November is Diabetes Awareness Month, and every year I ponder our family's journey. Over the past 12+ years we've seen changes, transformations, growth, frustration, amazing advances in technology and management.... things have come a loooooooong way since my own dad was diagnosed as a Type 2 diabetic when I was in Junior High School (back in the day when you sharpened your metal needle before injections and a finger poke seemed to take a chunk of your finger with it each time). The BIG thing we've learned along the way is that there is no guarantees: you can do everything precisely right and something can (and usually will) go downhill.... much like in the video up there of Gracie's AMAZING ride yesterday. It was nearly picture perfect, right up through her last jump... the landing, however, was monumental, just not in the way you'd like it to be. We've watched over and over to see if we could see what caused her tumble, all to no avail. It was a near perfect jump; maybe she looked down for a split second, causing everything to adjust mid-air and her to land back in her saddle a bit too far forward causing both her and her horse to end up unbalanced and ultimately for her to end up "diving" to the ground. But you know what? Just like with Type 1 Diabetes, she collected herself, hopped back up, dusted herself off, and climbed right back on to her horse to finish her ride. That is what Warriors do.... they finish well and strong, no matter the struggles they face along the way.
Most all of you know our story: Gracie was 14 months old when she was Diagnosed with T1D; a mere baby. She'd gotten the chicken pox vaccination 6 or so weeks earlier, then ended up with chicken pox the same night her baby sister was born. She never bounced back from that, matter of fact, she seemed to get weaker over the following 3 weeks. She had NO stamina, and I'd find her sound asleep in the middle of the floor after playing for half an hour. She was drinking water like crazy, eating non-stop, going thru diapers like nothing I'd ever experienced (even requiring middle of the night baths and bed changes because of it)...then one night, after finding her soaked yet again, she was so weak she couldn't even hold her little head up on her own. Bathed and swaddled in fresh PJs, she laid on my chest for the rest of the night, sleeping, while I was afraid to lay her down not knowing what was wrong. There were no typical signs of sickness... no fever, no cold symptoms, no sore throat or tugging at ears, nothing you look for in a baby. Early the next morning, the doctor sent her for lab work trying to figure it all out as well. As I sat in the exam room for what seemed like hours (but was actually only about 40 minutes) holding my limp, lethargic baby, I feared the absolute worst. So many things went through my mind, everything horrible, but never once did I think "diabetes". The doctor walked in, knelt down in front of me and said two little words that turned our world upside down...."She's diabetic". The tears flowed hot, burning tracks down my cheeks. Relief washed over me.... she wasn't dying (Well, at that very moment, that was a very real possibility had we not caught this right then, but I didn't realize that). A week in the pediatric ICU, lots of education for Craig and I, too much to actually wrap our minds around, and she was sent home. A new "normal" had begun. A new life full of testing, injections, counting and monitoring everything she ate, monitoring all her toddler activities, no longer able to sleep through the night again due to multiple night time testing, poking her tiny baby fingers to get drops of blood numerous times a day... all just to keep her alive and healthy. Within a few months we'd fallen into a new "normal" without really realizing. A normal that entailed learning to roll with the punches on a daily basis, learning to finally understand that change is to be expected moment to moment, and that once you think you've figured it all out, you'll be thrown for a loop again because maybe it's a full moon and that's going to cause blood sugar issues (yes, believe it or not, it actually does. Just ask any T1 parent). Over the next decade however, we rode the ups and downs and adjusted with every rolling change and tweak that needed to be made. We made it through the toddler years, the pre-school age, all of early childhood and just about into the teen years. Ebbs and Flows of T1 can be rough and each phase of life has it's own challenges. We were preparing for the challenge of T1D in the teen years, when we once again heard those same two little words that would cause our world to upend itself yet again....
Last fall Sarah (16 years old) hadn't been feeling all that great since recovering from walking pneumonia earlier that spring. We'd treated each symptom as they appeared, not really giving it much thought, but she just wasn't fully recovering... matter of fact, she seemed to be getting worse. Off to the doctor again. The doctor agreed that something was up, so she ran some lab work. Like me, she was expecting to see results showing inflammation issues; she was blindsided when she saw that Sarah was actually T1D. That was not a phone call she wanted to make, but make it she did...."Dawn, I don't really know how to say this; I'm completely shocked myself. Sarah has T1 Diabetes". WOW! How is this happening????? I could almost feel a physical slap across my face as those words hit me. My mind started spinning; only this time it wasn't with unknowns, it was with all that we actually know about life with T1D and how on earth was I going to tell our sweet 16 year old daughter, that with just 2 little words her life was forever changed. I texted Craig who was a footage with Sarah at that particular moment. We let her blissfully enjoy the game.... no reason to ruin a sweet father/daughter date. But when she asked me at dinner if the doctor had called, I knew there was no putting it off. I had to tell her the truth, "yes, she called. I'm sorry sweetie, but you have T1D." NO NO NO NO NO NO.... that was all she could say as the tears flowed freely.
Here we are, over 12 years down the road from Gracie's diagnosis as a baby and over a year on this same journey with Sarah as a teenager heading into life as an independent young lady. I'd be lying if I told y'all that it was pretty easy to deal with all this, that we just keep chugging along as normal. Our normal is not what most others would say is a normal life.... but it's a beautiful life. We choose to keep our sense of humor in all of this, to not drown in self-pity (which can be a challenge some days), to stay very real, and to support and encourage others through their own challenges. Our life is about numbers, and trust me that can be a challenge in and of itself. Craig nor I have truly slept thru the night in over a dozen years, as we are up checking on the girls every couple of hours. If you think that is overboard, think again.... T1D kids can easily slip away during night from low blood sugar that goes un-noticed till morning. Packing for a day trip (let alone a vacation) is no small task with all the extra things you must bring along "Just in case". Not to mention all the extra stops along the way for much needed bathroom and snack breaks (T1D kids drink more water than "normal"). A simple cold or virus can easily land them in the hospital. iPhones are not indulgences, they are medical devices and lifelines. Sleeping in isn't laziness, it's necessary at times due to being up for hours in the middle of the night managing blood sugar (which one reason I'm so thankful we homeschool and have the flexibility to adjust our school day schedule easily). Normal? It truly is only a setting on my clothes dryer. But I LOVE my life and my role as a T1 Mom to two amazing Warrior Princesses. They battle to stay alive and healthy every single day. They face every challenge head on with the confidence and knowledge that God is 1- in control, they aren't and 2- God knows what's going on because He is the Master Architect of our lives and has a perfect plan according to His perfect Design.
That video up at the top is the perfect example of life with Type 1 Diabetes.... smooth sailing, everything going as planned...then BAM! You get thrown for a loop. What you choose to do at that moment sets the course for the rest of your journey. I hope we all do what Gracie did; Get back up, dust ourselves off, and finish the ride with grace and courage.
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