“Benning Lynn Richie was born September 1, 2016, at a whopping 8 pounds, 13 ounces, and 21 inches long. She was a beautiful brown-eyed chunk of love. I enjoyed 3 months of maternity leave with her and then off to daycare she went. I was blessed to breastfeed her for 7 months before transitioning to formula. Benning was off the charts in terms of her milestones, easily 95th percentile for height, weight, and head circumference. She passed her eye exams and hearing test. She was a textbook baby. Not long after attending daycare she did suffer chronic ear infections that eventually led to her needing tubes. That was our second experience with a hospital since birth. Little did we know, it wasn’t going to be our last.
As she entered her toddler years, she was a spitfire with a large vocabulary. So full of personality and naturally the center of attention everywhere she went. We always knew she was going to be a difference-maker from an early age. She was unapologetically confident and goofy. She was special and not just because she was ours. You could often find her singing the Little Mermaid soundtrack during independent work or play. During her early preschool years, she was advanced for her age. As she moved up in classes, she began to potty train and learn independence. She struggled like a lot of kids with using the restroom. She had accidents but nothing out of the norm for a potty-training toddler.
Between her second and third birthday, we became pregnant with her baby sister, Demi. Benning couldn’t wait to be a big sister. After Demi’s birth, Benning spent more time at home with me while I was on maternity leave. We were so thankful she had mastered the art of potty training before Demi was born so we didn’t have to navigate that in addition to a newborn. When Demi was 6 months old, Benning started to demonstrate regressive behavior. She was having the occasional accident during the night and sporadic accidents during the day. Her dad, Sal, and I chalked it up to a few different things. We thought she was just adjusting to the shift in attention now she had a baby sister. Or she saw Demi’s diaper being changed and wanted us to wipe her butt too. Or maybe we rushed potty training and she just wasn’t ready. As the days and weeks went by, the behavior didn’t change.
We made sure she went to the bathroom right before bed to eliminate any accidents. They continued. We then made sure we cut off drinking water a couple of hours before bed. The accidents continued. You can imagine our frustration waking up in the middle of the night to her saying, ‘Mom, I’m so sorry, I couldn’t help it.’ Meanwhile, the bed was soaked, she was soaked, and we were soaked. 3 a.m. showers for everyone and back to bed we went. Eventually, Sal and I were so frustrated and tired of being peed on, we made her a pallet on the floor. It was hard to force her to sleep beside me because she wanted to snuggle. I would rub her back and hang my arm over the side of the bed so we could hold hands.
Our bond is naturally strong. Not only did the accidents continue but her desire for water increased. She would want to chug water before bed, which we wouldn’t allow because we thought that was why she was having accidents. In the middle of the night, she would wake up so thirsty begging for water. ‘No, Benning, go back to bed. I’m not cleaning up another mess.’ It got to the point she would cry for water, be hungry, and the accidents would continue.
After about a month of this, I noticed she was losing weight. I would bathe her and see her backbone. I googled her symptoms — extreme thirst and accidents. The results showed Diabetes and constipation. I thought, ‘There’s no way she’s diabetic, she is 3. She doesn’t like to poop so she’s probably constipated.’ After another night of hunger, thirst, and accidents, I decided to make a PCP appointment with her doctor at Cook Children’s.
Her pediatrician was pretty confident she was constipated and had already written a script for relief. Before we left, he wanted to check her urine sample. I remember him coming back into the room, I was sitting there with Benning, Demi was home with her Sal and the doctor said, ‘Unfortunately, I was wrong. Her glucose levels are in the 500’s and we need you to go to Urgent Care right now.’ I remember thinking, ‘What? Glucose levels? She just needs to poop.’ Time stood still as I tried to comprehend his body language, the things he just said, managing my reaction because Benning was watching and figured out what I was going to do. He looked at me and said, ‘I’m so sorry.’ The tears poured over my face mask as I nodded my head.
I wanted to bawl. ‘Keep your cool,’ I told myself. I didn’t want Benning to panic but I was freaking out. I said, ‘What does that mean? Her glucose levels are high? What is a normal number?’ Apparently, the normal glucose range is in the hundreds. At that moment, I knew something was wrong. He said, ‘I’m pretty sure she has Type 1.’ I thought, ‘No way, she’s healthy, she isn’t overweight, she has a normal kid diet, she was a healthy baby, passed all her milestones. No.’ He handed me the directions to the hospital and said they would be expecting me.
We got in the car, I buckled her in, and then I called Sal before I got in the passenger seat. I explained what the doctor told me and cried, ‘I knew something was wrong, I knew it. Why would any child purposely wet the bed multiple times a week just for attention? She was a good kid. We missed all the signs.’ Benning, of course, asked questions and I said, ‘We just need to go get some more tests to make sure everything is okay.’ Due to COVID, only one adult could be with her in the hospital.
The nurses asked me a million questions and started hooking her up to all these machines. She was scared. I was scared. They needed to take blood to confirm the glucose from the urine was accurate. And so, the needles began. The results came back, and the number was just as high. The doctor came in and confirmed it was Type 1 Diabetes. They wanted to run some more tests to make sure her other organs weren’t impacted. At that moment, I remember thinking, ‘What if I overlooked all of the signs and this has caused permanent damage? I’m her mother. I should have seen the signs. That’s my job, to take care of her.’ Fortunately, there was no organ damage, and they were confident we caught it early.
After a couple of hours, we were moved to the ICU. They wanted to make sure she received extra, timely attention until her numbers stabilized. Walking beside her as she was rolled into the ICU room, passing babies and kids on breathing tubes and other lifesaving machines was a real wake-up call. I was alone, in shock and watching my daughter be hooked up to more machines, poked and prodded, screaming because she was scared and in pain. But she was the healthiest kid on the ICU floor. We didn’t belong there. And we didn’t stay there long but those other kids, they were really sick. At that moment, I was grieving but I knew no matter how hard this was going to be, it could ALWAYS be worse.
Before bedtime, we were moved into our permanent room. Our PCP appointment turned into an urgent care visit and then quickly a 3-day hospital stay. I was EXHAUSTED. My life had just been flipped upside down. Sal was able to bring me my belongings for my stay and visit with Benning. I was still nursing Demi, so I had to use my pump for the first time. I forgot to tell him to bring a cooler, so I had to store my milk in a bucket of ice the nurses so kindly provided for me. What an experience, pumping in the ICU.
The next 3 days consisted of a lot of screaming, crying, shots, finger pricks, and education. Trying to learn how to keep our daughter alive when we leave the hospital in 3 days, while also processing what’s happening, and watching her be tortured was A LOT. I say tortured because that’s what it looked like. To prick her finger, she would need to be held down by three nurses. To give her insulin, same. ‘How in the heck am I going to manage this by myself if it takes three of you?’ I just couldn’t comprehend it. Not to mention the hours of education with the Nutritionist, Diabetes team, and an Endocrinologist. Learning what foods are considered low and high carb. How to calculate her insulin to carb ratios. How to prick a finger and read her glucose. How to give an insulin shot to an orange. What to do if her sugar falls too low or goes too high. What to do if she’s unresponsive. NEWS FLASH! I’m not a nurse, I didn’t go to medical school, I hate needles, I can’t do this. At one point I had to go into the hall and sob. This was too much. I have a baby, I’m postpartum, and this is just too much.
Everyone assured me there was nothing we could have done differently. It wasn’t our fault. Her pancreas was just failing, and she would be insulin-dependent the rest of her life. She could live a completely normal life but with medicine. The Child Life Specialists at Cook’s were my saving grace. When it was time for a prick or shot, they would help distract Benning and comfort her. It was a battle, every time. It was heartbreaking. They were a bright light during those blurred moments when I was in survival mode. They would do sand art, make slime, color, and paint.
The nurses also showed Benning their ‘secret’ fridge full of sugar-free snacks. To this day, Benning talks about the private stash they so willingly snuck her away to find. It was a relief to know a lot of the staff caring for her also had Type 1. I can’t begin to tell you how that helped my optimism. Knowing some of them were diagnosed as teenagers and thriving in life made me realize she will live a full life, and this isn’t a death sentence. They showed me their Dexcom’s and pumps, which made it real but also manageable.
After 3 days, we were given a crash course in being a caregiver to a child with Type 1 Diabetes and wished the best of luck. I remember thinking, ‘Her life is completely dependent on our ability to get it right every day.’ The first week home was scary. We had to wake her up in the middle of the night to prick her finger and make sure her sugar wasn’t dangerously low. We would prick her finger before each meal, give her an insulin shot after every meal or snack in addition to night-time insulin.
Luckily, we were given a Dexcom G6 a week after we were released. This little device gave me my sanity back. It eliminated the pricks and gave us 24-hour surveillance on her sugar. However, the application of this nifty sanity saver was painful at first. A large needle inserts this sensor under Benning’s skin so it can send a Bluetooth signal to my phone. It also needed to be changed every 10 days. We were blessed with Type 1 friends who came over to our house for the first application. They saved me in the beginning and they still save me in my moments of doubt.
We are 6 months into this life-long journey. We change Benning’s Dexcom G6 every 10 days, she gets insulin shots every time she eats carbs, or her insulin is too high, and she gets a different shot before bed. The cries are minimal. We do it together and we find our groove. At times, she will reflect and say things like, ‘I don’t want to have Diabetes, I just want to be normal again. Why do I have to do this all the time?’ One of the latest comments took my breath away, ‘Mom, I won’t have Diabetes forever.’ I said, ‘I sure hope not, baby.’ She said, ‘No, because of heaven.’
She is now 4 and understands this is just one thing that describes how amazing she is. It doesn’t define her. She also understands, in heaven, everyone is healed. She proudly tells her peers about her Dexcom and her Diabetes. She makes sure she doesn’t share her carbs and knows she can’t eat other people’s snacks without telling me. She played her first soccer season shortly after her diagnosis and continues to live life like every other kid. On most days, she wears it as a badge of honor.
The saying, ‘You don’t know how strong you are until you have no choice’ rings true. I’ve overcome my fear of needles and Benning is the same goofy, confident, outgoing kid. Do certain things look a little different for our family? Yes. When we go out to eat, Benning chooses her meal, we count carbs, she gets a shot in the booth and then we enjoy our meal. When we’re at a birthday party, the cake and snacks count. If she is playing a sport, we account for her sugar levels before, during, and after the game. In the middle of the night, if her sugar drops, we wake her up to drink or have a snack. There is no rest. There is no quick grab-and-go food, no endless Halloween candy. Everything requires something, whether that’s medicine or supervision. The good news: nothing is off-limits, it’s just modified.
When I was in the hospital, I never thought I’d make it. Now, it’s second nature. I don’t know everything and I’m not perfect. But you fight for your kids. I’ve given more shots than I can even count. I’ve held Benning and cried with her more than a mother should. At the end of the day, what I do know is she’s going to do everything she wants to do in life. I’ll make sure of it. There is no test without testimony. She is going to change lives with her tenacity and perseverance.
For all the mommas out there, always trust your instincts and listen to your kids. Don’t discount their feelings or emotions. Yes, they may be little, dramatic, attention seekers or they may have a legitimate problem. I wish I wouldn’t have waited an extra month. Hindsight is always 20/20. We feel horrible for losing our patience and at times disciplining Benning. She was thirsty because her sugar was so high, and her kidneys were working overtime. When she was having accidents, it was because her body couldn’t process the sugar. I’ve since learned all of Benning’s symptoms were classic warning signs. But we don’t know what we don’t know. It wasn’t her fault. It wasn’t our fault. And we’re all going to be okay.”
This story was submitted to Love What Matters by Brogan Richie. You can follow their journey on Instagram and Facebook. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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