Over the last few weeks I have become insanely, even creepy close with Sarah of Sugabetic.com. We have spoke about everything under the sun, moon and stars. One of the most intense conversations we had was when she had mentioned to me that as a child she was scolded for "bad" readings. Yes. High sugars were looked at as her fault. My heart broke. I wanted to walk my ass down to South Carolina and give her the biggest hug. How could this be? Why? I just didn't understand. From the beginning of Justice's diagnosis no matter how high or low the reading Justice was never blamed, questioned, or anything of the sort. Yes there were times I would freak out, be scared but never did he think it was HIS fault. As he says "Diabetes is dumb". It usually went "shit, ok let see how to fix this". Now to the point where Justice will test and see lets say see a 300 and go "Crap! Mom, I'm 300, site change?". I believe in every sense of this disease it IS a team effort. I allow independence but not relinquish my control or ever make him feel like I will not always be by his side. Always reminding him its JUST a number. We will fix it together. ALWAYS. Whether 7 or 27. I One night Justice said to me "You're the perfect mom for me, you know how to take care of me and my diabetes so wonderful". I want everyone to hear how Sarah grew up with Diabetes, and the impact doing anything other than being your child's friend, and partner can hurt them in ways you cant even imagine.
D-Management is a Team Effort
With a play on words, imagine the words of Sophia Petrillo, "Picture it", South Carolina, 1988... a little four year old girl, full of life and energy, was diagnosed with Type 1 diabetes. From that day until the girl was old enough to handle her disease on her own, her mom took care of everything - every shot, every finger poke, anything the little girl needed. When her mom thought the little girl was ready to handle her d-management on her own, she did just that. She left her to her own care. Finger pokes and blood sugar readings were the girl's to handle. Of course, she would ask every now and then to be sure the girl took her shot, or asked what her blood sugar was, but it was never something they did together anymore.
That girl was me. When my mom turned my diabetes care over to me, it really was up to me. Sure, she'd ask about how my sugars were doing and things, but ultimately, diabetes was mine to control. If I had a good day, that was fine. If I had a bad reading, it was terrible and I was fussed at as if every bad reading was my fault. There were times when I would lie about my glucose reading just to keep from being fussed at because they were made to be my fault. Truth was, I didn't know what would be causing it. All I knew was that if I told my mom my actual reading, I would be fussed at for it being so high and be drilled about what I did wrong, never hearing, "Ok, well, that's high. Lets see if we can handle this." There were even times when I would be high for numerous readings, and just to avoid even seeing it myself, I would skip the test all together and would just pick a number out of the air to tell my mom if she asked.
I'll never forget the days of wiping the old Accu-chek II strips mid test with alcohol to lighten the color so I would have a lower reading. (This was back in the day when you applied the blood to the strip, pushed the button on the meter, waited, and mid-way through, wiped the blood off and put the strip in the meter for it to read your bg.) That way when I showed my mom (if she ever asked to see it), it would be a lower number and thus avoiding the scolding I would hear. After all, this is my disease to handle, right?
On another occasion, this point was reiterated to me when we left my doctor's office. We pulled out of the parking lot after a long silence while sitting at the stop sign, not waiting for cars to pass. We had just heard the news of my latest A1c - 13.6. This was reflective of an average blood glucose of 407! My mom laid into me like white on rice. Of course, by now I had just learned to block out most of what was being said to me, but one thing stuck....
"This is your life. This is your diabetes. Why can't you just do what you're supposed to do?"
... as if to say that if I did everything right, I would never have a problem with my diabetes.
Looking back on my young life with diabetes, there was plenty of reason for me to not be alive today. Of course, my mom was there for me the best way she knew how to be, and maybe if she had someone or some place like the DOC, she would been able to react differently because she would have seen diabetes in a different light, and knew how to handle various situations in different ways.
I grew up being ashamed of my diabetes. Ashamed of the numbers. No diabetic child should ever have to deal with what I did because of a parent that just didn't understand. No diabetic child should ever have to lay in bed at night crying because they feel like they have been cursed with a disease that makes them a burden to their family. No diabetic child at the age of 12, 15, 17, or whatever the age may be, want to take an overdose of insulin before going to bed one night just so that they could peacefully drift into death and free their family of the burden the child feels they are to their family. I did this and it was a miracle that I even woke up that night and came to my senses to treat and keep living.
When I started talking with Alexis about her issues with the Spirit pump for Justice, it brought back a flood of memories for me as a child. Memories that were hard to remember. She would be frustrated with the pump and his bg numbers and I would end up mistakenly getting infuriated on Justice's behalf. This was quickly alleviated by lots of chats with Alexis as she reassured me that I was wrong in my thoughts. What I didn't understand at the time was Alexis only fussed with me about the pump to get her frustrations out, and she always showed Justice that D-Management was a team-effort.
Diabetes in children should always be a team-management-effort. Take note of the highs or lows and handle them in the best "We can do this" manner possible. Stay in their D-business. Check their meters behind them, even if you have to when they're asleep. Be their support and backup, because even when it seems they don't want your help or don't need your help, they do.