We are warriors. It is really a new idea to call myself a warrior to help myself stay positive in this crazy world we live in now. I am not a Type 1 diabetic, but my roots in this disease are deep. As of July, there are now 4 members of my family who have this demanding disease. I realized early on that Type 1 diabetes is a family disease, but not for the genetic reasons as many may assume. It is why I, my husband, and two kids are warriors.
My son was diagnosed at the age of 2 in 2015. I’m a rather anxious individual to begin with, so early on in my son’s infancy, I researched a handful of diseases I knew ran in my family. This included Type 1 diabetes and I am forever thankful I did have that knowledge beforehand considering the alternative outcome some families have to endure.
It was an excruciating hot August in my region and my son could not stop drinking water. I’m talking a full sippy cup every 40 minutes. That could have been easily dismissed. The excessive urination, on the other hand, was something else. He woke up one morning drenched in pee. This wasn’t entirely unusual; he was still using diapers and occasionally the brand we used didn’t do a spectacular job. It wasn’t until I changed him that red flags were flying. Diapers don’t usually drip but there was a puddle coming from the diaper on my living room floor. It clicked something was wrong. The symptoms checked out from WebMD and I was immediately on the phone with his pediatrician. Initially, the nurse believed a test for Type 1 could wait a week until his normal pediatrician came back from vacation. This was the first, and unfortunately not the last time, I advocated for my son and his health. I told her I really thought he just needed a quick test and there had to be another way to see a doctor, even if it was the one on call. She asked the doctor if he would need to be seen. Again, I am so thankful I pushed for him to be seen because sure enough, he had Type 1.
My husband and I were thrust into the world of Type 1 head-first. I felt like I was drowning. My fight or flight was activated, and it debilitated me. I had to take a medical leave to be able to take care of myself and ultimately take care of him as a result. I had panic attacks daily, sometimes out of nowhere, and at the most inconvenient times such as before interviewing for a new job. Eventually, my mental health got better, but the presence of isolation remained. It wasn’t until I stumbled across a Facebook group geared towards moms of people with diabetics. A simple survey of location by one of the moderators led to a solution to the isolation. There were other moms who had children going through the same thing we were, just a town away from me. I call it an “instabond” whenever I meet another mom of a diabetic. The struggles with their diabetic technologies, the venting about the struggles of high and low blood sugars, ensuring our kids had normalcy in a world where they felt abnormal. Finding them made me feel less alone. In fact, the moms in my area banded together to make our own Facebook group geared towards creating a network of parents of Type 1 diabetics in our local vicinity. Having that support has improved my mental health greatly over the last four years! I’ve found one of my best friends out of this group. In fact, she was the second person I called when my life got turned upside down for the second time.
The Worst Time for a Diagnosis
My daughter was just diagnosed in July of this year. As if 2020 wasn’t difficult enough, right? She was wetting the bed for a week straight. It was very unusual for that to happen since she was fully potty trained. The seed was in my head that she could have diabetes but I didn’t act on it right away. I felt as though I was paranoid, but I didn’t fully dismiss it. That was until she asked to check her blood sugar. That’s right, my daughter helped diagnose herself. I had given her periodic checks but this one was different. She was three times the normal blood sugar, the same blood sugar her brother was diagnosed with 5 years earlier. I immediately called my husband in a panic. He had his first panic attack as he called his boss to let them know he needed to leave mid-shift. I called the nurse for the pediatrician and luckily, this nurse was much more responsive and caring to my panic. The on-call pediatrician was also receptive to this and had us go to ER. I packed her for an anticipated three day stay as we did before, not knowing if my hunch was real. Sure enough, she was diagnosed with Type 1 at the age of 5. We were lucky: her A1c came back much lower than her brother’s was at diagnosis as a result of a simple finger poke and awareness.
Let me talk about getting a life-altering diagnosis in the middle of a pandemic for a moment: it was nothing short of strange. I was the only one allowed to be with her and if I were to leave for any time, she would be left alone. The attending physician came into the ER room with full biohazard PPE. We wore our masks when staff entered the room. It was bizarre and frankly scary for myself, as this was the sign of the times of COVID-19. I can’t imagine how my daughter must have felt. The initial thought I have is it was probably traumatic to not only be diagnosed with an incurable disease with endless shots but to also be hospitalized in a time when a spaceman walks into the room instead of a suit-and-tie doctor she was used to seeing.
But everything happens for a reason. I have learned to live in that sentiment. I was made to be their mom and I have enough strength to handle this disease, even in times when I feel like I’m drowning. I struggled with the thought of having to drop out of my Masters of Counseling program once she was diagnosed. The overwhelming thought of needing childcare for two Type 1’s would be difficult to find along with the stress that comes with grad school. With that being said, her endocrinologist (a different physician who sees my son), mentioned in the hospital the need for mental health services for these kids within the endocrinology clinic. She mentioned it wasn’t until that very week they were able to roll out depression screenings for adolescents and there were three referrals already for outside counseling.
This conversation was meant to happen as this has been my ultimate goal of being a counselor. Where I am located, the state is rated highest when it comes to the need for mental health practitioners. There are gaps all across my state that need to be filled, including specialized mental health services for kids and families just like mine. It was something I have advocated for this past year in my networking with the hospital’s higher-ups.
I have renewed vigor and drive, but it won’t be easy by any means. It’s three weeks into the first year of my program and it’s been a struggle to juggle schoolwork, on top of homeschooling the kids due to COVID-19, managing their care, and ultimately meeting their needs as children. I live by child first, diabetes second. What I’d like to add is mental health as third. Us as parents cannot provide the care our kids deserve and in turn, our kids will not be able to help themselves if or when their mental health diminishes. Individuals with Type 1 have an increased risk for depression and anxiety, as well as having a higher risk factor for cognitive delays and Alzheimer’s disease with persistently elevated blood sugar. I have three years to start networking, advocating, and creating from the ground up a program designed to help us. Realistically, it might be 10 years before this system is created and implemented. That is why DMP is important, to know we as parents have similar experiences with this disease.
The take-away from one mom of diabetics to another: we are resilient creatures. We are the ones who take on immense responsibility and join a club we never asked to be a part of. This club is exclusive and can feel isolating, but we are not by any means alone. We need to have the opportunity to make connections with others to help protect our mental health and to improve our ability to be better caregivers to our kids.
Momma, find some sort of self-care that fits you. Whether you can escape for a bath or singing at the top of your lungs in the car, do it for you. Make those socially distant connections, whether locally or within DMP. Keep tabs on your sweet baby angel to see if they are struggling. If you are struggling with diabetes burnout, depression, or anxiety, reach out to professionals. Your experiences as a full-time caregiver are valid and real. I see your struggle when it feels like no one else acknowledges it. You have an insta-bond with me already.
I’m a mom to two Type 1 diabetics and a mental health advocate. I’m currently in progress in receiving my Master’s of Counseling with the hope of providing mental health services to diabetics and their families.