and I’ll also post it here when it’s available.
It’s walk time so no blog post would be complete without me reminding you that... you can walk with Arden to show your support for her and type I research or make a charitable contribution to the JDRF in Arden’s name all at this link.
Great thanks to those of you who have already made a donation or are planning on doing so! We greatly appreciate your support!
More thanks: To everyone at the JDRF that made this afternoon possible for Arden, the nice people at the ABC studios for their hospitality and Iron Andy for his continued support! The commercial was sponsored by Good Neighbor Pharmacy.
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The following are archived comments from this post. You can post new comments below.
2010 JDRF Walk
Hello everyone,
I write a lot and it almost always comes easily to me. I write about diabetes, some times I spout off about politics in private emails with my friend Adam (hi Adam). Let’s be honest, if you know me or if we’ve even spent a few minutes together you know that I am chatty as a teenage girl. Topic doesn’t almost matter... I like to communicate. If boredom strikes I’ve been known to reanalyze a topic that has already been completely exhausted (right Kel ;))... Talk, write, write or talk, it doesn’t matter to me, the words just fall out, except when it comes time to write this note.
This one weighs on me.
I’m about to ask you to part with money to support Arden’s charity which I hate doing and here is why. Our daughter is chronically ill, her life is difficult and it will likely be shorter then it should be. I’m not a doctor or a researcher so I’m powerless to find a cure for her. The JDRF, however, is powerful. They fund serious research that is actually helping people today and showing significant progress for the future. Additionally, they are a force in Washington, D.C. that advocates for Arden daily with our Senators and Congresspersons. My problem is, I can’t give them enough money to make a real difference, which is why I ask all of you to pitch in. So, that’s the first reason that I hate doing this... because I wish I could do it myself and I don’t ask for help easily.
The second reason is that I grew up with very little money. I know the value of a dollar and what it means to a family, especially recently. So this feels like begging to me.
Moreover, I hate asking because I know that some of you may be thinking what I live in fear of every moment... that they aren’t ever going to cure a disease. There are cancer walks, and heart disease walks and autism walks and on and on and nothing ever happens... so why waste the money on a diabetes walk. Honestly, I understand if that is your first reaction. I know too that I’m not the only person asking you to support a cause and that there is only so much that you can do. Because I know that I'll be asking you for this donation I try very hard to support the JDRF and diabetes related issues throughout the year. I think of it as a karma bank that I make as many deposits into as I can to counter balance the funds that you part with at this time. It’s not dollars for dollars but it is effort for effort.
This year Arden has posed for pictures that are currently being used in brochures and pamphlets at her children’s hospital to educate the parents of kids with type I. We spoke with our congressman and shared what it is like to have type I and then asked him to support diabetes related bills. Arden has given an on camera interview that should appear on ABC news in Philadelphia and on Web M.D. later this year, we also just gave a print interview to a New Jersey newspaper about living with diabetes and next week she will be filming a television commercial supporting the JDRF. Additionally, we keep Arden’s Day up, running and current on the web and on Twitter. I can’t begin to tell you how many people from all over the world that I have spoken to, shared advice and support with all because of the site. The site actually helps people - Five years ago, I never would have believed it if you would have told me that I would be the person doing all of this. I hope that these efforts are enough to show my respect for your donation.
I am always so tempted to describe Arden’s Day in raw terms because part of me feels like no one could understand how oppressive having type I diabetes actually is. It’s a blessing that Arden doesn’t “look” sick but please make no mistake, she is. Perhaps your money will find a cure, maybe it will make a research breakthrough that develops a new machine to help her live, it may just pay a lobbyist to advocate for her but it definitely will fill my house with hope. You would need only to live through one of Arden’s days from dusk till dawn to know what hope is worth.
So that’s it, I wrote too much and I was probably too honest... just let me leave you with this. When we’re young we feel powerful and in control. As we age we gain perspective through our experiences, when we look back we realize that we didn’t know much. I’m told that when I get older, much older, I’ll look back on this time and have the same thought - a lot of people say that. But I don’t think that’ll happen to us because having a sick child strips away all of the pretense in your life. I don’t want anything or need anything, all of my youthful dreams seem trivial and there is nearly nothing that I have or know that I would trade for Arden’s health. I’d trade my home and live on the street, my life, my health, any of this stuff that I have. Anything I could do to stop her suffering, the stress, the ever looming sense that today is the day that something goes wrong - because something will go wrong one day. Honestly, just to see her wake up in the morning and not have to test herself, that alone would cause my heart explode with joy. As it turns out this whole thing, our lives, they are what they are largely because of the perspective that we view them from. Everyone has bad stuff but I’d wager that having a sick child trumps most of it.
I hope this note found you and your family well and I apologize for it’s tone and any sadness that you may experience after reading it. Most of you know that I only reach out once for Arden’s walk in this way and then I follow up with a few reminders as the date grows near - this year is no different. Also, anyone that would like to walk with us on October 24th is welcome, friends, family or strangers, we’d love to see all of you there! You can sign up to walk (links at the bottom) or send me an email at skca@me.com.
Tax deductible donation to the JDRF can be made through Arden’s walk or you can contact me for the address if you’d like to send a check.
I really can’t thank you all enough for your attention and support! You are all tremendous people and I’m humbled by your dedication to Arden.
My very best,
Scott
No lectern required
I went into Arden’s class this morning to give the six year old version of my, “what is diabetes” talk to Arden’s classmates. It went very well, the children were very attentive and interested, they asked good questions and took the answers in with a great deal of interest.
After asking the kids if any of them ever had a cold only to have it go away (they all raised their hands), I described that Arden has a part of her body that doesn’t work correctly and that unlike their colds Arden’s body wasn’t able to fix what stopped working. Not too bad considering I didn’t rehearse. We chatted about insulin and foods that are at times more like medicine and then as on cue Arden’s DexCom indicated that it was time to test. Luckily those little kid’s eyes don’t have lasers built into them or Arden’s finger tip would have been burned off... It was completely silent in that room while she tested. Then we talked some more, I assured them that Arden was no different then they and stressed that while if they notice something strange about Arden’s behavior they should tell an adult... that she did not need any special attention (Arden had a classmate last year that tended to treat he like a baby and she was constantly looking after her in a way the Ards found irritating after a while).
I explained why Arden was late today and then went along my merry way. One more step closer to breaking down the wall of understanding between type I and the world - 23 more people on the planet won’t look at type I again as if they are any different then anyone else.
Be transparent...
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I am beat
It was about 10 pm last night when I first thought, “something is not right” regarding Arden BG. She shouldn’t have been so out of range (high), it was well past dinner but I thought maybe her mac & cheese was taking a second shot at her BG so I gave her more insulin and waited.
During this wait I watch the season finale of ‘True Blood’, I picked that show because I felt a bit like a vampire sneaking into Arden’s room to take her blood. Please don’t tell Kelly that I watched it as she is in Switzerland on business and I’m quite sure that she’ll be miffed that she hasn’t seen it and I have. Anyway, I went back after the show and checked Ards again and all looked like it was going well (she was coming down). Later (after watching Sports Center) Ards DexCom CGM beeped and I thought for sure she was falling but when I checked, her BG was on the rise again - so more insulin. I thought, “this was it for sure... I’ll just watch Entourage, check her again and I’m off to sleep”. After Entourage (oh Vince why have you taken the junkie’s path) a heard another beep - still her BG hadn’t moved. I was too tired to be annoyed...
I gave more insulin when I should have been thinking, “bad infusion site” but the site had been perfect for at least the last day so... I don’t know, it just didn’t occur to me. Now it’s a bit after 4 am and her BG is falling, not a lot but just enough that I thought that this was over and I passed out reasonably sure that when I got up at 7 all would be well.
I don’t think I fell to sleep until about 4:30 and WHAMO did 7 come fast but still I was energetic because today is the day that I’m going to talk to Arden’s class about type I and she was very excited. I woke Cole and reached for Arden’s CGM...
Her BG was over 350... Then the horrid feeling that I screwed up and should have swapped her infusion site nine hours ago hits me like a slab of concrete to the chest. She’s been getting minimal insulin for nine hours and that just breaks my heart. So I swap the pod and give a giant bolus with the intention of catching the fall with breakfast in an hour or so... but the fall doesn’t come.
8am, more insulin - 9am, more insulin, is this site bad too, no can’t be... but just in case I give her next insulin by syringe. Another hour and nothing - then I speak with Cathy at CHOP and she says to push even more fluids. Maybe Arden is dehydrated so the insulin isn’t having it’s full effect. Arden picks up the pace on the water drinking that I had her doing and we finally started to see results so I kept my appointment to speak to Arden’s class. With Arden in tow we were off.
Her BG was falling nicely during my chat with the kids and at one point we had to test her - she needed something to eat. I spent another 30 minutes in the nurse’s office getting Arden stable, I did so just in time for recess... I signed Ards into school, went over the last 10 hours of BGs with the nurses and came home where I am now writing about the day with white flashes before my eyes because I am so tired. Can’t really close my eyes now or I’ll miss the nurse’s calls.
Sorry for the run-on sentences and general lack of English writing rules being observed - I really am beat.
That is Arden’s Day... and apparently it’s mine too.
Please consider making a donation to Arden’s 2010 JDRF walk at this link.
Thorn
I learned something today that I am very proud of and I wanted to share it with all of you. A little back story... Last year was Arden’s first year of school and we spent a lot of time and effort putting her 504 plan in place. The process wasn’t always smooth but I found that being frank and honest was the best approach when asking the district for something that they either didn’t normally offer or that they weren’t accustom to doing. For the most part we always found common ground.
One of the things that I was shocked to learn during that process was that there was no consideration given for the time the children spend on the bus. No one thought a second about it (or so it seemed). So I went to work on a process for the bus drivers. I created the emergency card that is now on the bus (shown below), sub drivers are now told about Arden and given a chance to refuse the route if they aren’t comfortable with the added responsibility, Arden’s driver is always Arden’s driver - every year. As long as Arden has type I, Denise has a job. Denise attends the school wide ‘diabetes recognizing and reacting to signs and symptoms’ lecture that is given to EVERY school employee (I may have had something to do with that too ;) ...), Arden is the first dropped off and the last picked up to minimize her time on the bus, if the bus encounters a mechanical defect I am contacted by the driver and given the bus’s location so I can extract Arden. None of these things were easy to accomplish and they were all met with varying degrees of resistance but it’s important to understand that the school doesn’t resist because they don’t want to do the right thing, they resist because resistance is the human response to change. By keeping that one fact in mind I was able to make school and the bus a safer place for Arden and the other type I kids in our district.
Now back to that “thing” that I’m proud of...
Today I learned that the new program offered this year by our transportation department called the, ‘Medical/Special Needs Alert Program’ is a direct result of the plan that I put in place last year. No longer do parents have to make endless calls, take countless meeting and experience crazy stress just to make the bus a safe place for their child. All they have to do is call or send an email and they get everything that Arden gets... It turns out that some (in the district) always wanted this to be the way things were done but they could never internally get the district to move on the idea. It took me being a thorn in a few people’s sides to break the log jam free.
Go be a ‘thorn’ for your kid... You’ll be glad you did!
Last thought. I’m sharing our life in the name of transparency. Our children need the world to understand type I as completely as possible. That understanding is, in my opinion, the fastest path to a possible cure and in the interim the best chance our children have at the most normal life that is possible. I hope that this glimpse into Arden’s Day prompts you to make a small donation to her 2010 JDRF Walk for a Cure. Donations can be made at this link. The link is safe and secure and your donation is 100% tax deductible. Have a great day!
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We've had good success with our School District as well for making change. We went in as partners with the District. Beth and I organized the other parents of kids in the Autism Support classes and got the District to not only expand the elementary program but now as of this year will have ASD support from K-12. We continue to meet regurally with the Administration and teachers to keep on top of progress and see where we can do better. Some parents wanted to go in guns blazing but I talked them down and we did it my way. It worked and our kids are benifitting.