My daughter was diagnosed with type 1 diabetes 4 years ago. So what have we learned in that time? If you have been following this blog for a while, please know that there will be some tongue in cheek that follows (all though, firmly rooted in the truth)
1. That we (people dealing with type 1 diabetes everyday) know more than most every medical professional we see outside of our Endo’s office. We have been shocked and surprised by the complete misunderstanding of type 1 in the medical community.
2. That we have learned more about diabetes management from other friends and families dealing with it than we ever have from a Dr, a hospital, or a book.
3. That when I need an answer at 2am to a question about diabetes, I can post it in a Facebook group and have 6 quality responses in seconds.
4. That 8 hours of sleep a night is merely a suggestion. In my house, that’s more like 2 nights.
5. That the carb counts in pizza, Chinese food, and banana’s have a 1.756489 multiplication factor.
6. That every night at 1:15 am, her blood sugar can be 120. Or 315. Or 55. That is why we do multiple night time checks.
7. Speaking of night time checks, if you would like to lower your a1c levels, night time checks are a must. Why would you bother checking 10-12 times a day, and then skip 8 hours a day completely? You are leaving a great deal of possible effective management unmonitored.
8. That Albert Einstein’s definition of insanity easily applies to understanding diabetes: “Insanity: doing the same thing over and over again and expecting different results.”
9. That through all of the trials and tribulations thrown our way, wallowing in it or asking “why me?” doesn’t help anything. Acceptance is the key to dealing with this.
10. That while we continue to wish and hope for a cure, we still need to live in the now. And while a cure would be absolutely amazing, there are other things like new medicines, technology, and devices that also need our attention because they make the day to day living easier. We know our daughter can live a healthy, active, productive life with type 1, and some new ideas, while they may not be cures, can address quality of life issues.
11. The people that we have met through this diagnosis, families with type 1 children, adults with type 1, people involved in the DAD world, and yes, friends that we have never met in person but interact with on-line, are some of the most important people in the world to us.
12. These children are some of the toughest, bravest kids in the world. If they each had a nickel for every time I heard some adult say “I hate needles” or “I could never do that”, these kids would be rich.
13. That sometimes children are forced to deal with situations that take a little innocence away from them. That forces them to grow up a little earlier than we would like. In a world that already tries to force them through media, tv, music, and video games, to be more mature earlier than ever, we should work our asses off for their benefit to cure and eradicate as many childhood diseases as possible. These are the innocents…
14. That dogs really are capable of providing an enormous amount of health benefits, both physical and mental.
15. That people really have no filter. They will stand in front of your children and talk about how their relatives had limbs amputated and died from this disease. Trust me when I say this, “we are aware of the risks associated”.
16. That the day we left the hospital with our daughter, I thought for sure we wouldn’t be able to keep her alive. I was more frightened than she ever was. I didn’t have any concept of how to care for her, I just knew that one slip up and I could kill her. I am here to tell you today that If I am capable of caring for a type 1 diabetic, so are you.
17. That 350 and 45 and 115 are just numbers. They do not define her as a diabetic or me as a parent. But that still doesn’t lessen the blow of a condescending look or a snide comment.
18. That with time comes experience. With experience comes confidence. And with confidence comes better understanding and management.
19. That it takes a village. And you won’t have one in the beginning. You will feel like you are all alone on an island. Even close family and friends really have no grasp of living with this disease. So you need to start building your village yourself. Ask for and seek out help. Get involved in the local JDRF or ADA. Join Facebook groups. Build it and they will come.
20. That some days I am perfectly happy to sit and explain all about the differences between the “good” and the “bad” kind of diabetes. That I am willing to explain that Major and Raven aren’t in training to be seeing eye dogs, that they really are ours. That yes, she truly does need them even though she is over there climbing a tree. That I truly am sorry to hear about the horrible, painful, slow death your family member had to suffer through. And other days I am not.
21. That yes, she really can eat that.
22. That my wife is an amazing superhero. That she does more in a day and night, keeps more plates spinning, handles more multitasking opportunities than most people do in a week.
23. That no matter how much I think I know, no matter how much I think I’ve learned, no matter how many times she has the same pb&j sandwich, no matter how many times i think I know exactly what her blood sugar is doing, diabetes reminds me that I don’t know anything, that it refuses to be controlled, at best it can only ever be managed.
What have you learned?