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 Grand Day for Walking

Maddie'sMissionFriends

We awoke to 25 degree (Fahrenheit) weather…brrrrr! Maddie and I pulled on layers of clothing to stay warm outside for a morning Walk.  We picked up several of her friends on our way to the BB&T Field in Winston-Salem, NC and joined a throng of other winter-garbed folks for a brisk Walk for a worthy cause!

JDRFWalk2013

IMG_1290

We walked near the end of the line this year. It’s quite moving to see the ribbon of people wind in front of you, to hear Maddie’s laughter with her friends, to talk with the family who had joined us that day to Walk.  We ate all kinds of yummy foods provided by local sponsors, played in inflatable climbing/sliding structures, and got our faces painted by Sonshyne of the amazing clown duo, Sonshyne and Jots of Circus Daze.

IMG_1291

SweetGirls

IMG_1292

All in all, the generosity of folks giving to Maddie’s Mission to find a Cure for Type 1 Diabetes, totaled over $800! We cannot thank you enough. But this figure was added to all the others raising money for the cause, which reached a staggering  $378,607.26 and is still climbing as other donations come in. Thank you, thank you for your gracious giving to help find a cure for this disease!! As I walked, I thought of each and every one of who had donated money to Maddie’s Mission.

IMG_1298

IMG_1299

And now….for the winner of a free Genevieve and the Kite! Actually, Maddie and I decided, that because we had so many donate, we should offer another prize. So one person’s name was drawn to receive the book, and another person’s name was drawn to receive a set of the new Kite cards! Here are the winners:

Sandra Torguson: Genevieve and the Kite

Ellen and Steve:  one pack of “Kite” cards

Thank you to ALL who gave and walked with us! It could not have been a more perfect day!

P.S. The above drawing was made from the photograph you see here. You all know how much love line drawings….for many reasons, but a major one is how it so beautifully depicts the connection between these sweet friends of Maddie’s.  Though her friends do not have Type 1 Diabetes, they support and care for her in so many lovely ways. This day was just one of the ways that her friends stand and walk with Maddie, supporting her along her path. Thank you Aida, Sigourney, Kaitlyn, Zoe, and Kaley!! Thank you also to the whole Mueller family for walking with us!! Your presence there made the day all the more special to us!

The Good Dose of Reality

KiteCoverCropped

I received a text from my youngest daughter Maddie when she was at school on Thursday morning.  Sitting at the computer, I was marveling at all the “likes” and “congrats” and purchases for my children’s book, Genevieve and the Kite. It felt like my kite was flying high in the breeze and I was along for the ride, enjoying every bit of it.

“Mom, my insulin cartridge is empty.”

Immediately, my feet hit the ground, let go of the kite, and off I went to the middle school. This news isn’t the worst thing you could hear from your T1D child. But it IS a show stopper, one for which you leave whatever it is you’re doing at the moment to go take care of. Without insulin, she will go into ketoacidosis from no basal rates nor the ability to process the carbs she eats.   As I was leaving the school, Maddie with a full cartridge in her pump and having corrected for the high blood sugar, I knew the goodness of that dose of reality.

Mind you, I’m not saying diabetes is good. Absolutely not! Again, on Friday morning, as I sat waiting for her to come down to breakfast, I’m once again looking at the computer, overwhelmed by the delightful reception to my book. But when Maddie tests her blood sugar and it is 413….THUNK! Feet on the ground. The scramble begins. I try to  figure out why it’s so high. Was it something she ate the night before? Did she actually bolus the snacks she had in the evening? Are there bubbles in the tubing line? In the cartridge? Is the inset failing? I did not feel good at all dropping her off at school. She insisted she felt fine and “mom, I have to be there!…I have so many tests!”

Diabetes is no respecter of persons. It does not care what you have going on in your life. It roller coasters without warning. It does what it’s going to do. It is what it is…a life-threatening disease.  The amazing technology developed over the years, has allowed Type 1 Diabetics to live what so many call “a normal life”.  I still, after 3 1/2 years, rankle at that phrase.

Yet this is the life my daughter lives, day in and day out. My husband and I live it with her. It is our reality. And viewed from a perspective of trust, it is a reality that anchors me, provides a tether to my flights of fancy. I have many callings on my life. Yes, being an artist is one. But I’m also called to care for our children and to be willing to ride the roller coaster of Type 1 Diabetes.

OLYMPUS DIGITAL CAMERA

We Walk in less than two weeks! You can read here and here, other posts about our walks to raise awareness and funds to find a cure for Type 1 Diabetes. A cure is on the horizon!! We are excited to hear about the developments and successes going on in the world of science. Someday soon, my daughter might live a life that is a good bit closer to what we would call “normal”. And that will be a blessing!!

**I am offering a giveaway of my book Genevieve and the Kite! For ANY DONATION, $2, $5, $10, whatever, to JDRF in honor of Maddie and her Mission to cure Diabetes, I will enter your name in a drawing. The day of the Walk, I’ll have Maddie pull a name to see who wins!  If you’ve already purchased a copy, perhaps you’d like another to give to a friend?  We are always amazed at everyone’s generosity to give to this awesome cause in Maddie’s honor.

Click Here to make your donation to JDRF for Maddie’s Mission!

Maddie thanks you!

Randy and I thank you!

From the bottom of our hearts!

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!

Joslin Diabetes Center

Maddie and I are enjoying visits to the new Joslin Diabetes Center.  The beautiful bright colors make you forget that the reason you are here is because your child has a life-threatening disease which requires ongoing management and education.  This morning, we met with the wonderful Kathie Cooper, our diabetes educator. I say “our”, because it really is education for ME (maybe moreso) as much as it is  for Maddie.

The start of each school year brings all kinds of preparations and a bit of anxiety.  There are forms to fill out, meetings to “educate” her teachers, sorting out her daily schedule and when things will happen, like lunch, P.E., recess, snack.  We are so thankful for how her elementary school has worked with us in caring for Maddie and assisting her with her diabetes.  This year, she and I are wanting the school to allow her more independence in the management of her Type 1 Diabetes. This might be a little tricky…so I am now armed with the legalities of what school’s should provide by law.  It is both daunting and liberating to work toward my daughter, eventually, being completely independent in her diabetes care.  Maddie is ready for the next steps in this.  I am ready too…I think.

The other thing I have on my radar right now (along with far too many other pressing and huge matters such as, oldest going off to college, mother starting radiation, my own teacher workdays beginning soon…) is the Walk to Cure Diabetes sponsored by JDRF in Winston-Salem, NC on October 27th!!!  Maddie and I missed this last year (largely due to my own overwhelm), but I am determined to not let this year pass us by!  It is such a wonderful event: so encouraging to Maddie and all of us who are affected by Type 1 Diabetes in our families.  I’m hoping to design t-shirts for our team, gather some friends to walk with us, and raise money for a Cure.

Word has it that a Cure could be within the next decade.  That would be a dream come true!