The other night Sara asked if I remembered what the day was. I didn’t, (yes, bad mom award here), but she reminded me it was her “diaversary.” (A diaversary is a diabetes anniversary) Then we both remembered it was ten years! She was diagnosed a few weeks after her sixth birthday, when she was in kindergarten.
We can barely remember what it was like without diabetes, which is sad in itself. She’s had diabetes 2/3 of her life. Those first months were overwhelming. I shed a lot of tears. I’ve learned so much over the past ten years; things I wish I and other parents never had to learn.
Even though Josh had been diagnosed that previous February, he was in middle school and able to perform more self-care. Caring for a 6 year old is much different than caring for a 12 year old. Which brings me to my first thing I’ve learned:
Diabetes is an individual disease.
- What works for one person does not necessarily work for another person. Girls are much different than boys, especially once they hit puberty. I’ve noticed Josh rarely gets ketones, but Sara will get them more frequently. Josh rarely goes over 250 but Sara can easily jump up into the 400-500’s. What one child is able to do for themselves, another may not be able to do. We do not need to make others feel guilty or judged based on what each child is doing or how well they are controlled. Everyone is different and even each individual is different from day to day. What works one day may not work the next day. Which leads me to my next point.
Treatment is not an exact science.
- Though we try and think it is an exact science based on formulas, we can only control one aspect of diabetes, and that is the insulin doses. We are unable to control many other factors which affect blood sugar, including hormones, glucagon, cortisol, amylin, growth hormone and the many other body systems that affect blood sugar. That is why what works one day doesn’t necessarily work the next day. People with diabetes and parents of children with diabetes have to play a game where they are always guessing what to do. Yes, they are educated guesses, but it doesn’t always work the way we want. Other factors come into play, especially with the hormones with teens and the growth spurts with kids, along with exercise that isn’t always planned for.
Diabetes requires a lot of education.
- In the beginning, the amount we have to learn is incredible. Within hours, we have to learn what diabetes is and how blood sugars are managed. We learn target blood sugars, how to check blood sugars on mulitple types of meters, what ketones are and how to check, the dangers of low and high blood sugars and how to treat low and high blood sugars, when to go to the hospital and when to treat at home, and the big one: counting carbs. It is an overwhelming time for newbies!
- Not only do we as parents have to get educated, we also have to educate those that care for our child. No longer can our child go off with another child for a playdate, go to school, or spend the night with someone without lots of educating the other caregivers. We learn what school IEP care plans and 504 plans are, and unfortunately how sometimes the school doesn’t want to cooperate with what the doctor orders or we know our child needs. (We have been blessed with school nurses who were great!)
- We find that some people are not comfortable taking care of our children and we have sad faces to deal with when our kids are left out of some activities.
We hear lots of inaccurate and unneeded advice.
- Once of the first things I tell new parents of children with diabetes is that they will start being given lots of advice from well meaning people, but most likely it will be inaccurate information. You hear how someone else’s grandmother drank okra juice and cured her diabetes, and many other things that do not work for type 1 diabetes. What most people know about diabetes is about type 2. I’ve learned I just have to ignore a lot of advice and take the time to educate only if it’s worth the time to me.
Diabetes is always in the back of our minds.
- Imagine kids that every time they run around at recess or have PE/gym class at school, or participate in sports that instead of getting to only focus on the activity, they have to constantly be aware of how they feel and whether their blood sugar is dropping.
- When our kids are away from home, we wonder in the back of our minds if their blood sugars are ok and whether their blood sugar will drop unexpectantly and they will know what to do. We worry about them having high blood sugars and ketones. As a mom of a teenager and now adult, I worry that they run out of the house forgetting their meter or not having insulin with them.
Things can go bad quickly.
- Unfortunately, children and adults with type 1 diabetes can end up in the ER and hospital really quickly. Going a few hours without insulin, having a bad insulin pump site, having a stomach virus and other illnesses can cause DKA or a trip to the hospital. One of the reasons for the worry that seems excessive from parents is that we all know without insulin and a balanced insulin/blood glucose system, our children cannot survive. Unfortunately, most of us have heard of children with diabetes dying, epecially those that are in the facebook support groups, where I’ve seen several parents post when their children have died from a low or high blood sugar. This is the world we live in, knowing that could be our child anytime.
There is an amazing diabetes community out in the web world.
- There are tons of diabetes blogs, facebook groups, twitter chats, and all kinds of diabetes things out in the webosphere.
- Parents of kids with type 1 tend to connect really quickly, mainly because what all we do is so hard to comprehend and understand unless you are actually living it.
There will be times or seasons when your child’s A1C will be higher than you want.
- There will be times when it’s high. You have to just accept it, learn from it, and problem solve how to get it back down. As kids grow, their insulin doses need changing. As kids begin doing more on their own, sometimes a bolus is missed or carbs are miscounted. You have to just learn and move on and do better. Don’t dwell on the possibilities of complications, because even those with good care and A1C’s have seasons where it is higher than they want. I’ve seen people with 50 years of living with diabetes who have no complications and lived through having no meters, old timey insulin and they are still doing well. (Though that doesn’t mean we don’t strive for better A1C’s.)
There’s incredible researchers out there in the field of diabetes.
- When my children were diagnosed, I would hear that in “5 years” there will be a cure. I have since given up on a specified amount of time. In the beginning, I spent lots of time researching what was being done to try and cure diabetes. I have grown somewhat cynical over the years, but there is good research out there and progress is being made. I hope the artificial pancreas will do everything automatically soon, (including bolusing on it’s own and eliminating finger sticks) but I really hope an actual cure without devices will be available. That’s why we all work and pray for a cure soon.
Unfortunately, we who have children with diabetes have been thrown into this boat we didn’t want our kids to be on, but I have learned a lot and made a lot of friends along the way. I’ve even become a CDE and now work with children and adults with diabetes. What have you learned since your child has been diagnosed? Please share and comment below!