Jdrf Walk: 2011
Arden and Dan Stewart at the 2010 walk
A number of weeks ago I sent an email to every person that had every made a donation to Arden's JDRF walk. I thanked them for their past generosity and informed them that I would not activly be collecting money for the JDRF this year. I honestly felt like everyone could use a break.
We are still walking on October 23 and invite everyone to join us and we still belive 100% in the charity, please don't think otherwise. We simpley wanted to acknowledge that we understand how valuable your time and money is, say thank you and take a break.
If you want to walk with Arden on the 23, simply sign up at this link and I'll send you the details as the day gets closer.
Let me say in closing that if you would still like to make a donation to the JDRF, that is wonderful and you can still donate through Arden's link. I just won't be reminding you about it every few days as I have in the past.
CBS Philly’s Most Valuable Blogger: Editor's Choice Winner!
I'm so happy to announce that Arden's Day has been named the Editor's Choice winner of 'CBS Philly's Most Valuable Blogger Award in the Health/Fitness/Medical catagory!
Blogs were judged by a panel of CBS employees on frequency, presentation and content quality. Out of a possible 30 points we scored a 23.6 (of the 170+ sites in the contest the highest scored received was 25.6). I'm very proud and humbled that the site was so well received and thank CBS for sponsoring the contest.
Thank you to all who voted, your support makes this blog a reality. Without you, it's all just words lost in the expansiveness of the internet.
I just might have a problem that you'd understand
Arden's blood sugar fluctuates, that's no surprise to me or to you. It goes up and down, somedays more then others. There are times when it stays steady and the line on her DexCom CGM seems to be perfectly still.
My very soul feels attached to that line and I ride it like a roller coaster. Most days I don't feel the stress or hold myself personally responsible for where that line goes. I just do my best to keep it steady. The amount of care and effort that goes into managing that line is immense. It starts with grocery shopping as I try to plan meals that are healthy and have a low impact on Arden's BGs. It's tough with younger children because I'm also trying to find foods that they enjoy while gently directing them to healthy choices. Then there is pre-bolusing, the act of administering insulin before a meal to aviod spikes in that line, administering the insulin, watching that she eats and on and on. It must sound strange to an diabetes outsider but all of that is incredibly stressful and it happens every few hours.
The stress stems of course from the knowledge that high BGs are dangerous to Arden's longevity and the lows are no better. The real source of my terror is that I know Arden isn't feeling her best when her BGs aren't in range and steady. Every meal, every snack is an oppurtunity for her to live an hour or three in a way that any parent wouldn't want for their children. I feel all of those minutes in my heart in a way that would take a thousand words to describe.
When she seems to space out on the sofa as her insulin struggles to bring her back to normal, I feel like a die a little inside. When she falls to sleep at night as her BG drifts down, I watch hoping that it will stop where I need it to. When it doesn't and she gets too low, the moments strikes at my soul. If she stays too high and I have to give her more insulin, that's just another night that I don't sleep. In all, almost every moment of the day is lived in uncertainty.
Last night I just couldn't be strong anymore. I tried but when Kelly and I went to bed, I layed there taking deep breaths, trying in vain to expel my stress but I couldn't so I pulled Kelly close to me and when her skin touched mine I began to cry.
In an instant the tears were crashing down my face and I could hear them splashing on the pillow, I thought to myself, "I haven't cried like this about diabetes since Arden was diagnosed". When it finally stopped, I had an overwhelming urge to speak outloud the only thought that remained in my head but it felt stupid to say, childish even. I did finally say the words to Kelly even though they felt like a complete waste of breath...
"I don't want her to have this anymore".
Kelly and I spoke about stuff too private for even my transparent blogger heart to share and then I pulled myself back together, snuck into Arden's room and took a look at her CGM - I was strangely refreshed.
This morning while I was making Arden breakfast she started to sing out of the clear blue. I swear to you that I'm not making this up or embelishing in any way.
Arden started to sing 'Lean on Me'...
I'm crying now just thinking about it. I know that we are going to be okay and I wanted to share this with you so that you might consider a good cry next time there's "a load you need to bear that you can't carry".
She sang 'Lean on Me' having no idea of what transpired the evening before. No kidding, huh? Pretty great...
Sometimes email doesn't cut it
Earlier this week I spoke on the phone with the mother of a child with type I diabetes. The story of how we met is short but it points out just how powerful and rewarding helping another person can be.
Last year I spoke to our Congressperson about Arden's diabetes during a JDRF Promise Meeting which led to a staffer in his office sharing my web address with someone. That person emailed me with a question nearly a year later and we decided to talk over the phone instead of going back and forth vial email.
And I'm very glad that we did!
Had we not spoken, I would have just answered her questions and probably never heard from her again. Instead, we had a meaningful conversation that went far beyond her initial question and it left us both feeling better about a number of issues that can hang over parents like us.
The details are private but this statement tells the story. She told me that was so happy that she spoke because, "I always thought that I was the only one going through all of this" and that feeling left her with the terrible feeling that she must "be doing everything completely wrong".
I knew exactly how she was feeling because I've felt the same way in the past. I urge anyone that is feeling defeated by the rigors of caring for a child with type I to find someone to talk to who can understand your concerns. You can't imagine how much better you'll feel after you've spoken to someone that has walked a mile in your shoes.
I was so happy to be able to help another type I parent that the experiance rekindled an idea that I had last year... I hope to have some more news about that very soon.
Please know that the you aren't alone, that it is very likely that the moments that seem like failures are quite common and that I'm always here if you want to reach out.
First Day (of school)
The 504 meetings are finished and the D-supplies have been delivered to the nurse's office - summer with the kids is officially over. It makes me a little sad, I really do love spending time with them!
Arden was so excited this morning that she yelled for me the instant that her alarm woke her. As I walked into her room I said, "what's wrong" and without taking a breath she blurted out (very fast), "some of my friends in my class are going to be like, oh my gosh you're in my class... that's so cool!" and then she smiled the biggest smile and asked me for a hug. Then she hopped out of bed and got dressed - I sure hope that this cheery morning vibe continues for a bit..
Funny aside: As I was writing this the school nurse called with Arden's pre-snack BGnow. She said in a quite normal and upbeat tone, "good morning! Arden's blood sugar is fifteen and the PDM wants her to have.... wait - she's not fifteen - obviously, or I'd be screaming... she is 130 and her snack is fifteen carbs". We laughed pretty hard... Oh diabetes humor, you are priceless.
Arden waiting for the bus