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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!

 

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#HAWMC Day 21 Adversity

“The flower that blooms in adversity is the rarest and most beautiful of all.” – Mulan

Today’s challenge is whether we believe that the quote from Mulan above, is true or false.  My initial reaction was to consider my son and daughter, both of whom face adversity because of their food allergy and Type 1 diabetes, respectively.  But I also began to wonder which flowers bloom the best under adverse conditions.  So I did a quick google search and came up with the Crown of Thorns…..and I thought….wow, here it is a Sunday morning and the symbolism of “crown of thorns’ is even more impactful for its association with Jesus Christ.  And I just finished watching a Rick Steves’ program about Edinburgh that described the St. Giles Cathedral with its ornate spire designed to look like the crown of thorns.  Another example of Baader-Meinhof Phenomenon, which occurs when a person, after having learned some (usually obscure) fact, word, phrase, or other item for the first time, encounters that item again, perhaps several times, shortly after having learned it.  I was just telling another T1 parent about this phenomenon the other day, as an explanation for why we seem to learn of so many other Type 1 diabetics after our own child’s diagnosis.  And I just remembered that my son watched Mulan in 2 classes this week–weird, huh?

So here I am in this surreal loop this morning….and am reminded of when I taught a class on archetypes and symbolism to high school students.  They fought against the concept of symbolism:  “Mrs. C, can’t a tree just be a tree?  How do you know it means anything else?”  And my response would be that if the tree were merely mentioned in passing, then yes, it was just a tree.  But if the writer drew your attention to that tree over and over again, then the tree was symbolic and therefore, had greater meaning.  Today, the “crown of thorns”  appears to have meaning for me.

And yes, I truly believe that survival against adversity makes one more beautiful…makes the victories that much sweeter….

crown of thorns

Have a blessed Sunday!

#HAWMC Day 16 True or False: What do you know about Type 1 Diabetes?

Which one of these statements about Type 1 diabetes is false:

1. Type 1 Diabetes is preventable.

2. The only difference between Type 1 and Type 2 is the age of onset of diabetes.

3. People With Type 1 diabetes cannot eat sweets.

4. Taking Insulin cures diabetes.

FALSE, FALSE, FALSE and FALSE!

1.  At this point in time Type 1 diabetes is not preventable.  It is believed to be an auto-immune related disease, where antibodies are kicked in to working by some virus and then begin  to attack the pancreas.  Research is being done in the UK on a vaccine.

2.  Adults and children alike can get either Type 1 or Type 2.  Age is not a factor.  There are many differences between the two diseases and calling them both “diabetes” has created confusion.

diabeteschart

3.  People with Type 1 diabetes are able to eat the same foods as the rest of the population.  All people should eat sweets and carbs in moderation.  Most doctors would prefer that people with Type 1 avoid “sugar-free” or artificially sweetened products as those may cause more problems that simple sugar.  A person with Type 1 diabetes needs to know the carb count of the foods they are eating, so that they may give them selves enough insulin to cover the carbs.

4.  And finally, insulin is not a cure.  It is a way to manage Type 1 diabetes, but a cure would mean that the person no longer has diabetes.

I know I was supposed to present 3 truths and 1 lie, but there are so many misconceptions about Type 1 diabetes that I couldn’t help myself.

#HAWMC Day 15 Can We Motivate the World With Happiness?

wego day 15

The always wonderful, wise, and witty Moira McCarthy Stanford hit it out of the park again.  Hopefully, you remember Moira from my shout out yesterday.  I didn’t plan on using one of her posts for today’s challenge, which is to comment on a blog post and ping back to that post.  But a funny thing happened on my way to write this response.  I was going through a list of d-blogs and checking each of them out.  I skipped Moira’s because I was trying to be an equal opportunity promoter.  Then up on Facebook popped her link to her most recent post “Can We Motivate the World With Happiness? (The One Where I Refuse To Be Sad All The Time)

First off, I am a crier by nature.  My mom always said “you cry at the blessing!”  And I do.  And at kindergarten performances even when I don’t know a single kid.  At every program my children have ever performed in.  At graduations.  At talent shows.  At pep rallies.  And yes, of course, at Hallmark commericals.

I cry when I’m sad.  I cry when I’m angry.  I cry when I’m happy.

My daughter recently created a video for a contest.  The theme is  Faith Hope & Love  KC wouldn’t let me watch the video with her because she said  “Mom, you will definitely cry!’  She is not a crier.  She lives life to the fullest–wrenching each moment from her days.  She is positive and hopeful.  Diabetes doesn’t  get her down.  Yes, the daily management is annoying.  Yes, it stinks to be high or low.  But LIFE is wonderful!  Like Moira’s daughter, Lauren, KC doesn’t really want to reach people out of sadness  and as you watch the video you will see smiles….lots and lots of smiles!  And HOPE!

But I did cry, and laugh, and smile.  And this morning, a non-d mom friend who is part of our JDRF walk team saw the video for the first time.  Her words:  “What a wonderful message and I especially enjoyed the smiles, even with all the struggles. Beautiful. Can we forward it to our friends when we ask for donations?”  So Moira you are absolutely right….we can motivate with smiles.

And KC is in the process of making another video to share with her classmates which shows just how much fun a JDRF walk can be.

….but I will probably still cry when I see it….tears of joy

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

My Wish

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Tomorrow is my birthday…a big one, but not a milestone. When I blow out my birthday candles, I will have so many wishes but the greatest is a wish for a cure for Type 1 and food allergies.

Last night, KC and I watched the movie “Letters to God” –a heartwrenching story of a young boy, dying of cancer, who encourages prayer by writing letters to God.  Painful to watch, especially in light of the death of Trey Erwin, the son of a friend of a friend, who lost his battle with pancreatic cancer this past Thursday.  Both the boy in the movie and Trey have shown a strength of faith that is truly awe-inspiring.  I try to have such faith.  But I must admit, I am still angry.  Yeah, I know, KC “only” has Type 1–” it could be worse.”  I am angry that ANY disease can kill a child, slowly or quickly.  No parent should have to bury a child.  I know I have to have faith that God has a purpose for KC–and her T1 is part of the purpose.  I accept that…I guess I still struggle with my purpose.

Four years ago, I was putting together a graduation video for the daughter of a friend–we used the song “My Wish” by Rascall Flatts.  I cried then…crying for the beauty of possibility.  Possibility–the beauty of the word struck me last night as I watched the credits of “Letters to God”  Possibility Productions.  The movie used “My Wish” as part of the soundtrack….I cried again.  This time because I realize that my wish for KC that ” her dreams stay big, and her worries stay small” has already been broken. She will always have the worry of her disease–and it isn’t a small worry.  When she treats it as a small worry, as she did this morning when she forgot to Bolus her breakfast, it can quickly become a huge worry.  I hate that her 12 year-old life already has such a big worry.  But as I reread these lyrics, I see that maybe my purpose is defined there….so that she  knows somebody loves her and wants the same things too.  Someone to support her every dream and tell her she can do it.

So for both my sweet children, my birthday wish this year and every year:

I hope the days come easy and the moments pass slow

And each road leads you where you want to go

And if you’re faced with the choice and you have to choose

I hope you choose the one that means the most to you
And if one door opens to another door closed

I hope you keep on walkin’ ‘til you find the window

If it’s cold outside, show the world the warmth of your smile

But more than anything, more than anything
My wish for you

Is that this life becomes all that you want it to

Your dreams stay big, your worries stay small

You never need to carry more than you can hold
And while you’re out there gettin’ where you’re gettin’ to

I hope you know somebody loves you

And wants the same things too

Yeah, this is my wish
I hope you never look back but you never forget

All the ones who love you and the place you left

I hope you always forgive and you never regret

And you help somebody every chance you get
Oh, you’d find God’s grace in every mistake

And always give more than you take

But more than anything, yeah more than anything
My wish for you

Is that this life becomes all that you want it to

Your dreams stay big, your worries stay small

You never need to carry more than you can hold
And while you’re out there gettin’ where you’re gettin’ to

I hope you know somebody loves you

And wants the same things too

Read more: RASCAL FLATTS – MY WISH LYRICS http://www.metrolyrics.com/my-wish-lyrics-rascal-flatts.html#ixzz208mxmhbp
Copied from MetroLyrics.com

Diabetes Blog Week Day #6: Saturday Snapshots

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What can a kid with Type 1 diabetes do?