THE STORY OF ONE FAMILY'S JOURNEY WITH TYPE 1 DIABETES AND CELIAC DISEASE.
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Friday, July 13, 2012

Real Life.

Just about 7 years ago, I watched as my 2 year old daughter was loaded into the back of a helicopter for transport to the PICU.  I can remember the pounding in my chest as my wobbly legs tried not to buckle.  I strained to see the curls on her little head before the door slammed close to prepare for take off.  I could feel the baby inside my tummy nudging around, and I wondered if I was actually capable of being anyone's mother at all, let alone a child with diabetes.


It was a raw, helpless moment.  


And it was very, very real.


Weeks turned into months, and I wondered if I was the only mother of a child with diabetes who had no idea what she was doing.  I felt as if my CWD had drawn the short straw for life or something, because her mother couldn't seem to get her act together.  Every forum I scoured was filled with happy-go-lucky parents who spoke lightheartedly about beautiful A1c's and the day-to-day management of this disease.  Meanwhile, my heart was heavy.  I worried that my daughter's fate of a life with horrible complications had already been sealed, because I couldn't make any sense of her numbers, and she had experienced far too many "bad lows" for a rapidly growing brain to withstand.


Dramatic much?  Perhaps.


That's when I started reading blogs.  I lurked and hopped from one blog to the next.  At the time, there seemed to only be a handful of blogs about life with T1D, and most of them were authored by adults who had grown up with diabetes.  Their stories helped me realize that I wasn't crazy.  Managing this beast is a relentless grind, and even the most seasoned veteran can have ruts of frustration.


It's real life.


Even still, as a parent, I was having a hard time finding other parents I could connect with on a deeper level.  I had found an entire network of amazing adults with T1, from which I was able to learn and draw inspiration from, but none of them could relate to the challenges I faced, as a mother trying to manage a growing CWD using current technology.  Insulins that peak faster and pumps that can lead to DKA quickly if something goes wrong with the site.  An insulin sensitivity factor that stayed above 250 for years, pre-bolusing a picky eater, trouble shooting patterns, birthday parties, and figuring out how to send all this hoopla to school.


Everywhere I turned parents who had already raised their CWDs were telling me to "lighten up", "let go", and "let her be a kid"...as though I wasn't already trying my darndest to do just that!  But no one seemed to be able to offer any practical suggestions, because they hadn't ever managed a 3 year old using rapid acting insulin in an insulin pump.  They could relate to being a parent of a CWD, but couldn't relate to many of the modern day challenges I faced, because their parenting experiences reflected a different era of technology.  I don't mean to suggest there was nothing to be gained from their insight, but deeper connections still seemed elusive.


And so I started blogging.


It has always been my goal to build relationships.  I have always wanted to learn more about the PEOPLE behind the stories.  I love to see pictures and snapshots from other people's lives, and I feel privileged when given the opportunity to read someone's transparent reflections about their journey.  I very much enjoy the friendships I've found through my blog, and tend to use Facebook as a way to keep up with my pals on an everyday basis.


My life is real.  Sometimes it's downright messy.  I have real emotions, and tend to care deeply about others.  It's not about page views or blog stats.  I'm not artificial or materialistic, and have no desire to make a million dollars off my daughter's busted pancreas.  (Well, unless, of course, that million dollars could be used to support programs such as Life For A Child.  I guess then I'd go for the gusto.)


Building relationships.  That's why I'm here.  That's why I started blogging.  I knew there were other mothers out there who were just like me.  It took some time, but eventually I started to find them...one by one, and I'm still finding them.  Along the way, I've found some heart-to-heart connections with PWDs that I'd consider irreplaceable, and I've been able to learn a thing or two from the parents who traveled this road before me.


This is real life.


So, anyway, when I had the opportunity to attend the Friends For Life Conference, it meant more to me than just attending sessions and gaining insight from renowned resources.  It meant real life hugs and conversations.  It meant introducing my girls to the children of people I've come to love as if we've known each other forever.  It meant strawberry-mint mojitas and laughter and deep breaths shared within a common bond of understanding.


I like to keep things real over here.  In the coming days, I'll be sharing more from FFL 2012, but felt like I needed to say this stuff first.


Thank you for sharing this journey with me.



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17 comments:

  1. Can I just tell you how big I'm smiling right now? And how much I wish one of those drinks were mine?!?

    Amen sister! I couldnt agree more! It's never been about fame or money - I write because it helps me cope and I keep writing because of the emails and new friends and love I've found doing so! Nothing fake here!

    Love you!!

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  2. You know how much I love you and I raise my Kim-purchased-Sara-enjoyed strawberry daiquiri to you! :)

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  3. Is it a bad thing if I say that you make me wish I were a drinker? LOL. Just kidding. It was AWESOME to meet you (and HUG you and see your pretty blue circle flower!!!). Love you, woman. LOVE YOU.

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  4. Holla! You rock, and meeting you IRL was one of the highlights of the trip for me!

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  5. I wish that you and I had had a moment to actually sit down and chat (other than sitting across the table from one another, faces squinched in frustration about the FDA process) to get to know each other on a real level. The week was so jam packed with great sessions and awesome people and I'm thankful for the IRL connections I was able to make.

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  6. Day in and day out, this life with D is gut wrenchingly real. It was amazing to be able to be real with real people for a few short days. Looking forward to more opportunities to raise a toast again!

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  7. i feel so lucky that by the time my kid was diagnosed there was more information and support out there. (out here). FFL is many things to many people, but i cherish the face to face moments the most.

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  8. Sounds like it was an incredible experience! I can definitely tell the difference between blogs that have an agenda and blogs that are real...I like hearing REAL stories about what we go through as parents of kids with diabetes, not ones that don't go in-depth about what they are going through. I blog because it's a connection, a release of stress. A CONNECTION. I can't imagine trying to make money off of this crazy disease.

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  9. *CLINK* to you my friend! I loved meeting you, your family and all the other D-Mamasons,D Papas, dkidlets & D Grownups at CWD.I loved the connection and the understanding and the love I felt & I miss you like a million & can't wait to see you in IRL again!
    YOU.ROCK.
    Kelly K

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  10. I'm so looking forward to reading posts about FFL. Wish I could've been there to meet everyone, too. For the record, it is very clear that you are REAL.

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  11. Yep, I agree of the handful of blogs I read I could definitely tell you were the REAL thing! Thanks for keeping it real so others like you, don't feel alone.

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  12. Wendy - It was awesome to finally meet you. Thanks for keeping it real. xo

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  13. I can't wait to read all about it, I loved seeing the FB posts from everyone there and I would love to go someday. I'm not a consistant blogger, but I love reading everyone's blogs and I there are some that I like better than others, mostly the ones that aren't making money and mostly the ones that keep it real, but also keep it light. I tend to get bogged down with my own "poor me's" so I love to see how everyone else is going thru the exact same sh*t as me!

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  14. Wendy! It's obvious you are real..but wish I could've met you there too! : ) Sounds wonderful. You can tell us all about it, and we can live it through you. ; ) Hugs, girl!

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  15. I can so relate to your comments about pumping with a 3 yr old and feeling alone. My oldest was 3 in 2002 when we started pumping. I didn't find the DOC until 2011 and it's really changed my approach to parenting my CWD. So glad to have found this wonderful community :) thanks for sharing your thoughts.

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  16. Oh I want to transport myself back there NOW!! These "mojito moments" were just as important as the educational sessions to me. And I'm so glad that my hubby got to meet my friends IRL too...sometimes he thinks I'm crazy with all my friends who live in my computer :)

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While I'm happy to share our experiences with what works, and what doesn't work, for the management of Type 1 Diabetes and Celiac Disease in our house, please do not mistake anything you read here for medical advice. Decisions regarding your/your child's health care should be made only with the assistance of your medical care team. Use any information from this blog at your own risk.