The Many Walks of Type 1 Diabetes

For those who have a child living with Type 1 Diabetes, there are many walks in life that others will never take. For our family, the first of these walks occurred when our youngest daughter, Maddie, was 7 years old. We walked her into Brenner’s Emergency Room, after having been told by our pediatrician that folks were waiting for her there, to take care of her.  After 3 days of learning how to administer novolog and lantus shots, how to test blood sugars and count carbs, among a myriad of other frightening and sobering things to watch out for, we walked her out of Brenner’s Children’s Hospital and drove home to begin our new life.

From there, we began the daily short walks to the spot in our kitchen where all diabetes supplies were housed…test kit, carb-counting book, insulin pens, alcohol swabs, tissues, and a chart for recording all the data. We have walked with her to and from the car when visiting her diabetes educator and doctor appointments every six weeks. We have walked in and out of her elementary, middle, and high school when emergency supplies were needed. We have walked in and out of pharmacies for the necessary medical supplies. We, as her parents, have walked her to soccer games, gymnastics, marching band…always wondering if she will need the extra juice boxes we have brought with us, or if some other diabetes related issue will arise.

Our nightly walks are the ones that have perhaps logged the most miles…a midnight and 3 am blood sugar testing requires walking back and forth from our room to hers. Depending on the number, once we test her while she sleeps, it may require a walk downstairs to get more juice or other supplies to tend to the errant numbers.

We begrudge none of these walks! Indeed, we would walk to the end of the earth and back for her if it meant helping in some way to alleviate the affects of Type 1 Diabetes on her body over the long haul. We are so very grateful for all the medical advances and technology that make her life less complicated than those who have dealt with Type 1 in past years. But there is a long way to go before a Cure is hers. And to that end, we walk another kind of Walk…the JDRF One Walk each year.

Maddie loves the JDRF Walks every fall! We are always amazed at the amount of support from friends, family and folks around the globe who have donated to JDRF in her honor. And then to walk with friends and family on that day along with so many others, truly makes us feel like we are not alone! When Maddie entered high school last year, it was not possible to walk in any other of the fall JDRF Walks, and we tried again this past fall, but  marching band and a high school youth retreat, have prevented our participation each year. She decided a few weeks ago that she wanted to walk in the spring, taking part in the JDRF One Walk in High Point instead of in Winston-Salem, NC. Randy and I were glad for her to have another opportunity to walk with friends and family, raising funds for a Cure for T1D.

But a few days ago, she discovered that her involvement in Show Choir was going to prevent her from Walking on April 28th. She was very disappointed, as this event was rescheduled due to a snow day earlier. She needs to be there, as she is part of a team who has been practicing since the beginning of the school year. Randy and I will walk in her honor and would be honored for your presence with us, and for your financial donation to JDRF on Maddie’s behalf.

The wonderful bit of all this is that the reason Maddie can be so involved in school activities, is because of all the advancements that JDRF has funded over the years for those living with Type One Diabetes. Without her insulin pump, Continuous Glucose Monitor, blood sugar testing kits, etc, participating in marching band and show choir would be extremely difficult. We will gladly send her on to Raleigh for the Show Choir Competition, while walking with JDRF this Saturday in High Point, NC. Won’t you consider donating to this terrific organization as they continue to do research, looking for a Cure as well as other advancements to make living with Type One a bit more manageable.

DONATE TO JDRF

If you’d like to donate, click the link to directly donate to JDRF in Maddie’s honor. Thank you so much in advance for all your support, both financially and in friendship. Maddie thanks you! Randy and I thank you! Your donations and presence with us, make walking this path of Type One Diabetes so much more endurable, enjoyable, and may one day lead us to the Cure we need for Maddie and so many others living with this disease. 

With gratitude,

Jennifer

P.S. The first drawing in this post was made just a couple of days ago, as our silly yet oh-so-studious straight A student sat “studying” her book. I thought this was such a cute way of trying to absorb the information by osmosis, that I had to snap a photo and make a drawing of our 16 year old, sweet as ever, girl. <3 The other drawings have been made over the years of Walking with our daughter.

JDRF One Walk 2015

JDRFOneWalk2015

Stepping down into the throng of people lining up to Walk is always a bit emotional for me. To see a sea of fellow humans who are, in some fashion, walking this path of Type 1 Diabetes, is at once startling and comforting. Startling in the fact that this wretched disease touches so many lives, children as well as adults. Comforting to know that we are  not alone in the daily fight to manage blood sugars.

FriendsJDRFWalk2015

Though it drizzled rain for much of the morning, I felt a torrent of love and support for our daughter Maddie. She feels it too I’m sure. Friends and family from far and near came to walk with her. To say with their presence–We are here Maddie, to walk with you in the fight to find a cure for Type 1 Diabetes and to support you and your family’s efforts to manage the disease.

UPforaCureJDRF2015

Our clever girl designed new t-shirts this year with a Harry Potter theme. In this sketch, she and her cousins and friends showed that they are indeed UP for a cure! Thanks Aunt Tracy for a great photo to draw from! Thank you RedHeaded T-shirts for printing Maddie’s design. And thank you , each and every one of you who donated money to Madeleine’s Army (formerly known as Maddie’s Mission). One day we will see a cure for this disease. We hope! But in the meantime, it is wonderful to know that Maddie has an army of people who love and support her in the daily challenge of living with Type 1 Diabetes.

Madeleine'sArmyT-shirt

Thank you!

With all my heart…Thank you.

**************

P.S. Because of your amazing donations, our daughter was able to walk the red carpet as a V1P!! This was a special treat for those teams who had raised over $1,000.

Also, her t-shirt design was awarded a gold medal for Most Artistic Design. Congrats Maddie!

 

CGM, JDRF & a WALK

OurHeroMaddie

(quick sketch with Bic pen)

Many of you know the hero who lives in our home. You’ve read about her diagnosis six years ago, the ups and downs of living with Type 1 Diabetes, her bravery and courage in the face of the daily challenges of managing the disease, and the Walk we look forward to each year rallying friends and family to support our hero and all the heroes of juvenile diabetes.

Since the age of 7, Maddie has become intimately acquainted with the discoveries and helps JDRF has brought about to make living with T1D possible. Blood sugar testing devices, insulin, shots and a pump. These are all the weapons with which our hero fights back the debilitating effects of out-of-control blood sugars. Her ongoing commitment to use these fools not only enables her to LIVE, but to live well and healthy. We are grateful beyond words for her and for JDRF.

In this last year, Maddie has added to her arsenal of Type 1 weaponry. she now wears on her body not one, but two insets–one for her insulin pump and now another for a CGM. The Continuous Glucose Monitor, shows us the trends in her blood sugar levels as it continually gauges them via the interstitial tissue. The monitor also sounds an alarm when her blood sugars hit levels either too high or too low, thus alerting her to test her blood sugar and make the necessary adjustment to bring her blood sugars back to a healthier level.

It was Maddie who wanted this new device. Over the last couple of years, she had noticed (as well as Randy and I, her parents) that she was not able to feel when her blood sugars were low until they got down to a scary level. She used to be able to feel it when her blood sugars were in the 70’s and 60’s. Now she sometimes hasn’t a clue until her blood sugars are in the 40’s! We were impressed and amazed that a 13-year-old would want yet another device to wear, keep up with, and manage.

She truly is a hero. Our hero. By saying that, I do not mean that she is impervious to discouragement and frustration. This is how I define a hero:

One who continues fighting the good fight, day in and day out, in the face of challenges of all kinds–discouragement, frustration, discomfort, and even others’ misunderstandings.

On November 7th we Walk in support of our hero and on behalf of all the other brave and courageous families and children affected by Type 1 Diabetes. We invite you to join us! Your contribution to JDRF will continue the ongoing research to create better tools for managing T1D and for finding a Cure! So many wonderful things are on the horizon! We appreciate any support you can offer!!

Click here to make a donation to JDRF in Maddie’s honor

and/or sign up to walk with us on November 7th.

Walk Together

2014JDRFWalk

Life should be lived walking through it together.

Burdens are best carried arm in arm with friends.

Joy breaks forth when many feet move in a common direction.

Love is felt when others choose to walk alongside us.

Yes. Yes. and Yes.

All of this, and so much more, I experience when we Walk for a Cure one Saturday a year in Winston-Salem, NC when a ribbon of people gather to walk with Type 1 Diabetic children and adults, all raising money for JDRF, all supporting the life these individuals live on a daily basis. Maddie’s smile beams all morning long as she is surrounded by friends who have chosen to walk with her. Conversation and laughter about everything BUT T1D peals through the crisp fall air.

MaddieFacePaint

WalkDayFacePaint

Pictures are taken to remember the day, especially the favorite part of getting faces painted by an incredibly talented clown named Sonshyne. Randy and I relish the camaraderie of adult friends who have also set aside their usual Saturday morning routine to come and walk with us. We remember with amazement all the folks who so generously gave their money in honor of Maddie’s Mission, doubling our goal! Yes, doubling it!!

TeamMaddie'sMission

For all of this, we are so very grateful!

Our Hero!

MaddieCatieUmbrella

My husband and I often say to our youngest (age 12) daughter (pictured on the left in the above drawing)–

“You are our hero!”

We say this for many reasons, but mostly because of the amazing way she handles living with Type 1 Diabetes.

We said it to her when she learned this year to give herself her own inset WITHOUT any lidocaine!

We say it to her when she has to repeatedly prick her finger to get enough blood to test her sugars.

We say it to her when she recounts how a substitute teacher treated her poorly when her pump alarm went off in class.

We said it to her when she stood in a choral group to sing and a teacher ( who did not know her) went off on her about getting rid of her “cell phone”. No alarm had gone off. The teacher just didn’t like the “look” of her pump being visible.

We say it to her when she comes home from school telling us how a student asked her for the umpteenth time–“What’s that?” After she has explained it to her numerous times.

We say it to her when she chooses to do all the things necessary for keeping her blood sugars under some sort of control…testing and eating something when she feels “low”, giving a correction and drinking water when her sugars are high, exercising, etc.

We say it to her when she patiently endures people saying stupid things to her like, “You don’t LOOK like you have diabetes.” Ugh.

We say it to her when she goes to a birthday party or a sleepover and makes wise choices about what she eats and boluses the insulin needed for her to enjoy the party.

Time and time again, she models to us a fortitude in spirit and a graciousness of character to endure on a daily basis, living with Type 1 Diabetes. Randy and I want so much for her to be free of this disease. We want all children and adults who live with Type 1 to have a cure available to them.

And so we Walk.

On November 8th we will walk with her, proud to be her parents. Her older sister (pictured above) and brother are also heroes for the countless times they have stepped in to care for Maddie and to learn all they need to be able to help her live with this disease. We Walk for the amazing heroes of Type 1 Diabetic children and their families who bravely face each day together!

Please join us on our Walk! We would love for you to walk with us in Winston-Salem! Or you can give to help find a cure for our daughter and so many others! Every year, for the past four years, we have been amazed at your generosity!! Should you wish to donate to Maddie’s Mission to find a cure, click here.

**Thank you! To each and every one of you who gives, you are our heroes too!**

***To read  more posts about our life with Type 1 Diabetes, check the Category here.

A Line for Maddie

Friends of ours who went to live overseas, said to those of us sending them off, that we were the ones holding the line on the other end for them.  I loved that thought! And, as an artist, the idea that I hold one end of the drawn line as they “draw” the lines of their journey, fascinates, inspires, and touches me deeply.

This is what I envisioned this past Saturday, as we Walked for a Cure for Type 1 Diabetes with our daughter Maddie.  ALL of these people, the long ribbon of folks ahead of and behind us, hold the line for her and for every Type 1 child and adult who lives with this disease. We were ALL connected that day.  All of us joined together by one single line… a HOPE for a cure for juvenile diabetes.

I thought how, for me, this line begins with my daughter and connects to me, my husband (the one carrying the young girls’ jackets:), Maddie’s cousin Zoe, our friend Anna, and all of you!  You who have sent donations (over $500!) and well-wishes and cheers of support for our girl.

Thank you for holding the line for my Maddie! Randy and I are deeply grateful to all of you! Merci.

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Can’t Wait for a Cure!

There are days I long for a cure for Type 1 Diabetes more acutely than others.  Here’s a peek into a day in the life of a 10-year old living with Type 1 Diabetes: (this was just this past Tuesday, so it’s fresh in my mind)

12am: While she sleeps, I test her blood sugar. 338. She had received a new inset (they have to be changed every three days) the evening prior, and often it takes a bit for the inset to “kick in”.  Did a correction (meaning I gave her the amount of insulin needed to bring her blood sugars down.)

4am: I tested her again to make sure the correction worked. 188. Small correction given to bring her blood sugars on down to a healthier level.  80-120 is the target.

7am: She tests for her breakfast bolus. 208. What? Evidence of the typical roller coaster of blood sugars.  Seemingly no rhyme or reason for the elevated level. She boluses via her pump for the insulin needed to take care of high bg and her breakfast carbs.

12:20pm: She tests at school for her lunchtime bolus. 235. ? Not enough of a bolus for her morning snack? An anxiety-inducing test?(which often causes blood sugars to rise). You just don’t know. She boluses insulin needed for bg and for lunch carbs.

2:45pm: She tests at school as she does every day before getting on the bus. 144. Good. She eats a snack at home without bolusing so she doesn’t “go low”(dangerously low blood sugar level) as she typically does in the afternoon.  This is due to recess being in the afternoon before getting on the bus.  Blood sugars continue to plummet long after the exercise.

4pm: While changing into her gymnastics clothes to get ready for her class, she accidentally pulls off her inset. 🙁 Really? We just did this yesterday!!  The routine of lidocaine-to-inset will have to begin when we get home from gymnastics.  She eats an extra snack to counter the effects of exercise on her blood sugar level.

6pm: She tests for her dinner. 149. Lidocaine (a numbing cream) is put on a spot in her mid-section with press-n-seal placed over it.  This allows the area to become very numb for the inset to be inserted later. She administers to herself a shot of insulin so she can eat dinner. We dash out the door to our son’s Choral Concert at Glenn High School.

8:15pm: Maddie and I leave the concert early so I can put her inset in and hopefully it will start working.

9pm: 116. A great blood sugar level, but for going to bed, it is safer for the level to be a bit higher. She eats a small snack to insure she does not “go low” at night.

12am: I test her to see how her blood sugars are doing. 213. Maybe too much of a snack? Correction given.

***On days like this, when diabetes does NOT understand that you have SO many things going on in your life that you really need and want to do, I long for the day when a cure for Type 1 Diabetes is offered.  It’s hard to imagine.  But this is why we are WALKING TODAY!  Thank you to ALL of you who have given so generously to JDRF, a fabulous organization working tirelessly to find this cure for Maddie!!

We are off to Wake Forest University where there will be scads of people who live with Type 1 Diabetes and their friends and families! You feel such support and camaraderie in this! Maddie’s cousin Zoe is here to walk with her today! She is so excited! We have T-shirts!! We will get to see Sonshyne & Jots, a clown couple who bring joy and festivity to everyone with their tricks and face-painting! We will walk together! We will eat together!

I hope to have a report on the day for you next week!

Thank you, thank you all!

**The above drawing was made of Maddie this summer as she drew with me downtown Kernersville at the Factory.  Many of the portraits I have of her are when she was younger. I need to paint a more recent portrait, as she is growing up to be such a lovely little lady.

A Grateful Girl!

A couple of Sundays ago, Maddie told me on our way home, that in Children’s Church, the teacher asked them all a question:

What is something you are thankful for and why?

“Mom”, she said, “I’ve always felt thankful for insulin, and that is what I said.  But I don’t think it ever really hit me, because the reason I said I was thankful for it is ’cause…I wouldn’t be alive.”

I looked back at her in my rear-view mirror.  A sweet smile was on her face. No self-pity there. No desire to be dramatic. Just glad gratitude.

I was the one struggling with the self-pity…or the pity for her.  It  made me remember back to being at Brenner’s, when she was first diagnosed. We had been there a day or so; she was receiving regular shots of insulin. We were all learning the ins and outs of this new life called Living with Diabetes.  The nurses had given her a JDRF bear with a toy shot so she could practice giving him his insulin shots.  I remember her also practicing on us.  And before she would give us the “spot”, she would say, “When I give you this spot, you will never be thirsty again.”

She had realized even in those first hours of her new life, that insulin was what made her feel so so much better.  Her thirst was going away.  She was able to make it to the bathroom and not have to go so much.  She wasn’t hungry all the time.  Her energy was returning.

I am grateful too! I cannot tell you how thankful we are to JDRF and to the support we receive through this organization locally!! Won’t you join us in our gratitude and make a THANK YOU donation to Maddie’s Mission to find a Cure for Diabetes.  They are close! In the next decade we may see a cure for this disease! Wouldn’t that be amazing?

Maddie (and I) will be even more grateful!

And we are so very grateful to those of you who have already given to Maddie’s Mission!!! A big hug to you today!

Mr. Whicker & Maddie: A Diabetes Story

In early December of 2009, Mr. Whicker knocked on our front door.  My parents answered the door, as Randy and I and Maddie were not there.  My parents had come to stay with our two older children since we were at Brenner’s Children’s Hospital.  My parents told Mr. Whicker where we were and why. Maddie had been diagnosed with juvenile diabetes.  Mr. Whicker’s eyes filled up with tears and he stood in our doorway and wept.

When my parents recounted this to me, at first I marveled at his compassion. And as my dad continued to tell me that they reassured him things would be alright for Maddie, it dawned on me that in his generation, children who were diagnosed with juvenile diabetes often died, or at least were bound to develop all kinds of eyesight, heart, and nerve problems due to the disease.

We live in a grand time when insulin and so many other discoveries and technological advances have made it possible for children and adults who are diagnosed with this disease to LIVE!!  Not only that, but the efforts of JDRF and others, have made living with Type 1 Diabetes so much less cumbersome and allow for a greater degree of “managing” the blood sugar levels.  As blood sugar levels are maintained within a healthier range, the debilitating effects of diabetes are lessened.  It is still by no means an easy disease to live with.  Compared to “normal” kids, even today’s technology seems cumbersome.  But compared to what it used to be like…we have come a long way!

We celebrate today that our daughter LIVES!!  She enjoys the benefits of so many things that JDRF has played a vital role in providing for her.  Here are just a few:

Maddie’s Test Kits

Won’t you join us in celebrating the HUGE advances the Juvenile Diabetes Research Foundation has been a part of?  Consider donating a few dollars to this organization so that they can continue down the path of finding a cure!

Mr. Whicker and Maddie will be so glad you did!

So will I! 🙂

Maddie’s Pump and Inset

Remember! We Walk for the Cure on October 27th!! Come join us if you’d like!

October means The JDRF Walk!

It’s been TWO YEARS since Maddie and I participated in the JDRF Walk for the Cure.  Last fall was just too crazy and it pained me to have to bow out of it.  I vowed not to let busyness push it out of our calendar this year!! So we are signed up to walk, and would invite ANY of you who would like to walk with us, to please do so!!

Saturday, October 27, 2012

Wake Forest University BB&T Field

Winston-Salem, NC

Registration starts 9 am

Walk begins 10 am

I’ll be posting once a week about this wonderful organization called the Juvenile Diabetes Research Foundation.  This group has been around since the 70’s.  Due to their efforts in research and fund-raising, they have literally made it possible for a child with Type 1 Diabetes to LIVE.

When Maddie goes to her appointments at the Joslyn Diabetes Center, she is now told that a cure is around the corner…possibly in the next 5 to 10 years!!  The need for funding is great as they close in on finding a cure and discovering other technological advances that make living with T1D so much more manageable.

If you would like to contribute to this fine organization to help find a cure, PLEASE CLICK HERE! The set up for donating a few dollars is SO simple through the JDRF site.  Maddie’s Mission is the name of our team.  Your contribution, no matter how small, goes to benefitting Maddie and so many of her friends she has met who are also living with Type 1 Diabetes.

We would be truly grateful for your donation!

AND if you’re in the area, please walk with us!!

To read more about Maddie and her diagnosis of Type 1 Diabetes when she was 7 years old (she’s now 10!), click here!

And…for all other posts about Type 1 Diabetes, click here!