I May Owe Him My Daughter’s Life

As a parent of a child (ok multiple children) with diabetes there are times when I have missed small hour alarms and slept through the night after some major correction bolus at bedtime only to wake in a startled panic holding my breath until I see my child breathing the next morning.

I haven’t ever met a parent of a child with diabetes that hasn’t experienced the above scenario.

Thankfully ‘dead in bed’ is not as common as we train ourselves to believe. Fear is insidious. In the early years after diagnosis we micromanage as much as we can to keep our kids safe. It is normal for us to do so. When my kids were younger I wouldn’t tell them the hours of sleep I missed to keep them safe. I still don’t tell them. Once my youngest overheard me talking about how tired I was after getting up or staying up (I can’t remember which, but I think I wrote about it a few years ago). My poor little man heard me say I was exhausted because of misbehaving diabetes and it broke his wee little heart. Then my heart broke into a bazillion little pieces.

Enter Dexcom. Even the first Dexcom CGMs were the bomb. Dexcom made my kids safer. Granted the early devices didn’t connect with bluetooth on their phones and they couldn’t share their numbers with me but it was a start. Dexcom is all about innovation and improving the lives of people and children with diabetes and by default improving my life as a parent of children with diabetes.

The most recent Dexcom device is the Dexcom G5. No longer do my kids have to carry a special receiver. Their numbers go directly to their iPhones and then the numbers are shared remotely with me on my phone. I can always know their numbers and sometimes my adult friends who use Dexcom G5 share their numbers with me too, especially if they are traveling alone and want a safety net.

So this last July while at Children With Diabetes Friends for Life my teens met other teens and had the best week ever. One of those teens became close with my oldest child and my daughter decided to share her Dexcom G5 numbers with him. That means he always knows her number and receives alerts if she is going dangerously low. At the time I thought it was sweet. I loved that she had a friend she could trust and confide in and count on.

I don’t require my kids to share their numbers with me although they do. That is to say I don’t provide consequences if they don’t share but sharing is highly encouraged.

Some teens might be concerned that sharing constant numbers with their parents would increase the “nagging” or micromanaging. I haven’t found that to be true with my kids but it is a common concern of teens with CGMs. <<<<this is important because maybe your teen won’t wear a Dexcom G5 because they don’t want a parent always watching, but what if they would wear it if say instead of a parent (or in my case in addition to) another friend received the numbers and low blood sugar alerts? That friend doesn’t have to have diabetes. It can be a Bff that doesn’t know the first thing about diabetes but would happily be a safety net for their best friend.

So anyway – my daughter shares her Dexcom numbers with this new FFL friend, who incidentally lives an entire continent away – 3000 miles. This friend would occasionally see low blood sugar alerts and text my daughter to be sure she is doing something about it. That’s cool and helpful. Less nagging from me.

A few weeks ago I went to bed with my phone on silent unknowingly.

The next morning I saw a number of notifications from Dexcom on my phone. A quick glance at my daughters Dexcom graph showed me that around 3am she had dipped below 30.

I didn’t know. I didn’t hear an alert since my phone was silenced.

The Dexcom graph showed that she was in a safe range at the time I woke up. Thank goodness but what about the middle of the night? Did she wake up and treat? Did her body release enough glucagon naturally to keep her safe?

No.

She didn’t wake up to her multiple low alarms. Her body was likely frantically pushing natural glucagon but probably not enough to keep her safe or alive.

It was her friend.

Her friend 3000 miles away heard the alarms at 3am alerting to my daughters severe low blood sugar. The Dexcom didn’t even give a number just “Low Glucose”.

This friend called my daughter no less than a dozen times until she woke up and treated the low.

This friend may have saved my daughter’s life.

Dexcom is the only CGM that allows blood sugars to be shared between devices across continents and around the world.

I may very likely owe my daughter’s life to a teenager and Dexcom.

Am I being dramatic?

Yes.

But is it warranted?

Yes.

I do not work for, get paid by, and I wasn’t asked by Dexcom to share this story.

I am sharing it because I believe in Dexcom, I believe in the power of friendships, and I believe that sometimes as parents we should consider the best ways to keep our kids safe while allowing them the freedom they so desperately desire. If your child is not enthusiastic about using a CGM that would broadcast his/her numbers 24/7 to you consider compromising by inviting them to find a friend to share with. There are also settings on the Dexcom application that your child can set which limits the visibility of numbers to those he/she shares with. For example the application can be set to hide graphs and numbers but send alerts for lows or extreme highs.

Talk to your child about using Dexcom and how it opens doors for increased freedom and peace of mind while also improving diabetes care, including less blood sugar checks.

oh – and after that event I made sure that my daughters friend had contact numbers for me in case he is unable to reach her.

It really does take a village to raise a child. Sometimes that village extends over 3000 miles.

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My daughter (blue hair) with some of her FFL including the young man who caught the low. Incidentally they are wrapped in blankets provided by Dexcom at the family movie night. Literally wrapped in the warm fuzzies Dexcom CGM provides.

 

Wordless Wednesday

 

 

No it’s not really wordless – thats really to high an expectation for my wordy brain.

IMG_2134Its been 9 days since we returned from our trip to Florida for the Friends For Life conference and family time at Universal Studios/Harry Potter World. I’m still experiencing some withdrawals. I miss my friends terribly and I miss Butter Beer. (don’t judge its awesome).

I miss all the hugs. I didn’t count but I would bet I gave and received well over 100 hugs.

I had met a number of the folks I spent time with previously but there were a few that I had not met in real life prior to the trip and I didn’t realize how much I would miss them when I got home. It doesn’t make me sad to miss them, it makes me realize how easily it is to love others so deeply. I am feeling very blessed to know them.

Last night while tucking in my littlest he told me how much he likes one of them too as he held a new gift in his hand (received in the mail earlier yesterday). He fell asleep smiling and my heart was full.

This will be my last post about FFL (aside from a green bracelet post that isn’t really about FFL). For all those out there who haven’t attended FFL yet. I know it’s expensive (the traveling part and hotel part and lost time at work) but if you can pick a year and plan for it – you won’t regret it. There are also scholarships available for both families and individuals via Diabetes Scholars Foundation. If you have been and have the means maybe consider supporting the DSF to help get others to the conference.

Thank you everyone who hugged me. I still feel the love. 

A HUGE thank you to my dear husband – he made the trip possible. He doesn’t get over here to read my blog very often – doesn’t really have to because I’m always babbling at him about the same stuff. Still if y’all have him in any other social media – maybe tell him he’s awesome.

 

Learning, Loving, Laughing & Tears

Our family just spent a week in Orlando at the Children With Diabetes Friends For Life conference. I have so much to share; things I learned, things that made me laugh, things that made me cry, things that made me go hmmm?.

Where does one start? I’ve read over a dozen wonderful recaps. Many of the recaps made me teary-eyed, a couple made me down right cry, some made me giggle and some made me want a complete do-over since I clearly missed sessions I should have attended.

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Meri, Sara, Me, Brian – sadly Briley is not pictured.

I started the conference by working the You Can Do This booth in the exhibit hall. I hope everyone got over there to share their thoughts and be a part of the project. I loved meeting so many people who came to the booth and working with some of my most favorite DOC members. Thank you Sara & Kim for letting me be a part of it this year. I’m told the 2013 video will be up shortly but until then please check out the 2012 video.

I suck at note taking – turning this:

notesphotoInto something that will make sense to you requires more organization than I am capable of – yet I’ll try.

Things I learned:

Dr. Bob and Natelli Bellini hosted a Stress management session on Thursday afternoon. It was an amazing session and I couldn’t scribble notes fast enough.

  • Own your stress – sometimes its just life, sometimes it just is.
  • We are often told to change our perception but that isn’t as easy as it sounds – it can lead to being stuck in the future or in the past. Focusing on the right NOW and how we can change a circumstance with adaptation, knowledge and seeking additional knowledge is more effective than simply trying to change how we see things.
  • Recognize that no parent is right all the time – says Natelli (shhh don’t tell my kids) I jest – but I need to remember that I’m not right all the time and sometimes I learn from my kids and there is always something I can learn from others.
  • “Just get the numbers” Getting teens with diabetes to check their sugars as often as they should can be difficult. Find your child’s currency and use it to get the numbers. (phone is the best currency for most – tough love with diabetes)
  • “I don’t care how they feel – I care that they do it” Says Natelli – We all know that diabetes is annoying and time-consuming but getting the numbers is the key so while the kids are frustrated with diabetes it is equally if not more important to get the numbers than worry about how they feel about it all the time. (I agree and disagree at the same time – there has to be some happy medium – a way to get the numbers while being able to recognize and empathize.)
  • “Dont suffer from diabetes” Natelli – followed up with words from Dr. Bob “suffering comes from the attachment of an outcome” Remove the expectations and that will limit suffering.
  • There are a bazillion websites that offer medical advice. Be sure the site you go to has safe information – look for the HONcode which focuses on the reliability and credibility of information. Looks like this one found on the CWD website.
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Even if a website has this HONcode – please still check with your HCP before making changes to your diabetes management plan.

To end the session Dr. Bob had us all close our eyes, take a deep breath and feel the community around us. That was powerful. 

I attended another Stress management session with Dr. Bob on Friday. His session was more about Mindfulness and living in the moment – plus lots and lots of breathing. I didn’t know I had been breathing all wrong. We did some meditation (almost fell asleep – but Dr. Bob said that its ok to fall asleep because at that time sleep is what you need). Books Dr. Bob recommended included:

Wherever You Go, There You Are by Jon Kabat

Mindfulness For Beginners by Jon Kabat

A fellow attendee recommended this book:

The Buddha Walks Into A Bar…A Guide To Life for a New Generation by Lodro Rinzler

Also in this session a friend I was sitting with asked a question. All kind of emotions exploded into the question – the question had many parts and one of them included “how to avoid losing my shit” (paraphrased). Dr. Bob came right to my friend. He spoke to her like she was the only person in the room, one hundred percent of his attention was with her and I felt like I was right there too, not just because I was sitting next to her but because I think so many of us have the same questions and fears about loosing our shit. While Dr. Bob was talking he kept saying “loosing your shit, expel the shit, there’s a lot of shit, shit, shit, shit, etc.” It was the best. He was able to recognize what was needed and provided it. At least I felt like that and I hope my friend did too.

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random photo to break up all my rambling text – Banquet Ball on Thursday with two beautiful ladies and my amazing Sweetstuff – this photo almost makes my heart explode.

The Moms discussion group was fabulous and the time went too fast. I wanted to hear more moms share stories and ask and answer more questions. I wanted us all to hug and laugh and cry together. I loved that Moria came in about half way though and shared her thoughts about being part of the “Yes club” – let the kids do their stuff. Mistakes will happen – let them. She did say that the one thing she insisted on was a blood sugar check before driving. TRUTH! I loved hearing CWD faculty member, Intissar Ben Halim, share her thoughts about how the teen brain frontal lobe gray matter is a big-ol-mess. (no she didn’t say ‘big-ol-mess’ but I suck at notes and so I’m taking a number of liberties in regards to how she said teen brains develop). The session was too short. I didn’t want it to end – although the conversations were wonderful it was more that I was in a room with 40+ other moms that were just like me.

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another random photo to break up all the darn text – This is Sweetstuff with Will Cross – mountaineer and explorer extraordinaire

I didn’t get to as many break-out sessions as I would have liked. I got distracted with awesome conversations in hallways and in the exhibit hall. I would so love for CWD to videotape all the sessions and then figure out a way to share them, at least with those that were in attendance – it sure would make my lack of note taking less frustrating.

The exhibit hall is a favorite for all attendees. I let my kids explore on their own opening night while I hung at the YCDT booth. They were like little scavengers gathering up goodies (SWAG – not the scientific kind – the holy cow how am I gonna get all this home kind) – I think my youngest collected about a dozen silly putty eggs from the A1C Champions booth, all three got backpacks with sleeping bags and carb free snow-cones from Nova Nordisk, each got a mini-Lenny from Medtronic, sunglasses and spy-photos from OneTouch, Glucolift glucose tabs and photos from the photobooth presented by Tandem, popcorn from The Diabetes Scholars Foundation, t-shirts including my favorite from A Mile In My Shoes – a company founded by Joe Solowiejczyk, really great bags from Freestyle (these were instrumental in getting all the SWAG home), and light-up pens from Omnipod.  Yes I included links to the companies that provided all the SWAG – thank you to all the sponsors that help make CWDFFL possible.

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last photo – promise – but darn it there is just so much text – better than some random cat picture. Sugarboy getting is caricature on – sponsored by Nova Nordisk – they did me but I swear I looked like Fran from the Nanny – it didn’t make it home.

Other posts about Friends For Life 2013 – If the following posts don’t make you want to start packing for 2014 I don’t know what will – I mean aside from being surrounded by 3500 of your closest friends, the top researchers and medical professionals in the country, food with lists of all the carb counts, the hot sticky weather of Florida in July (wait is that plus?), opportunities to meet some of your favorite diabetes bloggers and authors as well as a few celebrities living well with diabetes.

Joanne – Death of a Pancreas ( I didn’t include a link to just one post – she has written at least 3 about FFL)

Moria – Despite Diabetes

Meri – Our Diabetic Life 

Katy – Big Foot Child Have Diabetes

Briley – indpendence

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ok this is the last picture – tween and teen dance night. no parents allowed. It was fabulous.

I have two other posts working in regards to the conference but when I try writing them I get very tongue-tied and overly emotional. This was the easy post – the one about learning and getting SWAG.  The other posts are about DOC heroes and about the green bracelet – the one that is still in pristine condition and hidden in the large yellow envelope 4 inches from me.

Shout out to Stephanie

I just had the best conversation with Stephanie who works for Universal Studios Online ticket sales in Orlando.

I am trying to move Heaven and Earth to get my family to the Friends for Life Children with Diabetes conference in Orlando this July.

We had attended the conference in 07, 08, and 09. Finances and life prevented us from attending since 2009. Now we are in CA and the cost of attending has doubled since we can no longer drive to the conference like we had when living in TX.

For me the conference is reason enough to hop a flight from San Fran to Orlando. It is also enough for my daughter and youngest son – both who have Type 1. However, while my husband enjoyed the conference in the past, the costs associated with traveling from CA to Orlando FL are a bit overwhelming. Thus – we are playing the Harry Potter card.

Harry Potter World at Universal Studios opened in 2010. We have been promising the kids a trip to the park for a number of years but again finances have gotten in the way.

Ive been researching airfares, hotels, rental cars and theme park tickets all morning.

I love the Coronado Springs Resort at Disney (the location of this years Friends for Life conference), however due to costs I had been researching other hotels as well. In addition to researching transportation options from Disney to Universal or Universal to Disney.

I had read online that if one were to purchase a 2 day Universal park hopper ticket that transpiration from Disney could be included – thus a call to the Universal Studios Online Ticket sales.

Stephanie answered my call. Unfortunately there is no free transportation from Disney to the Universal parks. Still I’m chit-chatty so I was brainstorming with Stephanie about transportation and vacation packages as well as programs available at Universal Parks for people covered by the American With Disabilities Act – those of you in the D know – know what I am talking about. Of course during that part of the conversation I shared about the conference and the options Disney has for those with special needs.

During that part of our chit-chat Stephanie shared that her husband of 22 years has had Type 1 since he was 9. WOW – such a small world.

We talked about scary lows, checking blood sugars before bed (Stephanie cracked me up when she said sometimes she will choose the blue icing to treat her husbands lows in the middle of the night – there will be evidence), how MDI has worked well for her husband, and scare tissue from using the same body real-estate for shots. And since not everything is D related we also chatted about Harry Potter and Lord of The Rings – clearly Stephanie and I could end up as great friends because she speaks my language.

Of course I shared how great Friends for Life is and encouraged her to register her family to attend – they live very close to Disney so it is totally doable.

Stephanie – if you are reading this – I thoroughly enjoyed our chit-chat and I do hope that both our families can attend Friends for Life this year. Please shoot me an email if you will be attending so we can meet.

(Yes I told Stephanie my blog name – not to plug my blog but because I wanted her to have a way to let me know if her family would be attending)

Now back to more research to find deals that will get my family to the happiest place on earth.

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From Inside It’s a Bugs Life in 2009 Friends For Life

Universal Studios Friends for Life 2008

Universal Studios Friends for Life 2008

Magic Kingdom Friends for Life 2007 - BTW Sugarboy was a little high when we took this picture - thus unhappy.

Magic Kingdom Friends for Life 2007 – BTW Sugarboy was a little high when we took this picture – thus unhappy.

Freedom

This is my first remote post – meaning I am not sitting in my own desk chair with a dog curled up at my feet. I am currently sitting at a place called Main Event. It’s an arcade, pool hall, bowling alley, rock gym, laser tag place. It is a fantastically wonderful magical place!

On Monday nights there is a special it’s called Monday Night Madness. For only $20 a kid they get to do unlimited rock climbing, bowling, laser tag, mini glow golf, and video games galore. It starts at 4pm and ends at closing which is something crazy like 2am (btw there is a full bar too).  The latest we’ve stayed is midnight – since we are here by 4pm that is 8 hours of fun for them and quiet time for me (even with todays pop 40 blaring from the bowling lanes).

The kids check in every 30 minutes or so to grab some cheese fries, sip some water or if I’m lucky sneak in a hug and tell me how awesome of a mom I am for bringing them to Main Event – if they only knew it was more about me than them. (ok maybe equal me and them).

Tonight I have so much to catch up on. So many DOCers (people involved in the diabetes online community) have returned from the Children with Diabetes Friends for Life conference with stories to tell. My family couldn’t attend this year so I was living through them – all the tweets with quotable moments from different conference sessions were fantastic.

Here are a few FFL posts I have enjoyed so far:

Karen at Bittersweet Diabetes 

Kerri at Six Until Me 

Scott Strange at Strangely Diabetic

Another great one from Scott 

Jess at Me and D

Shay at Just Same Changes

Allison at Diabetes Mine

Meri at Our Diabetic Life

Martin at Diabetically Speaking

Kate at Tenaciously Sweet 

Kelly at Diabetesaliciousness

This is all I’ve read so far – I’m certain more will be posted soon and there may be dozen’s I just haven’t gotten to yet.

Back in April during the Health Activists Writer’s Challenge Month there was prompt that asked if I titled my posts before I wrote or if I titled them after. Normally I title them before because I have a specific thing I plan to write about. For this post I titled it “Freedom” because I had intended on writing about the fact that I dropped my Sweetstuff off at the movies without me – first time. I wasn’t worried about diabetes – I was more worried about her talking to strangers. It was great allowing her the freedom to grow up a bit and not worry about diabetes.

I was also going to write about the freedom a place like Main Event allows me to relax while knowing my kids are safe and entertained. I did touch on that but then I went a different direction – I shared posts regarding the Friends for Life conference. I was contemplating a change in title but realized it isn’t necessary. I haven’t been at the FFL conference since 2009 – but I do remember the sense of freedom I felt after each conference. Freedom to raise strong, healthy, amazing children with diabetes. The freedom to talk about diabetes, the freedom to admit that I do get overwhelmed, I do get sad, I do get very angry and freedom to admit I make mistakes and need help.

No title change necessary – I hope you check out the blog posts I’ve shared and find more and might share them with me in case I have missed them.

 

 

Friends For Life

Friends 4 Life

Sugarboy was dxd in Feb of 2007. During the week post diagnoses during my nightly searches for information about Type 1 diabetes I found the  Children With Diabetes website and a link to the Annual  Friends 4 Life conference held in Orlando each July. I didn’t hesitate to register our family for the conference in July – finances be damned we were going to go.

It was by far the best experience ever. So wonderful that we returned for 2008 and 2009. I met some of the most amazing people during those trips including the DOCs very own Bennet (who I may or  may not have shared drinks with next to the pool at Disney’s Coronado Springs resort) not knowing what a great man I was visiting with at the time.

The breakout sessions were all fabulous – one of my favorites was always Joe Solowiejczyk – the man is simply hilarious. The food, exhibits, and events were all equally amazing. However the thing about FFL is the connections. Being surrounded by 4000 of my closest friends (simply because they KNOW) is what makes FFL so wonderful.

Due to finances and schedules our family was unable to attend FFL in 2010 and 2011. We have been diligently planning to attend the 2012 FFL come hell or high water (remind me to look up where that phrase came from). But here we are in the midst of selling our home in TX buying a home in CA and of course the big move. The idea of being able to attend FFL is feeling more and more hopeless. With hubby working a new job and all the house crud I don’t see how we will pull it off. It is making me sad – which in its self sad since I spent the morning feeling so blessed to have met (albeit via cyberspace) so many amazing pwd and parents of cwd. I think the combination of feeling so blessed combined with the knowledge that many of those same peeps will be in one place at the same time (FFL) and I likely won’t be – is what is likely bringing me down.

Maybe keep your fingers crossed for us that we get an early offer on our home and can relax a bit and take a break to visit some friends all 4K of them (maybe sneak in a visit to Harry Potter World too). I won’t ask for prayers since this is not prayer worthy but crossing a couple fingers seems fitting.

Again – not whining – just hoping – still recognizing how blessed we are as a family and if not attending a conference in Orlando is my biggest woe than life has treated me better than well.