TEN: Learning Experiences
July 25, 2015 marks ten years since my daughter was diagnosed with type 1 diabetes. In honor of this milestone I’ll be sharing a summer series of posts entitled TEN. From learning experiences, to awesome experiences, and a few things in between, I hope you’ll stay tuned!
To kick things off, I spent some time reflecting on some of the lessons this life has taught us over the last decade.
1) There are no bad numbers. Glucose levels rise and fall. Sometimes they rise REALLY high and sometimes they fall REALLY low. There are high numbers, low numbers, and target numbers. Each number is merely a piece of data to help manage the big picture. They are what they are: high, low, and target. My daughter’s self-worth has nothing to do with the number on her meter. You child’s place value can’t be measured by a glucose level either.
2) It’s never easy. Watching your child succumb to low blood sugar or fight through a stubborn high excursion isn’t ever easy. Accommodating the need to carry supplies in every situation life throws your way isn’t ever easy. Constantly dealing with pharmacies, insurance companies, and medical supply companies isn’t ever easy. Fighting school systems isn’t ever easy. Losing sleep, financial resources, and time spent dealing with the diagnosis isn’t ever easy. Fortunately, we are capable of doing hard things. So are you.
3) Comradery exists. The friendship I’ve discovered in other adults with type 1 diabetes and parents who are also raising children with type 1 diabetes is irreplaceable. Having the courage to seek out other people who understand this journey is one of the best decisions I ever made related to managing my daughter’s diagnosis. There is no reason to travel this journey alone. From local ADA and JDRF chapters, to blogs, to Facebook groups, to Twitter, there is friendship waiting for you if you’re willing to embrace it.
4) Technology makes life better. I cannot put into words how thankful I am for my daughter’s OneTouch Ping ® insulin pump and cell phone. The ability to administer micro-precise insulin doses that cannot be drawn up in a syringe revolutionized this journey for us. The ability to see her glucose data in a real-time graph with arrows to indicate the direction and rate of change was a game changer. Being able to keep in touch via text messaging and phone calls has provided both of us with the confidence to allow her independence to bloom. Don’t miss the boat when it comes to technology!
5) I needed help. Sometimes I still do. That’s okay. There was a time I had a newborn, a toddler, and a 3-year-old with type 1 diabetes. My husband was gone 12+ hours a day; I worked in the evenings; we had very little local support, and the economy crashed around us. I needed someone -- someone to help manage her when I went into labor, and when my husband needed surgery; someone who could care for her when I needed to run an errand; someone who could take my other two daughters when she broke her arm; someone who could watch my front door for a package when I knew insulin would be arriving, but I couldn’t be home all day to make sure it got inside, out of the desert heat. It took some time to learn how to ask for help. I don’t know what I would have done without the people who showed up to answer my pleas. If you need help, ask for it.
6) People do things differently than me. My way is the only right way. Period. Okay, I’m kidding (sorta). My husband has figured out a management style that works when he’s in charge, and my daughter’s skills have emerged demonstrating her own sound judgement. Her team of school nurses know how to manage PE without my input, and figured out that she always goes low during assemblies (we have no idea why, but it happens all the time!) The truth is that, no matter how meticulous I have been about micromanaging the numbers for the past ten years, other people have developed systems that work too. It’s okay to give up some control. Give it a try, and you’ll see what I’m talking about.
7) Advocacy is a skill worth teaching. When she was four years old, she overheard me on the phone dealing with a hassle over test strips. I’ll never forget the moment she asked me if she could talk to the Pharmacist herself to explain why she needed the right amount of test strips. From that moment on, my daughter began openly advocating for her rights, as a person living with type 1 diabetes. From local lawmakers, to state legislators, to national congressional representatives, she intends to be heard when it comes to issues that affect her health and the type 1 community. Learning this skill now will most certainly benefit our children later in life -- not just as it relates to diabetes, but in all things.
8) There’s always something new to learn. Just when I think I’ve learned everything there is to know about my daughter and her diabetes, I realize I’m wrong. There’s a new research study, a piece of technology, a new phase in her growth and development, and with each new “thing” comes an opportunity to learn something. Never assume you know everything.
9) Siblings count. My daughter’s biggest cheerleaders in life are her sisters, and they have taken an active role in learning how to support her. By age three, they each knew how, why, and when to call 911 in case something happened while in the care of a babysitter; by age five, they were able to check her glucose level without help; by seven, they were helping to educate other people about her care. Aside from all that stuff, they wait patiently when ice cream has to be postponed because of high blood sugar, and they don’t complain when a low blood sugar interrupts a bike ride. They are an integral part of the team, and I can’t imagine doing this without them.
10) Time flies. It seems like just yesterday we were coming home from the hospital loaded down with handouts, prescriptions, and anxiety. I can’t tell you every number her meter has seen, but I can tell you they have come and gone faster than I ever thought possible. In the hardest moments, I’ve learned to remind myself that whatever is happening will end eventually and life will get back on track. The waves have come, crashed, and washed back to sea, but we’re still standing. When my daughter looks back on her childhood, I hope her diabetes doesn’t cloud the experience. I only have one shot at this before she’s grown and gone. The next time we meet a TEN year milestone, she’ll be an adult. Don’t waste a second of the awesome stuff, and try not to get bogged down by the rest.