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Category Archives: For the Newly Diagnosed

4 Years Is Enough Time to Make A Difference

Today, December 20 2014, marks four years since my daughter was diagnosed with type one diabetes. Oh how far we’ve come! And oh what we have learned!

For those of you whose children are newly diagnosed and even those still struggling after years, let me share my daughter’s experience.

2,103,796 minutes

2,103,796 minutes

In 2010, she was a daughter, a sister, a granddaughter, a niece, a cousin, a student, a friend, a leader.  Also, an athlete, a straight A student, a musician…and a pre-teen. And as I look at the picture on the left, I see she was thin and tired.

In 2014, she is a daughter, a sister, a granddaughter, a niece, a cousin, a student, a friend, a leader.  Also, an athlete, a straight A Honor student, a musician….and a high school freshman…and an advocate. And this year’s picture, shows a happy, vibrant, healthy young woman.

Is she perfect?  No.  She has been known to forget to bolus for lunch.  She has walked out the door without test strips.  She has underbolused and overbolused.  She is guilty of the “sigh-roll”–the combination eye roll with sigh for emphasis so many teens are guilty of doing.  She thinks I am a “diabetes dork” for doing awareness activities in November.

But her endo is happy with her a1cs.  Her dietitian is happy with her eating habits.  Her teachers are happy with her in-school management of her Type 1.  I am happy that she is a good kid who is confident of who she is and true to her values. I am proud that she has been in charge of each of our four JDRF walk teams..she sets up the page, she sends out the emails, she hounds people over and over which has led to her getting a Golden Sneaker each year and raising almost $20,000 so far.  Diabetes is a part of who she is but it does not define her.

So here is what I would tell the mom I was 4 years ago, if I could:

1. It is only a number; correct and move on. Do not take bg numbers personally. You can eat exactly the same things at the same time each day and still have wonky numbers.

2. When faced with an opportunity for your child to do something, ask yourself “what would I say if diabetes wasn’t in the picture?” If the answer is yes, make a plan. Find a way.

3. Be an example to your child while still following their lead. Kids are naturally resilient–they are ready to get back to living their lives, albeit now with external insulin on board, much more quickly than we parents are. The more we encourage and allow them to be kids, the better our chances that when they do rebel, the rebellion will be minor and short-lived.  Don’t let “What’s your bg?” be the first question you ask your child when they get home from school each day.

4. Keep Calm and Carry On isn’t just a catch phrase. Don’t freak out about D things in front of your child, or where your child can overhear (or read over your shoulder). But I admit, I still gasp when my daughter’s pump falls off her waist band.

5. Your child will still be the same person after diagnosis. Overachievers will still overachieve. The lazy kids will still be lazy. Drama queens will still be drama queens. Laid back kids will still be laid back. IF you let them. (Go back to #2) Sure the pre-teen and teen years shake that up…but they do for ALL kids.

6. Diabetes is not the reason for everything that happens. Look at the whole child and not just diabetes.

7.  Don’t let technology dominate you.  She was approved for a cgm and pump 3 months after diagnosis.  These are wonderful tools—use them to make life easier, more normal–not to try to chase a flat line bg every day.  Let your child use the cgm data to confirm what their bodies are telling them.  If my daughter thinks she feels low, she looks at cgm–if the cgm confirms her feelings, she goes ahead and treats the low.  A bag of fruit snacks is not going to kill her.  If her feelings and cgm don’t match, then she confirms with bg check.  If the cgm alerts that a high is coming on, she starts drinking water to help flush out the sugars and prevent ketones.  She has learned about meal spikes and not to treat them.  But she is not looking at the cgm all the time.  She trusts it to do its job and she trusts herself to know her body.

8.  When you are having a day with diabetes is weighing heavily on you, look at those who are living with it and succeeding.  Surround yourself with positive images and remove yourself from places where negativity dwells.  It isn’t always easy to do, but you will be happier and healthier for it.

9.  Get involved in advocacy, even if your kid calls you a “diabetes dork” for doing so.  Find your niche.

10.  Don’t forget to take care of yourself.  Marriages and other children sometimes suffer because we focus so much on diabetes.

 

We can do this…because we MUST do this.  The true test of our character is not how we handle things when life is easy, but how we manage the challenges.

 

Happy 4th Diaversary to my lovely daughter!

 

I am More….

The world is a all a twitter with news that Miss Idaho wore her insulin pump during the bathing suit competition. And we in the DOC are so proud of her for winning the competition and bringing Type 1 diabetes to the forefront.

But at the same time, it appears the message is lost because of a single photo. And God Bless Sierra Sandison for writing this blog post:  http://missidahoorg.blogspot.com/2014/07/i-am-more-one-of-themost-touching.html

In it,  she explains how thrilled she is to have touched so many, but wants us all to remember that we are so much more than whatever burden we bear in this life.  She has asked people with T1 D to not only #showmeyourpump but also share who you are as a person.

 

So here is my pumper

...show off her insulin pump

…when she started pumping

 

And now….

all grown  up

 

 

Still wearing her pump…sometimes it shows and sometimes it doesn’t.

 

So who is she besides a girl with a pump?

  • a daughter
  • a sister
  • a granddaughter
  • a cousin
  • a loyal friend
  • a singer
  • an actress
  • a musician
  • a volleyball player
  • a tennis player
  • a student
  • a person of Faith

And what has she done since becoming a pumper?

  • Made it to the regional science fair TWICE
  • taken the ACT as a 7th grader
  • led her volleyball team to a tournament championship
  • been named MVP and All League for volleyball
  • played 8 seasons of volleyball
  • attended volleyball and acting camps
  • been student council treasurer
  • sung numerous solos and duets/trios for school and church
  • maintained straight A’s
  • qualified for all honors courses in high school
  • raised thousands of dollars for JDRF
  • seen Luke Bryan, Lee Brice, Cole Swindell, Billy Currington, Kacey Musgraves, Lady Antebellum, and Josh Turner in concert (going to see Jason Aldean and Florida Georgia Line next)
  • met the actress Maddi Trumble, who played Mary Poppins in the National Tour and got to go backstage
  • traveled to Nashville, Walt Disney World, and the Bahamas
  • taken part in a clinical trial of the Artificial Pancreas
  • been Superhero of the month by her local JDRF chapter
  • been part of a story in Insulin Nation
  • volunteered as a counselor at Vacation Bible School
  • raised money for Ovarian Cancer
  • made money as a dogsitter
  •  learned how to sew
  • ….and so much more!

Thank you Sierra Sandison for being more than a person who wears a pump! And cheers to all who are more than they appear to be!

 

#HAWMC Day 28 The Best of the DOC Blogs

I find it very hard to determine which Type 1 diabetes blogs are best….because different blogs reach out to different audiences. There are great blogs written by moms of little girls with Type 1 for example, but would the mom of a 17 year old boy find that the most helpful? Probably not. So in the interest of sharing so many of the good resources in the DOC I am linking again to my previous post that categorizes some of my favorite blogs so people can find blogs that fit their particular situation. All have something wonderful to say and are worth checking out…but sometimes a person needs to connect to someone whose journey is more similar!

Navigating the DOC

Here’s a screen shot of the post:

doc1 doc2

#HAWMC Day 14: A Shout Out to the Best of the DOC

wego day 14

I’ve written in the past about some of the best on-line resources I’ve found in my 2 1/2 years as the mom of a PWD  which you can find here.

But today I want to give a shout out to three in particular.

Kerri Sperling’s Six Until Me was the first blog I found as I was searching the internet in the early days of KC’s diagnosis…up till all hours, passing time to the next bg check.  Kerri gives me hope for KC’s future.  A rich, full adult life is possible!

Next, I stumbled upon The Princess and The Pump.  Reading Sweets’ story and her mother’s struggles let me know that I am not alone…Her blog led me to her Facebook page and to the wonderful support of the DOC.  I learned that at 3 in the morning  some other d-mom or d-dad is also up.  Once you’ve connected with a few FB d-parents or support pages, all you have to do is post your child’s BG in the middle of the night, and someone else will chime in…

And last, but definitely not least,  are Moira McCarthy Stanford and her daughter (and my Gamma Phi Beta sister!) Lauren the forces behind Despite Diabetes.  World Diabetes Day and the WDD Postcard exchange connected me to Moira.  She was my postcard pal this past year. After receiving her name, I did a quick Facebook search and there she was!  I treasure her wisdom and wit more than words can say.

Thanks to these amazing women of all ages and stages of the T1 journey!

#HAWMC Day 2: Help for Parents of Kids Newly Diagnosed with Type 1 Diabetes

wegoday2Hearing the words “Your child has Type 1 diabetes” is terrifying and overwhelming. You have so much too learn in a short amount of time. You wonder how on earth you will be able to do everything you need to do to keep your child safe and healthy. I assure you that you will learn…and you will make mistakes….and some days will be good and some days will be bad. Don’t be afraid to ask for help…from your local community, from your doctors, and yes, from the DOC. We are here to share what we’ve learned. And we are often up in the middle of the night when you need us most.

Here are links to some of my past posts that may be the most helpful right after diagnosis:

What I Wish I Knew A Year Ago   Lots of advice, tips, and links to help.

Trick or Treat?  Halloween and T1DM Yes, your child can still have candy!  Great carb chart for most popular candies is attached to this post.

The Great Sleepover Debate  Sleepovers don’t have to end when a child develops Type 1 diabetes.

Navigating the D O C…..

Navigating the D O C…..

Recently, I have connected with a number of families of newly diagnosed T1 kiddos. Each newby breaks my heart….it’s like the scab is ripped off again. I remember that feeling of being overwhelmed. Late nights, surfing the internet looking for something….

And I found a wonderful world of amazing families who are facing the same struggles we face. Families that know just how it feels to be battling the beast that is Type 1 diabetes. Each wonderful blog lists a roll of blogs they follow or suggest, which is really helpful. But I’ve come to realize that it can be hard to find the right blog. While I love reading blogs of the d-mamas with the little ones, and we do share so many of the same emotions, we aren’t at the same stages of development. For example, I have no idea how to potty train a toddler using an insulin pump and a d-mama of a toddler doesn’t know how teen hormones can affect bg. So I sat down and started listing some of my favorites and categorized them. I hope this will help people find blogs they can connect with or that can address specific areas of concern.  If you have suggestions of blogs to add, please let me know!

Parenting children 10 and under with Type 1

The Princess and The Pump   mom of daughter dx’d 2009 age 3

Virginia Beach Duck Family  mom of daughter dx’d 2010 age 4 1/2

D-Mom Blog:  The Sweet Life With A Diabetic Child mom of daughter dx’d 2008 at age 3

Bigfoot Child Have Diabetes mom of son dx’d 2011 at age 8

Arden’s Day dad of daughter dx’d 2006 at 2 years old

Parenting pre-teens/Teens with Type 1

Despite Diabetes  mom of daughter dx’d 1997 at age 6

Don’t Call Me Sugar parents of daughter dx’d 2010 at age 10

KC & Company mom of daughter dx’d 2010 at age 10

Parenting/Living with Multiple T1’s

Our Diabetic Life  mom of 4 sons 3 of whom are T1 dx’d at ages 8 months, 5 1/2 years, and 2 1/2 years old (now 14, 10, and 8 respectively)

Daddybetes  dad of daughter dx’d 1997 at 18 months old; his wife is a T1 as is her father, grandfather and brother.

Parenting Diabetic Kids  parents of a daughter dx’d 2005 at age 4 and son, dx’d in 2007 at age 6

D-Dads

Diabetes Dad  dad of daughter dx’d in 1992 at 2 years old and son, dx’d 2009 at age 13

Daddybetes  dad of daughter dx’d 1997 at 18 months old; his wife is a T1 as is her father, grandfather and brother.

Arden’s Day dad of daughter dx’d 2006 at 2 years old

Adult living with Type 1

Bitter-sweet diabetes  dx 1979 at age 11

Six Until Me dx 1986 at age 6

Teens/Young Adult T1 Bloggers:

Big Heart, Bigger Choices Follow college student Taylor (dx’d 1997) as she pursues a nursing degree

Something Sweet and Special

Family with Diabetes Alert Dog  Journey into Type  1

Jewelry designed by Type 1 Rachel, Proceeds go to JDRF. Rachel’s Cure By Design

PJ’s For A Cure

Mom of two T1’s designs and sells a pump pouches at My Own Style Pack

Great Etsy store and Type 1 Tuesday blog by a D-mama of a daughter dx’d 2011 at age 5  One Happy Mama

“Be Prepared”

As I sit here keeping my eye on the storm that is battering my part of the country right now, I can’t help but worry about power outages, trees going down, and the other types of damage that can occur when Mother Nature’s wrath is unleashed. Like some of you, I have the necessary emergency supplies….scattered all over my house, which is being remedied as this is being written.

Since KC was dx’d with T1DM, emergency preparedness has taking on new importance. It is no longer just about having flashlights, batteries etc. Because those ordinary items won’t help KC if the power goes out….and the fridge loses power…and insulin spoils. I go into a panic every time we lose power…and have taken measures to protect her source of life. First, we keep her insulin in a plastic box in a mini-fridge so it is easy to grab. Second, I purchased a fridge thermometer so I know if the insulin in at a safe temperature. Third, our latest precaution is the purchase of a Duracell Powersource 1800 generator to power the mini fridge in the event of an outage.  We have also added a solar powered cell-phone charger to our supply kit.  Hurricane Sandy, and what my D-Mama friends in New Jersey and New York went through, woke me up.

Below is a Ready Kit checklist our local Emergency Management Agency supplied as well as pdfs of the emergency wallet card they recommend. readykit checklist

ICE wallet card 1 front 

ICE wallet card back

Get Ready Knoxville Worksheet

Parents of T1DM’s have more to add to the list such as, extras of every pump supply they have, extra cgm supplies, the sick box/bag, rubbing alcohol, juice boxes, glucose tabs etc.

Take the time now to gather necessary items.  Be prepared and stay safe!