Happy Diaversary

Today marks one year since we began this journey with Type One Diabetes.   It has been quite a journey, but I can truly say that it is a Happy Diaversary. 

Happy because Eliana is a confident, energetic, and joyful seven year old.

Happy because the stomach problems that plagued her for the first few months after her diagnosis are gone now.

Happy because the kid who was crying her eyes out the first week of school now enters the building without any fear.

Happy because she is healthy and active - always on her scooter, bicycle, or jump rope, always learning new things, with wonderful, creative ideas and excitement for life.

Happy because when going through trials, God is with us.  He understands our frailty, our doubts and our fears, and is our comfort and our peace.

Happy because despite all of the attention and constant management this disease requires, she still manages to look on the bright side of things. I found this little book in her school binder this week.   It almost made me cry . . ok, maybe it did just a little. 

Her cover is her pink glucometer, with a perfect 100 blood sugar!  She mentions the new friends she has made because of diabetes, her upcoming diaversary, how she misses CHOP, the technology that assists her, the privilege of buying lunch first in the cafeteria, and her hopefulness that a cure will be found soon.

There's plenty of negative stuff she could have written about.  Checking her blood sugar ten times a day.  Getting injections before every meal and snack.  Having to wait around while her slow parents figure out her carbohydrate count.  Being told she can't have something to eat because her blood sugar is way too high and we have to let it come down first.  Kids asking questions all the time about her Dexcom.  Having to miss class, and even worse recess, because of constantly reporting to the nurse's office. The terrible, shaky, weak feeling of a blood sugar in the 50's. 

But in this little book, as in her daily life, she is focused on the positive things.   She's been able to make new friends with diabetes - there is an instant connection when T1D kids meet and spend time together.  She's had countless juice boxes, which are always a treat for her, and plenty of milk and cookies before bed to combat falling blood sugars.  (She takes a bite of cookie, a sip of milk, smiles and says, "Thank you Diabetes!")  The whole family got to experience a Diabetes Family Weekend at the Double H Ranch.  Eliana did a high ropes course, zip lined down, was in a talent show, played games, swam, did arts and crafts, and so much more!  Her frequent trips to CHOP are exciting for her because it is one of her favorite places.  She was part of a JDRF Walk to End Diabetes and is already planning for next year's walk.  Counting carbs are fun for her because she uses the scale and the calculator and she impresses everyone, including herself, with her math skills.  Even pump shopping is fun . . she loves gadgets and technology and pushing buttons.

Of course it is not all positive.  She complains plenty too.  She has her moments of moaning and yelling and crying.  But that has not been the defining characteristic of this past year in any way.  Eliana just turned 7.  Every other year she has been super anxious to get to the next age.  For the first time, this year she said that she didn't want to turn 7 because she loved being 6 so much she wanted to stay 6 for another year.   Her sixth year was so difficult for me and Pete in a lot of ways.  So many sleepless nights because of plummeting and skyrocketing blood sugars. So many hours on the phone with insurance companies advocating for supplies.  So many tense conversations with folks at her school to ensure that they are doing what they should to care for her.  Trying to balance the extra attention with extra attention for our sweet Leah.  Concern for her future with every research article read about long term effects of this disease.  Concern for her with every story heard from another T1D parent about the emergency, crisis situations that can arise.  But, Eliana was spared all of that, at least for now.  She had a great 6th year, and that is a reason to be happy.  Really, really happy. 

And lastly, after a year of learning so much about type 1, I have a far deeper appreciation for the fact that Eliana was diagnosed without ever becoming very ill.  I've talked with so many parents of T1D kids this year, and many of them still seem traumatized by how very sick their children were before they were diagnosed.  They talk of things like the ICU, seizures, comas, severe dehydration and weight loss, and life and death situations.  When I think back to how we managed to be spared, I am so thankful to God for my very wise Mom.  After sharing my concerns with her about Eliana going to the bathroom constantly and drinking all the time, she fully supported getting blood work done. My plan was to wait until her next doctor's appointment.  After the folks came to visit and Mom saw how much Eliana was drinking she very definitively said, "Don't wait, take her sooner."  She didn't know any more about T1D than I did, but she had the wisdom not to wait.  Postponing her bloodwork for another week and a half could have very easily meant a very different diagnosis story.  So, thanks Mom.  Just goes to show, as we all know, no matter how old you are you still need your Mom.

So, here's to Eliana!  And her Diaversary!  And to all of you . . . family, old friends, and new friends . . who helped us through this first year.

I am sure Eliana will have plenty of ideas of how we should celebrate! 

Masterpieces

Eliana and Leah are truly the most wonderful artists.  I love everything that they create, and love watching the progression of their creations.  But, I am drowning in their creative pursuits.  They constantly, draw, paint, and color, at home, school and church.  There is no end to the amount of artwork that they produce.  And so inevitably I must throw out a lot of artwork and projects because I can't possibly store it all.  I have saved a lot already, but my storage places are overflowing!  Each time I throw something away I feel a twinge of guilt.  Considering that I am throwing things away constantly, the guilt is pretty constant.  Do all moms throw their kids art away?  Is their any other option?  If I didn't throw it away, I feel like my house could be on Hoarders with the amount that they produce.  Yet I still feel terrible!!!

This post is to highlight some of the creations of the last week or two, and to illustrate just how much they create, just how beautiful it is, and just how difficult it is to dispose of such beauty!

  

Leah's Masterpieces:

Leah's beautiful watercolor

Valentine for Mom & Dad (SHE WROTE MOM & DAD HERSELF!)

Inside of the precious Valentine

Van Gogh's Sunflowers - this should really be framed and on a wall!

Leah practices writing the word "No" and the letter "I" over and over! (REDRUM!)

A masterpiece from the easel. This is #347 in the easel series.

I asked her who she was and she said, "Abraham Luther King Jr." Eliana and I had a good chuckle.

From Left to Right: Mommy, Leah, Eliana  (Awww!) (Sorry Daddy!)

Eliana's Masterpieces:

Eliana with her first book report.  This is the "visual."

This is the report she did about Althea Gibson. She did all that writing herself!  So Proud!

"I would get Mr. King peace for his birthday" hat (3 dimensional art is even more challenging to store!!)

It is much more difficult to throw away art that has Jesus' name on it!

Cheerful Rainbow (front side)

"Rain and Sunshine is like a worm hug." (Back Side) Who doesn't like a worm hug??

I love her too, Emma, I love her too!

Cozy Days

The winter is in it's home stretch.  It is 4 degrees outside right now and has been like this all week! Every morning on the way to school we talk about the things we are going to do in the summer/spring weather.  "Go barefoot!"  "Eat water ice!"  "Have picnics!"  But, at the same time we are enjoying cozy days snuggled up in the house together.  I wear my bathrobe 98% of the time and want no part of the cold.  The kids still make attempts to go out and play.  Eliana gets excited at any amount of snow and is out there shoveling, making snow angels, attempting to make a "snow family."  Leah prefers to be indoors but makes a noble attempt to get outside briefly before retreating for hot cocoa.  Pete is worse than the kids in wishing for snow days.  He tracks the weather obsessively, and faithfully scrapes the ice off my car every morning.  We've focused a lot on indoor pursuits. The girls have fallen in love with the TV show Master Chef Junior and love cuddling on the couch to watch.  It has renewed their interest in cooking so we've been doing a lot of cooking and baking together.  They are also happy painting, drawing and creating artwork for hours.  It is nice that they are content to relax at home together!

There have been some exciting things going on this winter.  For starters, Eliana has now lost two teeth.  Her peers started losing teeth in kindergarten and she had just about given up that it was ever going to happen for her.  She finally was visited by the "tooth fairy," and left her the cutest note requesting that she leave money, but also leave the tooth because she wanted to bring it to school the next day to show her class.

We discovered the Trader Joe's in North Wales - BIG NEWS!  The Trader Joe's in Jenkintown is my go to store for so many things.  But the TJ's in North Wales is HUGE, and they have these little tiny kid sized shopping carts.  Leah, who usually complains within the first 3 minutes of a shopping trip, is happy as a clam to fill up her own little cart with groceries.  So Fun!

The girls have a new favorite pastime of climbing up the doorways.  Eliana mastered it first and gave Leah "lessons" until she perfected it.  They spend a lot of time hanging around the doorframe, and have all kinds of different techniques. They've amazed several of their friends with this trick and are quite proud of themselves.

The girls got to help out at a bake sale - a fundraiser for the nursery school.  They loved manning the table and taking people's money.  Eliana even convinced me to leave them alone for five minutes to handle it ALL BY THEMSELVES. 

Christmas happened!  Leah got to spend quality time with her BFF Caspie.  We had so much fun in NY that I didn't capture much on camera at all, which seems to be pretty typical for our NY trips.

Over Christmas break we decided to take the girls out to lunch at our favorite Japanese restaurant.  We had a lot of fun, but decided that we won't try it again until they are older since they rejected everything but the California rolls.

I ended up being sick for most of Christmas break . . .a virus that lasted for a week and then somehow turned into pneumonia. Somewhere between the virus and the pneumonia we made it to Happy Tymes and Leah had her first (successful) trip on the Frogger.  Big Day!

The girls both received lessons from Nana & Papa for Christmas - Eliana chose swimming, and Leah chose gymnastics.  Swimming had a rough start.  This is Eliana below with her scared face.  She is worried about getting her face wet.  But she has really made great progress and is so much more comfortable in the water now!  The goggles have helped too!  Leah likes splashing around in the water as well, and Pete has been a trooper and has gone in with her while Eliana has her lesson.  (Although after last week when the pool was evacuated because a kid had pooped in it, I'm not sure he'll be going back in.)

 

Leah loves her gymnastics class, especially because her close friend Adelaide is in the class with her.  They are goofy and hilarious.  They both take more breaks during class to drink water than their combined water intake for the rest of the week.

I've enjoyed some "date" time with the girls individually.  Leah is easy to please - she is in love with Dunkin Donuts. Eliana opted for a more sophisticated sushi date.  It went very well until she dropped the last piece of sushi on the floor and cried for an hour.  Poor Eli.  

Eliana and Leah have grown closer and closer.  They have so many private jokes and secrets between them.  Eliana continues to be the nurturing and bossy big sister.  She is extremely responsible and trustworthy.  Leah is loving and generous and a bit mischievous.  She is the comic relief of our household and Eliana is her best audience member.  We are looking forward to spring, but also enjoying the winter, and each other!

Four Month T1D Update & JDRF One Walk

It has been a little more than four months since Eliana was diagnosed with Type 1 Diabetes. We have all adjusted to the physical components – counting carbs, checking blood sugars, insulin injections.  We all continue to process the emotional components in different ways.  The first few weeks of summer diabetes was a heavy and constant presence.  It takes so much attention and focus to manage, that it was easy to feel consumed by it.  Children are different than adults though, and Eliana would say sometimes that when she was having a lot of fun she would forget she had diabetes.  I was glad that she could forget about it sometimes, and it was clear when she was running through waves, going down the Super Slide with Sara, or flying a kite . . it was nowhere near her mind.   

It was good to have the summer together.  We spent a lot of time as a family of four, cocooning and figuring things out together.  The CHOP team advised us to try to keep things as normal as possible, and for the most part we did.  We took our second vacation to Ocean City, joined for part of the time again by Sara and Aunt Jessie.  We took a family trip to the Poconos with Nana and Papa and Aunt Jessie and Sara.  The kids loved spending time in nature, and swimming in the pool, even though it was really cold!  We still had our annual visit from Aunt Jenise.  We went to playgrounds, museums, and diners .  . adjusting each outing to our new reality. We realized that before we left the house we needed to be prepared with all of the supplies, and backup supplies, that could be needed.  We realized the challenges of counting carbs at restaurants and arrived armed with a scale, measuring cups, and various apps. We experienced the difficulty of checking blood sugar on the beach with sand, sunblock and saltwater working against us.  We carb counted S'mores around the camp fire.  We tried to be prepared for everything to try to help Eliana not be deprived.  Small acts of spontanaety, like getting ice cream from an ice cream truck, felt like small victories.  It may not have been a carefree summer, but it was a good summer.

We rented the same house, and the kids were thrilled to be back.

"I wonder how many carbs are in sand?" "Does it matter, it tastes really bad!!"

Pete kept a vigilant watch for seagulls.

Eliana amazed us by flying this kite in one attempt after Pete and I failed miserably.

 

Eliana and Sara went down the Super Slide a dozen times

It was great to see Eliana having this much fun!

On the ferris wheel with Daddy

Reunited with Aunt Jenise

No one can push a tire swing like Aunt Jenise!!!

Couldn't  you eat them up?

Leah's needed extra TLC lately, and Aunt Jessie was happy to oblige

S'mores are worth the extra insulin!

Eliana and Sara look like they're way too cool for the big chair.

Leah loves that I can pick her up and carry her around when she is water.

Three little fishies

The girls loved sharing a bed

There is none cooler than the Papa

Throughout the last four months family and friends have been wonderfully supportive.  Gran and Nana and Papa have all accompanied us to CHOP appointments and learned more about T1D.  Gran went with us to our first T1D Family Support Group.  Nana has been trained in injecting insulin and even handled an entire day of diabetes care so that Pete and I could go to a wedding and the kids could go to Penny's birthday party.  Matt and Jill counted each delicious carb served at Penny's birthday party so Eliana could fully participate.  Emma and Evangeline, our fabulous teenaged babysitters have learned about diabetes and are experts at checking blood sugars.  Family and friends have learned to check blood sugar, and allowed Eliana to check their blood sugar.  Friends have very generously cared for Leah so that she did not have to sit through so many boring doctors appointments.  The phone calls, emails, cards, prayers, and encouragement have all been very much appreciated.  We've also realized the importance of connecting with the larger T1D community and have met other families affected by T1D (one right on our block!), which has been great!

Eliana has learned so much in four months, and has gained an amazing understanding of her diabetes. She got her pink Dexcom right before school started, and I am so grateful for it.  I honestly don't know how people with T1D live without this device.  The Dexcom gives us constant trending information about her blood sugars, and we can test with a glucometer much less often.  Best of all it has an alarm that goes off if her blood sugar drops too low, helping us to be able to treat her low before it is at a dangerous level.  We can sleep at night knowing that the alarm will ring if she is low, which translates to far better sleep than we had been getting.  Eliana appreciates the Dexcom too, and is very diligent in keeping an eye on her numbers.  Since Eliana has started school she seems to realize that she needs to be responsible for herself, and even advocate for herself.  We are beyond impressed with how well she is doing.

Eliana is very interested in learning about the various cures for diabetes that doctors and scientists are working on.  She even comes up with her own cure ideas, and she's also working on an invention where insulin is delivered through bubble gum, rather than through injections.  We are planning to walk in the JDRF One Walk in Philadelphia on October 26th.   If you're reading this, consider showing Eliana your support by joining Team Rufus (click on the link for details, or email me!), I know it will be a memorable day!

 

My name is Eliana.  I have Diabetes and a little sister and a Dexcom.