Tuesday, July 17, 2012

What is it like ...

To be the mother of a Type 1 Diabetic?

3 years ago Alexis got the diagnosis that any parent would dread. She was told that her son Justice has Type 1 Diabetes and that his life would be changed forever. She was thrown into the very short educational classes that all parents and people diagnosed with Type 1 Diabetes now a days are given, 3 day crash course on how to give insulin, check blood sugar, read nutritional labels, and how to save her child's life.

No parent or PWD ever asks to take on this full-time never ending job, but or some reason destiny has chosen us to take hit head on, show diabetes that WE rule it and it DOES NOT rule us!!!

Alexis was amazing, she took this disease by the horns and has never turned her back on it. She does everything for Justice that he needs to show diabetes who is boss!!

Alexis took the time out of her busy schedule to help me with my What is it like ... blog segment to give us her views on being the mother of a Type 1 Diabetes.

I hope you enjoy it as much as I do

Q: Your name
A: Alexis Newell of Chronicles of D-Boy and Ribbon

Q:  How old is your child and how long has your child been a Type 1 Diabetic
A: Justice is 9 years old, he was diagnosed at the age of 6, just 4 days after his birthday.

Q:  For the management of your child’s Type 1 Diabetes are they on an insulin pump (I on pump which one) or multiple daily injections?
A: Justice is currently on a pump break and using Lantus and Apidra. But our regular Diabetes management is pumping Apidra using an Animas Ping Pump, as well as his CGM, Dexcom. We love both and think they are both awesome tools.

Q:  What made you choose this method for management?
A: For us Lantus didn’t have the flexibility that we wanted. I like being able to adjust basals based on the hour, or hours that he is going high or low, as opposed to giving a set amount for the whole day and not being able to fine tune it. It also has given him more freedom in school and when he is with friends. He can check his sugar and bolus pretty much without any fuss. This means a lot to him especially when it comes to class parties, or friends being over. We chose the Ping because of the remote feature, its small basal increments, and its water proof abilities.

Q:  How comfortable are you with managing your child’s diabetes?
A: Very, but it wasn’t always like that. I used to check in with the endo weekly and then bi weekly to help adjust basals, ICs, ISFs, etc. Now I honestly only call if I am just not able to fix something. And usually I am. I believe that Think Like a Pancreas, Pumping Insulin and well the DOC have made a huge impact in my ability to take care of Justice as well as I do. I was blindly going before, relying on the Endo for everything. I like feeling like I have the knowledge on my own to make necessary life decisions for Justice without solely relying on someone else. It takes time, but it is possible. Not perfect, possible.

Q:  What does a typical day look like in your household in regards to diabetes management?
A: Ha. There is no typical with Type 1 in my opinion. But I guess the best way I could describe it would be all written out here : Justices Misbehaving Pancreas

Q: What does a typical day’s diet look like?
A: We do not limit Justice’s food. He eats like a regular pre-teen boy. Balanced, healthy and with snacks in moderation. The way all kids should eat. I am big on no HFCS, no artificial sweeteners (I suffer from allergies to it as does Justice), and lots of fruits and veggies.

BUT we also allow donuts, cakes, ice cream and other goodies. No more or no less than before Diabetes. Unless Justice is high or didn’t eat his veggies there is no reason I would say no…and definitely NOT because of Type 1.

Some foods like pizza or pasta are harder to manage but in our house our motto is “Not Bolus impossible just Bolus Worthy”.

Q:  Besides a cure what 1 thing would you like to see researchers working towards and why?
A: More accurate meters, if meters are 20% off how can our community be expected to make correct decisions and improve their numbers and quality of life? They can’t. I also would love smart insulin. 1 shot a day would be a HUGE improvement. Justice agrees.

Q:  What tips or advice would you give to other parents of newly diagnosed Type 1 Diabetic children/teens?
A: Reach out. Seek support and friendship in those who are living the same D life as you. Learn as much as you can. Doctor’s are doctors, but as parents no one knows their child better than you. Trust your gut. Educate yourself, and empower yourself to feel like you CAN manage this disease and not let it manage you. It’s hard. And some days still suck, but it does get better. And you are most definitely NOT alone.

Q:  What would you like to see more of out of the Diabetes Online Community?
A: Less division. More united. I am the mother of a type 1. But I am also the daughter of a type 2, wife of a type 2, and granddaughter of a type 1. I am all for educating on what type 1 is, but I am not for bashing type 2s in the process. The media portrayal of this disease is hard enough, without our own community turning its back on each other. The diseases may be different in origin but we are still in this together. PERIOD.

Q:  What is your favorite thing about the Diabetes Online Community and why?
A: The support system. The same same. That there is ALWAYS someone there for me. Whether it’s in Texas, PA, Florida, or Ireland I always have someone on the other end of my phone, computer or email who is ready to listen, support and encourage. THAT is priceless.

Q:  What 1 thing would you like to see discussed in the Diabetes Online Community that is not discussed enough?
A: What can I do to help make a change? Facebook posts, and tweets are great don’t get me wrong. But until we all go out into our communities, and truly put forth an effort to educate the masses, reach out to others who have not found the DOC yet, we cannot move forward. I know how alone I felt before the DOC, it pains me to think of others feeling that way right now. There is always something we can do, it doesn’t have to be huge, or generate money, or be on tv.

Just letting one person know, “Hey, I get it. You are not alone. I am here.” Can make a all the difference in the world. Same goes for educating some one who is clueless on the disease.

All it takes is 1.

There is so much beauty to be found in Diabetes, and within our community, I want everyone to able to experience it.

Thank you Alexis for your views and thoughts, I appreciate you helping me and everyone out.

Keep checking back for more views that are to come. 

No comments: