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.

CGM, JDRF & a WALK

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(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

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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.

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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!!

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For all of this, we are so very grateful!

The Good Dose of Reality

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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.

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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!