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.
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!
As an adult with Type 2 diabetes I understand the shock those high numbers can bring, what happened, what did I eat, did the insulin get too cold/hot? I swear my numbers go up as I approach the end of a bottle(or pen)… and wonder if it really lasts unrefrigerated as long as they say, and I wonder is my refrigerator too cold. The panic when I’m out of test strips and have to guess how much insulin to give myself…. it is a constant companion, the imp sitting on my shoulder. Then there are the low sugar events… you just feel odd at first, then sweaty, then your heart races and you feel like you’re having a heart attack… the first time it happens you don’t know what’s wrong, finally check your sugar and find the number is below 30… now what? The rush to the store for a cola with sugar in it or orange juice because anything containing sugar has been out of this house for years. Normal life? I’ve battled this so long I have no idea what normal people do anymore. I really don’t expect you to publish this comment, just wanted you to know and your daughter too, that she is not alone… we’re not normal but we’re here and we’re managing… some day a cure… wouldn’t that be a great day for millions like us the world over.
Oh Elaine…my heart goes out to you. It is truly a crazy, unsettling ride. This posted on its own, but I am happy to remove it if you would like. Thank you for sharing a snippet of your life. I sincerely wish you all the best in managing your diabetes. We will be thinking of you when we walk.
Yikes! You’ve been quiet about Maddie and her diabetes so I figured that all was on a “normal” routine. This story certainly wakes me up. Best wishes on the walk, I’ll snail mail a donation.
Hi Sandra! It is a constant issue, something we are always dealing with in one way or another. Just got back from a diabetes care check up with Maddie. She goes to the doctor every 6 weeks. Her A1C was great! We were so thrilled. So thankfully, the spikes and lows, if they are caught and treated, don’t have a lasting effect. It is just always on our minds and Maddie does a amazing job of taking care of herself! Thank you Sandra!
Maddie is flying her kite and so are you. I read your book while I was at my daughter’s yesterday and as you said there are no guarantees the kite won’t tangle in the trees or fly loose and away. Life itself being in the balance is a lot scarier but Maddie still is Flying! This IS her normal. My nephew Timothy has a severe allergy to milk and any products derived from it. Epi pen is carried at all times and he has gone into anyphillatic shock several times with his parents (a nurse and a paramedic) thinking they’d lost him at least once but it his his life and his normal. And it is scary! But boy, when these kids have a good time, a good week or a good month the joy is super isn’t it? Yep, you hold the kite you got when you found yourself pregnant with Maddie and it dips alarmingly and then soars so high. I think this book of yours is so aptly named Genevieve because if it holds true in your family as it does in my nephew’s, she handles it with more ease than you probably do. I like how you say you are hitting the ground with a bump after enjoying the highs of your success but I Hope you get to enjoy the success far more than hitting more bumps on the ground. Your book really covers a basic life truth doesn’t it? It covers little fears and great big ones, ones that are only in our heads and ones that are concrete and stare us in the face day in and day out. I think I am very glad you wrote it for all of us!
My daughter really liked the story and the pictures too!
Timaree, your comment here leaves me teary each time I read it. Thank you so much for this affirmation. You are right…we are flying our kites! They are different, but we are flying them to be sure. Thank you. Big hugs to you Timaree! P.S. If you felt so inclined, would you write a simple review of my book on amazon? If you go to amazon, type in the title of the book and then click on it, there is a place to click to write a customer review. I would love it if you had a minute or two to do that. Thank you again, as always, for taking the time to comment here!!
Review done! I hope you don’t mind but I also suggested readers of the book come see your blog but stopped short of leaving the address on the review since it’s on the book anyway.
Thank You So much Timaree!! For both the review and the donation!!!! Maddie is so excited about everyone’s generosity to help find a cure!! I love the review you wrote…it’s just perfect! Thank you!!