Just in time for the holiday festivities, "flu-mageddon" invaded the Randall house this week with Paul and Luna both sick. Forcing us all to slow down and leaving me to nurse them back to health all while doing everything I can to avoid catching it. Awesome! And while we didn’t have the most productive week of the year, it did provide me with a lot of time to reflect. As clichè as it sounds, the holidays provide a perfect backdrop for reflection. This year my thoughts are ever consuming, as it was around this time last year things with Luna began to change.
My holiday mind is riddled with memories of Luna using the restroom frequently and drinking excessive amounts of water. These memories drive me insane, but also make me feel really sad. I’m sad at how annoyed I became when she made me pull over on the way to her Christmas recital because she was just SO thirsty! I’m mad at myself for not realizing how skinny she was, even after my friends kept commenting on how tiny her frame was becoming. Even writing this now makes me feel like I should have known, but the reality is, I didn’t. And after months and months of racking my brain, trying to make sense of it all, I finally realize that I need to forgive myself. I have to let it go and believe that even though I didn’t see it coming, I was able to recognize that something wasn’t right.
The mind is funny that way. Well, my mind is. It’s easy for me to obsess over every little sign I missed and super hard for me to acknowledge that my strong maternal instincts are what saved my girl. That is a fact. Luna wasn’t in full DKA at diagnosis and doctors kept saying how we caught it early, but in that moment I wasn’t ready to receive the message. All I did is focus on was how this happened and how I didn’t know.
It's heartbreaking to know that last year, unbeknownst to us; we celebrated our final “Diabetes free” holidays with our daughter. I remember we made the most decadent cup of hot chocolate on Christmas morning and drank it "worry-free." I don’t want to think this way forever. I want to remember the smile on her face when the whipped cream got on her nose and the way she closed her eyes when she sipped. I want to so badly focus on those memories, it's human nature to long for only happy memories. The truth is that all memories have value. Perhaps hard memories are easier to remember because they teach us lessons or at very least help us gain perspective.
So while our Christmas festivities have been derailed due to the flu, I’m not going to let it take away from the fact that we got to spend an entire week together, watching movies, making yummy low carb. holiday treats and annoying each other to no end! Isn’t that what the holidays are all about anyway? I wouldn't say that I'm thankful for the flu, but at the end of the day (and in between doses of Tami-flu) I'm thankful for downtime it provided. I'm also thankful that for the first time in my life, I didn't waste my end-of-year recap thinking of ways to improve myself. I don't want to resolve anything. I want to enter the new year loving myself. Which is no easy task! Even writing it, feels heavy. But I'm ready to let go of some guilt and I'm ready to stop questioning the unknown. I'd like to think that we would have lived our life differently knowing that our daughter's life would change in an instant, but I've realized that there's no sense in even thinking that way. What I know for certain is that life is all about moments. We need to remember to live in every moment, try to find the silver lining in even the worst because in an instant everything can and will change.
Merry Christmas from me and this little blog of mine!
Here we are again, after months of writing many personal pieces; I needed a break. I’ll be totally honest and say that being vulnerable is uncomfortable for me. I wrote a few pieces, but I just couldn’t bring myself to post them. I finally came to the realization that I needed a break from my own feelings. I needed to get out of my head and to take a moment to be present and let life pass without being overly conscious of every instance. As I’ve said in the past this disease forces you to live SO consciously that not doing so feels like a vacation.
But alas, the time has passed and a lot has happened and I’m ready to share again.
The biggest change in our T1D journey is that Luna is finally out of the “Honeymoon Phase” of her disease. The honeymoon phase is a period after diagnosis where the remaining Beta Cells in the pancreas still store/produce insulin. This period is both a blessing and a curse. A blessing, in that very little insulin, is required to cover carbs. For example, Luna’s insulin to carb. ratio was 1unit of insulin for every 20 carbs consumed during honeymoon. Now her ratio is 1unit of insulin for every 8 carbs, double the amount of insulin is needed to cover her meals and snacks. She doesn’t necessarily take more shots than before, just the dose is different. And a curse because the honeymoon period is tricky to manage because you literally have no idea how much insulin the pancreas is still able to produce! Meanwhile, we are following a set ratio, which leads to many bouts of low blood sugar. And that my friend is terrifying! So after a solid 9 months of “honeymooning” (horrible name, by the way! Honeymoons are supposed to be fun and relaxing. This is more like the calm before a major storm), all her Beta Cells are officially dead, removing yet another variable. Not to say that anything about this disease is a constant because it’s definitely not! The only constant is that Luna is insulin dependent. The rest of it sort of depends on calculations, timing, and luck.
For the record, this is only our experience. The “honeymoon” phase can be long or short or non-existent. It all depends on the person.
Another change is that Luna decided to give Dexcom a try. Dexcom is a continuous glucose monitor that is made up of three parts; a sensor, a transmitter and a receiver. The sensor is the part that is inserted under her skin. The transmitter is the tiny computer attached to the sensor which communicates her blood sugar readings every 5 minutes to a receiver. Dexcom provides a receiver and you can also use a cell phone as a receiver. This tiny device has provided so much peace of mind! The best part is the alarms that sounds when her blood sugar is below 80 or above 250. Talk about an instant anxiety reliever! Depending on the day she’s had, it can eliminate overnight finger pokes. We still do a finger check before meals or any necessary corrections. As with anything, Dexcom isn’t perfect and we always want to have as much information as possible before treating her. Luna has a love/hate relationship with her Dexcom which is why we remain flexible and allow her to take breaks from wearing one. I personally hate having anything on my skin, so I understand! Plus, it’s her body and she will have the ultimate say. (More on that topic at a later date) Paul and I both agree that life with Dexcom is pretty sweet- unintentional Diabetes pun.
We also agree that life with Luna is pretty sweet! (again) In a few days, she will celebrate her 11th-month dia-versary and she remains as resilient as ever. The last few months have tested us in a variety of ways and through it, all Luna has remained the light that has seen us through. She has proven to be a fierce advocate for herself and for her T1D community. She has lent her voice, her time and her efforts to raising money, volunteering and celebrating her fellow T1Ds. She may only be seven years old, but Luna has a purpose and is on a mission to make it known. Every single time you like, comment, share or generously donate it truly means the world to her and to us. Thank you.
It should be noted that this is not my best writing, but with the one year anniversary of her diagnosis lurking around the corner I find myself in a bit of a fog. What I am clear on, is how much writing helps me process all that has happened. Reading your comments and emails remind me that I'm not alone in my feelings. My soul is eternally grateful.