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.
I’m going to start by saying, I’m great in emergencies. Working high risk labor and delivery most of my career has taught me to keep a cool head, scan the room, anticipate needs, and act quickly and accordingly. Even when all of the commotion makes the room seem chaotic, medical professionals know things are under control, especially when you have a great team. Many of my co-workers would probably agree with the sentiment that I’m great in emergencies…at work.
Why can’t a cool, calm head be something that translates to “home me” as well? I’m an utter shit-show in emergencies when they involve people I care about (Ugh, that sentence is brutal on my soul to even type). You can ask my best friend about the time her toddler was bitten by a dog and I completely froze, ask my carpool buddy about the time she choked on a pill and I stood in the corner with nervous laughter, which she could hear the entire time…ummm, on second thought, please don’t. There is something about things happening to the people I love that just sends all my calm and training out of the window. This is especially a bad thing because people tend to look to me to jump to action because “You are a nurse”. But it is a good thing to know my limitations, and I know others can be more helpful during emergency situations.
Honestly, I think this goes along with my glass is half empty attitude. When things start to go south, I think of the worst case scenario. This was challenged at home a few weekends ago. Frankie had a random stomach bug. (Crap, where did we put that sick day protocol?) She puked while we were fighting a stubborn low — couldn’t get her up above 70 (her endocrinologist wants her between 100-180 as a reference point). We were at the library, of course random puking couldn’t happen at home. As soon as we got home, I checked ketones 4.2 — shit, over 1 and we’re supposed to call the doctor and give extra insulin. “How the hell am I supposed to give insulin when I can’t get her sugar above 100?” “Oh my god, we’re going to have to go to the hospital?” “Mom, you go pack a bag while I call the BDC.” Yep, all three of these sentences came out of my mouth while I was dialing the phone to talk to our endo. (I realize now, it may have been slightly dramatic)
I was pacing as I was awaiting the call back from the doctor on call, I called Jason to let him know what was going on (because obviously the one person who keeps me calm was at a swim meet out of town), and I was throwing some clothes in a bag for myself (you know, since I was sure we were going to the hospital). The endocrinologist called back and was totally nice, told me to decrease basal rate on the pump (duh, less insulin will allow her sugars to go up), reassured me that the ketones were starvation ketones (yep, hard to have DKA when your sugar isn’t above 100), and encouraged sugary fluids so we could hopefully flush out the ketones and attempt to get her sugar high enough to give insulin. I took a deep breath and decided to tackle the task at hand, and remembered all of my freaking nursing education and how the human body works. The rest of the night went off without a hitch (except that my atypical 3 year old doesn’t like to drink anything sweet, so much for treating lows with juice), sugars came up above 100, ketones came down with lots of fluids, and she only puked 1 more time in the middle of the night. Frankie survived her first sick day with type one. Although, I was running around like a chicken with my head cut off. What the hell am I going to do if an actual emergency arises??
That said, I’m going to work on changing my home emergency response, my fight or flight is going to get its shit together. I need to, for my family and for myself. I need to remember to take a deep breath, take a good look around, assess the situation and act accordingly. If I can’t, I’m never going to survive this stressful, beautiful life we’ve been given.
Our personal D-Day. October 31,2016. Halloween. The day our little one was diagnosed with type one diabetes.
My husband called me at work with the number I didn’t want to hear. He had taken our almost 3 year old daughter to the pediatrician to get checked for diabetes. I’m a nurse and the insatiable thirst, excessive urination, and increasing appetite had set off red flags for me that I could only ignore for so long. He called and only said “It’s over 500.” I instantly started crying, full tears right there at the nurse’s station. My co-workers, couldn’t have been more supportive, hugs and boxes of kleenex came flying my way. Since our daughter, Frankie, was acting ok and not having any change in her level of consciousness the pediatrician let us drive ourselves to the hospital. I met Jason at home to get our stuff together. On the way home I called my mom to see if she could come down from the mountains and stay with our dogs since we had no idea when we’d be back.
An hour later, we were on our way to Children’s Hospital of Colorado ER with our bags packed. Here they checked Frankie for DKA — luckily she wasn’t in it; however, her blood sugar was now over 600. The beauty of being a nurse, my daughter isn’t scared of hospitals at all. And luckily my daughter used to visit me at work regularly when I worked at Children’s. It was also good, to keep me distracted, to have the support of two of my former co-workers and friends to come hang with us while we were waiting for a room upstairs. Our little munchkin was a trooper, not even a single tear with the IV start, blood draws, etc.. It helped that the child life specialist was amazing and since it was Halloween all of the nurses and techs were dressed up. Frankie’s main ER nurse was a kick ass ninja turtle. We finally got to our room on the 8th floor around 10:30pm and then we were discharged before 7:30am, so we could head to the Barbara Davis Center (BDC) for a full day of diabetes education. Damn, that night was a whirlwind. It was full of tears, both of sadness and anger.
I am so thankful for the BDC. If it was our lot in life to get this diagnosis, then it was fate that we were in Denver at the time. BDC is one of the top juvenile diabetes centers in the United States and it’s easy to see why. From that very first, information filled day, we’ve been supported immensely. November 1st we were assigned an entire team of medical professionals. A social worker, a registered dietitian, a registered nurse, a nurse practitioner, and a pediatric endocrinologist. Sounds like I just introduced The Breakfast Club. There were confessions and lunch, but no dancing montage. (“Don’t you, forget about me…” Insert air fist here)
Everyone did a great job explaining everything to my husband and me. Giving us plenty of time to ask questions, practice blood sugar checks and injections, and just giving us reassurance. Near the end of the day, I realized we had been paired with the correct endocrinologist for us. We were talking baseball and great World Series games. He apologized to my husband for speaking so much to the RN in the room as he was writing down websites and we were talking research. I looked at him and said “Since I apparently can’t treat this with essential oils, can I at least get some vegan insulin?” He looked at me, smirked and laughed. At that moment I knew he was the right endocrinologist for us, and that this was going to be okay.
And that is the day, ironically a day that revolves around strangers giving candy to children, that we found out that our daughter was just too freaking sweet (literally).
And of note: Our beloved Cubbies would go on to win the World Series in the best ever game 7, 1 day later on November 2.
It’s a question that has become a double edged sword for me.
“How did you know?” This is the number one question we are asked after people find out our kiddo has type one diabetes. It’s a question that I sometimes dread to answer. It’s a question that has become a double edged sword for me. I get to educate people on the signs and symptoms of type one diabetes, especially in kids, which I think is extremely important. Knowing these could save someone’s life. However, I also have to admit to myself that I ignored the signs and symptoms longer than I should have.
I should preface this with, I tend to be a hypochondriac about health things at times. Working high risk labor and delivery for 13 years and seeing all the complications in both women and fetuses has made me this way. Those who know me, also know that I am a bit of a pessimist, I’m often waiting for the other shoe to drop. So, when I said to my mom, my husband, and a few co-workers “I think my kid is diabetic.” they all had the same reaction “You are overreacting.” “The odds are so slim.” “Just take a deep breath, she’s fine” I took some deep breaths and I went about our life as usual.
The hardest thing about the signs and symptoms of type one is that they can all be explained away by a variety of reasons or even written off simply as part of a growth spurt. I’m going to tell you how “we knew”. Which signs and symptoms my daughter had, and how it was easy to ignore them at first.
1) Insatiable thirst. We live outside of Denver, we live at an elevation of 5869ft. We have extremely dry air. Everyone needs to drink more water at altitude in order to stay hydrated. My entire family carries around water bottles at all times, as do the majority of our friends. We never gave my daughter juice, she only drank water and milk. A few weeks before she was diagnosed, she stopped drinking her night time milk. Her water intake increased throughout the day, but I simply chalked it up to no longer drinking night time milk, makes sense she would replace one liquid with another in order to maintain hydration. It also is hard to keep track of a toddler’s water intake. I was filling her water bottle, my husband was filling it, at time she was even filling it since she could now reach the water dispenser on the fridge (damn long arms and puddles on the floor). One day I really started paying attention, pretty sure she drank over 120 ounces of water. “OK, now that is a lot of water.”
2)Excessive urination. She wasn’t potty trained. She was our first kiddo. She was drinking a lot of water. We never limited fluids before bed. Argh!! What is a “normal” amount of urine for a 2.5 year old?? We had to change the bed a couple of times a week because she would leak out of an overnight diaper; however, she was such a heavy sleeper and would sleep a solid 11 hours a night. When I say change the bed, that may be an understatement. She would wake up in a pool of water with her overnight diaper saturated to the point that we could wring it out if we would have wanted to. The final straw was when we threw an overnight diaper on her, put her in the car, drove 50 minutes to the zoo and her carseat and pants were soaked by the time we got there. “OK, now that is a lot of urine.”
3)Hunger. When this symptom happened, I was ecstatic. Our toddler is outgrowing the picky toddler stage and eating like a regular human being!!! Her appetite was back with a vengeance. Breakfast, lunch, dinner, snacks, oh my! “OK, that is a lot of food for such a little body.”
4)Weight loss. I stare at my child every day. She’s so damn cute, I can’t help it. And as she is growing and learning, I’m just in complete amazement of how fucking cool this little person really is. I really didn’t notice the weight loss on a daily basis. In a few pictures we had taken I thought “oh, man, where did my baby go?” I thought she was finally getting taller and losing her toddler chub and starting to look like a little kid. When we weighed her she had lost 2-3 pounds, “OK, that is a lot of weight when you only weighed 33 pounds.”
5)Mood changes. HA! How the hell were we supposed to assess this?!? She was 2 years, 10 months at diagnosis. How do you even know if your toddler is having mood changes when she is almost a threenager? A girl who, I am proud to say, takes after her strong-willed, opinionated, stubborn mom. A girl who was starting to show that strong will at every possible chance. The whining was new, but I thought we were moving into the tantrum stage. The biggest mood change that we noticed was she wanted to be carried a lot and was starting to choose TV over going outside or to the park to play.”OK, this is a serious change from my active crazy, running, jumping, climbing kid.”
It’s a hard thing to admit as a parent that something is wrong with your kid. I spoke with a co-worker who had a 4 year old son diagnosed 5 months prior to mine. She asked about all the symptoms and encouraged listening to my mama gut and told me that things can get worse quickly (I’ll be forever thankful for her advice and push in the right direction). I decided we couldn’t ignore the signs any longer. My husband took our daughter to our pediatrician and we got the diagnosis. “I was right!” Ugh, I used to love uttering that sentence…I never wanted to be more wrong about something in my life; I would have rather been right about a pregnancy scare with my college boyfriend. So began our life with type one diabetes and educating others on the signs and symptoms.
Following rules hasn’t paid off. We did everything right. We planned my pregnancy, I gave up alcohol throughout. I didn’t take medications outside of the occasional tylenol. I puked for 36 weeks when I was pregnant with my daughter, starting before my first missed period — I took zofran a few times, but all it did was help with nausea and give me constipation, I still vomited, so I chose to stop taking it. I exercised regularly, swimming and hiking up until my due date. I only gained 18 pounds the entire pregnancy. I ate as healthy as I could manage, and took my prenatal vitamin daily. I never developed gestational diabetes or had an increase in blood pressure. When my daughter was born she went straight on my breast. She breastfed exclusively, no other foods, for the first 6 months of life. Then we started offering solids, homemade babyfood, real foods, everything except for honey before age one .She never had a drop of formula or cow’s milk until she was 12 months old. She never developed any food aversions or allergies. Nothing sugary until the fabulous smash cake on her first birthday. She only drank milk and water, no juice. She got plenty of tummy time, exercise and sleep. She had all her vaccines on schedule and without reaction. She hit all of her developmental milestones on time, even with having a buckle fracture in her wrist at 10 months old while learning to walk. She had no screen time until her second birthday. No high fevers and no illnesses outside of the seasonal cold. We were fortunate enough that she never had to go to a daycare and was able to be with either my husband or I every day. My husband and I both wore her in wraps and soft structured carriers whenever possible. We cloth diapered as soon as we got home from the hospital. Our daughter was born in December 2013 and is still in a rear facing carseat, she hasn’t outgrown the limits of our seat and doesn’t know any differently.
Despite doing everything “right”, despite following all of the rules, on October 31, 2016, at 2 years 10 months old, our perfect daughter was diagnosed with Type 1 diabetes. We have zero family history on either side of Type 1 diabetes and very minimal history of autoimmune diseases in general. My toddler, you’re telling me my toddler has a chronic disease, requiring life sustaining medication (insulin), for which there is no known cure. Fucking fabulous…
Elisabeth Kubler Ross’ stages of grief started rapidly. Being a registered nurse (RN) I had read all about it in nursing school and seen it in action, but it is so much more intense when you’re living it. I also vacillate between the stages frequently. I hang out in the anger stage more than I would like to admit. I know that anger isn’t going to help us move forward with this disease, but sometimes it feels damn good to be bitter. Some days I still feel like I’m going to wake up and it’s all going to have been a bad dream.
We’re using our acceptance of the disease to take control of it and be our daughter’s pancreas to the best of our ability and maintain blood glucose values that are “in range” as often as possible. She started on an insulin pump 6 weeks after diagnosis and it’s going well. Not giving shots has made things seem a bit more “normal”. Now she’s a 3 year old who walks around wearing a kick ass pink polka dot fanny pack all of the time.
So for 2017, we’re throwing out the rules. We’re going to stay up late and have extra screen time, on occasion. We’re going to play with playdough in the house, go outside with wet hair, listen to music a little too loud and dance in our underwear (and a kick ass fanny pack). Because the reality is the universe laughs in the face of following all the rules.