Expressing ourselves and our battle with T1 through art…
Click on the link below to see a video KC created….
Expressing ourselves and our battle with T1 through art…
Click on the link below to see a video KC created….
I loved the movie “Freaky Friday”..both the Jodie Foster original and the LiLo remake…..what would it be like to change places with someone and really live life in their shoes? What an opportunity!
Which brings up T\today’s blog prompt: what disease you would like to trade for diabetes for one day….
Well…..I wouldn’t trade the known for the unknown. That being said, I think I’d like my kids to trade for a day. Let #1 son see what Type 1 diabetes is like and let T1D daughter see what a day without milk/cheese is like! Each kid thinks they have it worse….”Yeah, but KC can eat anything she wants, all she has to do is have some insulin….I eat some cheese and I could die!” “You think it’s fun having to check your bg all day and wear a pump stuck to you…always having to count everything thing you eat? No insulin and I could die….so there!”
SHAZAM! Roles are reversed. How would they react? What would they think? #1 son would probably enjoy the ice cream but get sick of my nagging “What’s your bg? You can only have one serving (to the kid who can eat a quart of So Delicious Soy ice cream in one sitting) and let me measure it for you.” As for KC…”no you can’t have string cheese, or mac and cheese, or that glass of milk with your cookie. You want pizza? Let’ s get you one with extra sauce, no cheese and extra pepperoni! No we can’t go to Chick Fil A for nuggets and ice cream….both have milk…did you forget?”
Hmmmmm….me thinks they might prefer to go back to their old lives! And maybe understand each other a little better!
When I got up this morning and checked today’s blog week theme, my first thought was “Wow! What a great day for this topic!”
Today my sweet 13 year old, 7th grade daughter with T1 is on her way to Vanderbilt University in Nashville for an awards ceremony. Back in February, she took the ACT (yep, that ACT the one juniors and seniors in high school take) as part of Duke University’s Duke TIP program, which identities gifted and talented children from 4th grade to 7th. BD, (before diabetes) as a 4th grader, KC was accepted into the first level of the Duke Tip program based on her Iowa Test of Basic Skills scores. In 6th grade, she was accepted for phase 2…which allows 7th graders to take the SAT or ACT alongside high school students. 7th graders who score better than 50% of the high schoolers taking the exam are given awards. And my sweet girl rocked the ACT! She is considered ready for college level courses! Woo hoo!
T1 diabetes has not slowed her down. It does not keep her from achieving. We have never considered the fact that T1 diabetes is considered a disability or a special need. Yes, we have some accommodations in place at school like being able to test bg any time, any place. And of course, being able to treat highs or lows…. KC has maintained straight A’s since dx with no further accommodations. She doesn’t check bg before tests–but she wears a cgm, so she will be alerted if she is out of normal bg range.
And then came registration for the ACT….and there it was….under “Special Needs” the word DIABETES. We had to send in documentation from the school allowing KC to check bg as needed during the test and have water + food/drink to treat lows on her desk during testing. We did not ask for extra time or a separate room. Just that she be able to test and treat as needed. ACT provided her with that accommodation. She felt fine during the test and never checked her bg. She had a snack when everyone else had a snack.
And she did GREAT! I noticed that her scores declined a little as the testing day wore on….but was that from her ability or fatigue or bg? I don’t know.
Will she ask for further accommodations when she takes it “for real”? That will be up to her. I do know that she will be able to take it again in 8th grade “for fun” so we will see how she does after that to help us decide what route to take in the future.
So her accomplishment was a great score and great management during the test. My accomplishment was getting her what she needed from the ACT and giving her the wings so she can fly!
Sadly, I’m not with her today at the ceremony….only 1 parent was allowed to attend. So it is a Daddy/Daughter Day! Another accomplishment –because today Dad is completely in charge of her T1 management! One more step toward her independence!
Today bloggers in the D-world are going to share our most memorable diabetes days. And none is more memorable than KC”s diagnosis day…So here is a repost of
Originally posted July 9, 2011
An athletic, active, energetic 10 year old, KC spent the fall playing sports for her school. She started off with volleyball and then went straight into basketball, with some tennis on the side. Autumn in the Southeastern US is still filled with hot days, so KC’s ever-present water bottle didn’t appear unusual. Likewise, I didn’t think anything about the occassional (or so I thought) getting up in the night to go to the bathroom. You drink alot, you pee alot….go figure!
Our family was going through a stressful time due to my dad’s carotid artery surgeries and difficult recovery. By early Dec. we were all exhausted and run down. Both kids annual checkups were scheduled in mid-December but our pediatrician doesn’t allow siblings to have appointments back to back so they were scheduled about a week apart with KC’s appointment set for Dec. 14. One look at my calendar showed a conflict with her basketball game…she hates missing a game, so I called and flipped her appointment with her brother’s scheduled for Dec. 20. And that my friends is where Divine Intervention, serendipity, or Fate –whatever you want to call it–stepped in!
Friday Dec. 17 was the kids’ last day of school before Christmas break. A day filled with parties (i.e. junk food) and sadly for KC, time to say good bye to a beloved teacher who was leaving the school. KC was sobbing at the breakfast table but managed to pull herself together in time to leave for school. She made it through the day and that night my husband, J, and I decided to take her out for Mexican food, which we usually do only when #1 son isn’t with us as his milk allergy is harder to manage in places that serve so many foods covered in cheese. So with #1 son at a movie with a friend, it was KC’s night alone with Mommy and Daddy. She ordered chips and queso dip, plus large glass of milk before dinner. After drinking the milk, she complained of feeling sick. I quickly retorted that all the junk food she ate that day probably was to blame—little did I know. She refused to eat any dinner and begged to be taken home. The next morning she was lethargic–the girl who usually spends her free time dancing or exercising for fun was laying on the couch. Sunday more of the same. We had to drop #1 son off at a dance and decided to take KC to the mall to help pass the time. On the way to the mall, she begged for a drink. “The first thing I want to do at the mall is get a drink….you don’t understand, Mommy, I’m really thirsty…” So off to the food court and she orders a fruit smoothie (ok, knowing she has T1 you can see where this is heading, right?). We pass by the Godiva shop and do something we NEVER do (again, because of #1 son’s milk allergy) we buy her CHOCOLATE! Then on the way out of the mall, she begs for another drink..we hit a vending machine and I’d like to think we got her a water but I believe we bought her a Sprite. We get back to the dance and she is ready to throw up…but can’t….so she drinks tons of water and lays on my lap. In the car on the ride home, she is making smacking noises as she tries to get saliva…”Mommy, really, I HAVE to have something to drink NOW!” J reminds her of her check up scheduled for the next day and tells her to make sure and let the doctor know that she hasn’t been feeling well….
Dec. 20, 2010 after a breakfast of two waffles and a glass of milk (plus the Hershey Kiss she stole on her way out the door) we headed off to her “well-visit.” KC’s biggest fear was the Flu shot that was waiting for her! KC reminded me to tell the doctor about her thirst…and this is where denial comes in–I could not believe that KC could have diabetes because our next-door neighbor (#1 son’s best friend) has T1. It is unbelievable that two kids on the same block could be T1s–what are the odds? Anyway, the doctor came in, did his exam, found KC to be in great health and then asked “is there anything that you are concerned about?” KC’s big blue eyes bored into mine….I heard myself say “well, she’s been really thirsty….but I think she’s coming down with something….”
Dr. L. looks through her files and says “there is some sugar in her urine, but that is normal depending on what she had for breakfast…”
Waffles, syrup, Hershey Kiss….my mind is racing…
“I’d like to do a blood glucose test to double check.”
Her BG is 435. Normal is 80-150.
The world stops moving.
As if through a fog filter I hear the doctor…”…juvenile diabetes….let me make a call…”
He leaves. KC cries…she knows what this is. She’s afraid. So am I. I hear Dr. L on the phone outside our exam room. He mentions Dr. N…I know this name. I know his wife. He’s the best ped. endocrinologist in town. I have a friend whose son sees him for another reason. I feel a sense of control return.
Dr. L says get to Children’s Hospital. Do not stop on your way. They are waiting for you. KC is healthy and will be treated as an out-patient.
I have no idea what this entails.
In shock, I get KC to the car. I stand outside and cry. Then I begin the phone calls…my husband, my mother, my son….
And then life changed forever….
“Recently various petitions have been circulating the Diabetes Online Community, so today let’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) – get creative!! What are you trying to change and what have you experienced that makes you want this change? ”
We, the Undersigned, respectfully submit to all manufacturers of insulin pump and continuous glucose monitoring systems and glucose meters/test strips, the following petition.
As you continue to develop new technology and improve upon existing, we ask that you consider more than the medical impact of the product on the lives of the end users and their caregivers. It seems as if each company is living in a bubble and not really looking at what life is like for a child with Type 1 diabetes or a parent of a child with Type 1. Some companies are all about touch screens and color displays…others appear stodgy in comparison. In reality, what we want are products that make our lives a bit easier and many products are falling short. For example, we have great pumps without integrated cgms. We have cgms with barely audible alarms. In the past year, one pump/cgm company came up with a caregiver monitor—this should have been part of the plan from day one. Today, another cgm manufacturer is working toward a caregiver monitor….more than a year after the other company released theirs. Should such a monitor even have to be an add-on? Absolutely not for a disease associated primarily with children! Help us fight the insurance companies to get coverage of these items. Fight the FDA to have them packaged together.
The insulin delivery technology is impressive….but the lack of a pump/cgm system that has it all has many of us frustrated. And yes, we know about the Artificial Pancreas Project….but our fear is that even that system will not keep the end user in mind…form and function can go hand in hand and should. We challenge your engineers to think about what the customer wants in addition to what we need. And what about a more universal approach to supplies? I know generating revenue is a huge factor as to the proprietary style of test strips, insertion sets etc…..but I have one word for all marketing and engineering people to remember….”Betamax.” Yep, the best video quality out there at the time, but Sony didn’t want to share…..and betamax disappeared long before VHS and Sony learned it’s lesson as well.
D-moms of the World
Our Endo and Diabetes Clinic team are so supportive. I appreciate that they talk directly to KC and spend time getting to know her beyond her disease. We share all kinds of things with them…especially her successes-everything from being elected Student Council treasurer to science fair awards to volleyball MVP. I know her Endo is proud of her hard work at maintaining an a1c that has averaged 6.5 for almost two straight years, but I also want them to know that she does that while excelling at life, as well. So we do share!
What don’t we share…the days when veggies are forgotten! So glad they only ask for a three day food log! We also don’t share the rare times when she has forgotten to bolus for a meal! Or that we may or may not have followed FDA guidelines regarding the number of days a cgm sensor may be used….”yeah, site changes are every three days…that’s right….” That’s my story and I’m sticking to it!
But overall, we share and share and share…and are so grateful that they take the time to listen!