Just when we start to let down our guard…BAM! Diabetes hits like a ton of bricks.
The past few weeks have been pretty uneventful. I feel like we have truly embraced our normal and taking care of our sweet child has just become routine. It’s almost as if the fates know these thoughts start going through my head “Take that diabetes” “We’ve got this” “We’re sleeping through the night” “She’s just like the rest of the kids on the playground” and BAM! Diabetes hits like a ton of bricks.
Just when we start to let down our guard a bit, we are smacked with reality. This past weekend Frankie and I decided to take the light rail to a swim meet to watch the kids swim, play with swim buddies and just enjoy the beautiful weather. Before we left I was on the phone with my mom who said “You really want to take the light rail and not have a car if you need to leave?” I knew what her undertones were “Do you really not want to have a car in case there is a diabetes related emergency?” I brushed off her comment, the funny thing is she gets that from me lately. I’m always the one who always wants to have an exit strategy. Always thinking about the what-ifs and highly unlikely scenarios. But come on, we aren’t going to skip the light rail, Frankie’s favorite form of transportation because it leaves us car-less. Hello, there is always Uberfamily.
Well, we’d been at our destination approximately 40 minutes when a bit of a panic came over me. She was running around with one of her favorite swim meet buddies, the 3-year-old son of fellow swim coaches. They hadn’t been running more than 20 minutes, when Frankie tripped and fell twice. Her first time tripping was when her foot hit a large divot in the grass — ok reason. The second time, I looked and there was no explanation. Mama instincts told me to check a blood sugar. 46?!? You’ve got to be freaking kidding me! I had checked right before we left the house (approx 75 minutes prior) and she was 188, which was perfect since I knew there would be lots of running around. Her sugar hadn’t been below 50 until this point, we have been pretty regimented about checking her when she plays and making sure she is eating lots of snacks. Ok, my kid is completely hypo-unaware, as are all 3 year olds. I embraced my new outlook of not freaking the fuck out, took a deep breath and treated the low. We sat in the grass, had a picnic of smarties, honey roasted peanuts, and did a temp basal decrease of 60%. The good news is she stayed in range the rest of the day. With the continuing running and playing and several uncovered carbs. Outside of a few quick blood sugar checks she looked like every other little one at the swim meet.
And you know what, life went on. It goes on every day. Fate just likes to remind us that we always need to keep our guard up just a bit.
100 days feels like a huge milestone, but the reality is it’s just 100 days into a lifelong disease.
This past week we had our 3 month endocrinology visit. As I’m sitting in bed, cuddling with my little munchkin, writing this blog, I’m having 2 very conflicting thoughts. 1) Has it really been 3 months already? 2) It’s seriously only been 3 months?!? I think this dichotomy of time exists in most experiences throughout life.
I truly feel like the last few months have been a bit of a blur. So many changes have taken place in our lives. October 1st, my husband moved into the head coach position for the swim club for which he was working. One week later, I accepted a new position as a pre-op RN at a different hospital — I was ready for a change of specialty and needed different hours. Hours so we didn’t have to leave our almost 3 year old home alone at 5:30am, I hear that tends to be frowned upon. Two weeks later, Frankie was diagnosed with type 1 diabetes. Damn, October was eventful. Luckily, my last day at my job was 3 days after Frankie was diagnosed. My new job was understanding and accommodating and allowed me to push back my start date. This granted me the opportunity to stay at home for 5 weeks and settle into our “new normal” — whatever the hell normal looks like. I’ll be forever grateful for the way timing worked out for each member of my little family.
Honestly, I can’t remember much between Halloween and Christmas. (Game 7 being the exception) Days were spent obsessing over numbers, counting carbs, checking blood sugars and looking at dosage charts. Nights were spent setting alarms, checking sugars, and then lying in bed for the next hour or so worrying about how her sugar would be in the morning and doing mental math (because obviously 3am is the best time for that). Those middle of the night (or early morning, depending on the day) hours were often filled with tears. Hours were spent worrying and tears were shed over events that are years off. “How will this affect her swimming?” “What about when she moves away and goes to college?” “I hope she has boyfriends (or girlfriends).” “I really hope she has great control before she considers getting pregnant. What if she never wants to be pregnant because of this?” “I hope she doesn’t grow up to resent us.” OK, Beth, slow your roll. Frankie is only 3 years old. There will be plenty of tears, fights, and opportunities to yell at diabetes throughout the years. These are the moments that I feel “It’s really only been 3 freaking months?!?” And luckily, since some time around the 6 week mark, these nights have become few and far between, the tears aren’t as easily triggered and don’t flow as freely.
Frankie was a perfect kid before Halloween and now she is a perfect kid who happens to have type 1 diabetes. She inherited her father’s easy going attitude, which has served her very well the past few months. They say kids are so adaptable — it’s totally true. This diagnosis rocked our world completely, but you would never know that it shook hers. Frankie never cried over shots, handles pump site changes like a champ, can do her own finger pricks without flinching, and knows she has to ask us if she wants to eat something. (So that we can count the carbs and dose her, she’s not on any food restriction). Most of our friends and family have been nothing but supportive. Not even blinking an eye when we have to check a blood sugar during a playdate, or whip out the blood glucose meter at the table at a restaurant. No sideeye from waitstaff when we ask for amazing pancakes (thank you Snooze) — hold the syrup and powdered sugar.
Luckily our friends know us well enough to not offer “cures” or tell me “there is an oil for that.” They know those comments would be met with eyerolls and science. We have received a few “That’s a lot of stuff to haul around for one little girl” “Are the doctors sure about the diagnosis?” “Are you positive she’ll have this forever?” Yeah, yeah, it is a lot of stuff (we take our backpack with supplies, and lots of food, everywhere we go), but it’s all necessary. Yep, for sure type 1 diabetes, they don’t give a 2 year old a lifelong diagnosis without being positive. Yep, she will have it for-fucking-ever, until there is a cure. These are the opportunities that I try to educate and hope that the people making these comments are willing to listen. These are also the comments that I personally have to not let get under my skin. I have to take a deep breath, find my inner ohm, and realize that some people won’t ever fully comprehend what we are going through on a day-to-day basis.
It’s probably a compliment that some people don’t understand. It means we’ve seamlessly transitioned to our new normal. We’ve adjusted so well that most people we meet, even other type 1 parents, are surprised that we’ve only been going down this road for 3 months. These are the moments that make me feel like “Wow, it’s really only been 3 months?” and I beam with pride on the inside. Then I look on the dining room table, the bathroom counter, the bedroom floor, random corners of our home, and see that our normal includes test strips everywhere (those little suckers seem to magically multiply). Just one more reminder that we are surrounded.
I also feel like I have aged 3 (or maybe 30) years in the past 3 months. 100 days of not sleeping will do that to a girl. I’ve matured, yet at the same time I have become a bit more selfish than I was before. That said, I acknowledge that I have put a barrier between my little family and the outside. The mama bear in me has been awoken.
If you know me personally and feel like I talk too much or post too often about diabetes, that’s on you. I’m offering no apologies for frequently talking about something that impacts my family on a daily, hell, on an hourly, basis. I have this overwhelming desire to educate people about type 1, how it affects my family, and all of the myths that surround the disease (even, and especially, in the healthcare realm). I’m pretty sure it is now my duty in life to spread awareness.