November 26, 2019 was a day that turned my world upside down.
My son, my little 20lb 16 months (a day shy of 17 months) old son, was diagnosed with type 1 diabetes. My mama’s heart had known for a little while that something wasn’t quite right, but after 23 days in NICU, the fear of “something else happening” and spending more time at hospitals with doctors and monitors, made me weary to cross that bridge again. I thought after we left the NICU at Emory Midtown in July of 2018 that we would never be a part of “that group” again.
God had other plans though. So after a couple of weeks more and more people commenting on how much little man drinks and countless 12-2 am fits he would have wanted “Dink, Dink, Dink” (my sons word for drink), I called the doctor and talked to a nurse and we both just chalked it up to him being active. I mean he never sits down, so the thirst and lack of weight gain could easily have been just him never, ever, stopping. It didn’t make the feeling of something being wrong go away, but I just reasoned with God that surely nothing could be wrong again. He was perfectly normal and healthy, he just drank A LOT.
Well, God finally got through to me when my aunt and mom noticed the “sweet smell” on his breath. At that point, I knew I couldn’t deny it anymore and I called the doctor and was told to bring him in for a check-up that next day… 2 days before Thanksgiving. It was a long night, knowing I needed to stay off the internet and also not really knowing what the next 24 hours would hold.
My last straw of “everything being ok” came when the doctor walked in a said, “Well, the good news is he has gained half a pound (mind you, this would have been about 2 months since his last check-up and Dawson eats like a horse), so I really don’t think he has diabetes, but I am going to check just to be sure.” The look on the doctor’s face about 20 minutes later when he walked into the room, confirmed mine and everyone else’s fears, Dawson was a type 1 diabetic. The next sentence that came out of the doctor’s mouth was the one I wasn’t ready for, that was when he told us I needed to call my husband and we needed to get to Children’s Health Care of Atlanta as quickly as possible.
The part of my heart (and head) that will never leave the beeping monitors of Dawson’s monitor and incubator in NICU went into overdrive. I was terrified. My biggest fear since leaving the hospital had become a reality, we were going back to the hospital. The first question I asked was, “Can I stay with him?” The thought of having to leave him alone at a hospital again was too much to bear. It took the doctor reassuring me that I would not have to leave him and that even if Dawson ended up in PICU that I could stay with him, for me to actually breath again.
Once I knew I could stay with him, a sense of almost calm came over me (definitely a God thing) and I started writing lists and making phone calls. We had just dropped our puppy, Remy, off to be spayed that morning and my husband was still at work. Funny thing is- she is now his diabetic alert dog… but that’s another story. The planner in me went into overdrive because I knew I had to get things in order because I didn’t know how long we would be in the hospital.
Within the hour, the phone calls were made and we were on the way to Children’s Hospital at Scottish Rite in Atlanta. Little did we know the amount of information we would be given and the way our world would be turned upside down from this point forward.
Since God has brought this new normal and new journey in our life, I have decided to write about how we are managing having a type 1 diabetic toddler. I am going to highlight the highs and lows of this new journey, for a couple of reasons. First, for me to look back on, on both good and bad days, and remember our journey and a way to thank God for our progress. Second, I hope it will comfort another mama whose world gets turned upside down. I hope it will show them that it is scary, really scary, but it will be ok. And life will go on one blood sugar at a time.
Once Scottish Rite was called and we were on our way, all kinds of thoughts started coming into my head. The main one I was trying to focus on, and the one I was trying to get everyone else to focus on, was that we could be heading to CHOA for so.much.worse. In that moment, I had to be grateful that this was diabetes. Not that this is something to be taken lightly, because boy did I have no idea just how much this diagnose would bring, but at least with a lot of help and persistence and prayer, it was manageable. Dawson would be “ok.”
We were told by our doctor to go straight to the ER because he needed to get started on fluids immediately. When we finally got to CHOA, I just gave my keys to the nearest parking attendant at the valet service and asked where the ER was, not really knowing or caring where they were taking my car or even if I had given the keys to the right person. Walking into the ER and sitting in the ER waiting room after we checked in was terrifying. There were so many sick kids, and I was so afraid that Dawson was going to catch something just sitting in the ER waiting area. Little man was hungry and they wouldn’t let him eat anything until he was seen by a doctor. And I was still trying not to panic. Finally, after just a little bit, they got us back to a room because they needed to start fluids before admitting him and they were waiting in a room for us.
They checked his blood glucose again, which was about 695 at that point, and said they needed to put two IVs in, one in each hand. Well, getting a 16-month-old to let you do that was hard. Memories of the one he had in NICU came rushing back to me and I was just trying to hold it together, for him and for my husband and the rest of our family. I felt like if I fell apart, everyone else would too. Holding your child down while he is screaming is a really, really hard thing to do. Luckily they got them in, and he calmed down for a minute until he realized that he couldn’t suck his thumb because it was attached to the IV board. The beeping monitors from his heart rate rising because he was so upset took me back to NICU. It took me back to all those days I stared and stared at the monitors watching him sleep. It took me back to the constant beeping that I heard in my head for months and months after we left. Luckily our nurse saw me looking and after hearing out history, turned the beeping off and my focus went back to the issues at hand. Saying that the next little bit was stressful and heartbreaking would be an understatement. I knew they were doing things he needed, but seeing him so upset and so unsure of everything that was going on was extremely hard on my mama’s heart. Not to mention, the doctors had just confirmed that he did have type 1 diabetes and that life as we knew it had officially changed forever.
The one silver lining in all of this was that we. caught. it. We caught it before he got really sick and started having seizures. I thank God every day for all the people that put thoughts in my head that made me make the phone call to the doctor and be persistent that something just wasn’t right. It took a lot of signs for me to accept that something wasn’t normal, but I am just so grateful we didn’t find out about the “what ifs” that could have happened at any given moment if we hadn’t found out when we did.
After what seemed like an eternity in the ER room, which was actually just a couple hours, we were admitted to floor 4. Nurses came in and started talking about blood glucose numbers and long-acting and short-acting insulin. They were checking blood glucose levels and giving shots, and my mind was in a whirlwind. I started thinking about how in the world we were going to do this without them, without the nurses and doctors and educators to help me. I had no idea how I was ever going to be able to give my only son a shot, multiply times a day without breaking down each time. Not to mention, it was two days before Thanksgiving and I just wanted to be home, cooking and forgetting that this ever happened. I wanted things to go back to our normal, not the “new normal” everyone kept talking about. At this point, I didn’t even know how he was going to eat anything at Thanksgiving because how was I going to calculate the carbs (not sugars, I was learning) that was in each of the homemade foods.
That night, Dawson slept between my sister and me in a hospital bed. I didn’t sleep much because I was looking up carb free snacks, and how to do diabetes with a toddler. We had trips planned, we were going to Disney and California. How did you fly with needles and insulin and snacks? How was I going to take him that far away from his doctors? How was I going to do this and not panic? I knew I had to figure it out though because I had promised Dawson that night that his life would not change. Regardless of what I had to do, and learn, and figure out, I was going to give him everything possible to make his life the most normal I could. I wasn’t going to take trips and opportunities away from him. I was bound and determined to make this diagnosis adapt to our life not the other way around. I owed him that much. He was going to live with this the rest of his life, that was the least I could do.
Luckily, Dawson, my husband, and I have A LOT of support behind us. We had so many people in that hospital room with us listening and learning. So many of our family members, gave up their normal Thanksgiving routines to be at the hospital with us, in-class learning how to manage this disease to keep Dawson ok. We learned a lot the next two days at CHOA. We learned how to give shots and how to count carbs. We learned about sick days, and ketones and how to check blood glucose levels. Like the nurse told me, I felt like they opened a fire hydrant full of information and I was just trying to catch every drop I could before we left the hospital and I had to do this without the doctors. I wanted to be home by Thanksgiving. I wanted life to have some sort of normal.
Our amazing educator came on Thanksgiving morning to make my wish come true, we were released from the hospital about lunch on Thanksgiving day. The family that couldn’t come to the hospital for the class had worked really hard and cooked so that we could bring Dawson home to a Thanksgiving meal. But as we left the hospital and drove away, the new panic set it. How was I going to do this at home, for the rest of his life, without messing something up and sending us back to the hospital or worse?
If you have chosen to follow along, and read our story, thank you. Thank you for wanting to bring awareness to something that I didn’t really know that much about months ago. I knew people that had type 1 diabetes, but I had no idea what they went through on a day by day, blood sugar level by blood sugar level basis. Since Dawson was diagnosed, I have felt God saying to put our story out there, to be open and honest about what life with a now 2-year-old toddler with type 1 diabetes really looks like. It is not easy, I am not going to lie, but it is so worth it to see him living life and feeling good again.
If you are the mama who just found out, regardless of how old your child is, I know it is hard and you will manage. The fact that you are researching and finding out how others do it shows that you care and that you are trying to give your child the best life possible. If I can help one person or family, then being open about our life will be so worth it.
On the drive home from the hospital, after I figured out where my car was and after the valet attendant brought my husband the wrong car the first time, I began to realize that our “new” normal had officially begun. It was Thanksgiving Day and we had so much to be grateful for. I was thankful we were leaving and not spending Thanksgiving in a hospital bed. I was thankful Dawson was feeling better now that his blood glucose levels had come down from the 695 from when we were admitted. I was even grateful for diabetes because as I looked around at all the other families and children there, I realized that some of them wouldn’t be going home for Thanksgiving and some would be spending a lot more time than we did staring at hospital walls.
My heart ached for all the mamas and families and children we left behind that day at Children’s of Atlanta. When you’re a mom of a child that has been diagnosed with something, regardless of what it is, you join a club that no one wants to join. And even though we had a victory in getting to leave the hospital, a lot of other families didn’t have that win and my heart goes out to them. The kids at Children’s are so sweet, it touched my heart when my stepdad told me that some older kids were playing basketball and Dawson just kept saying ball, so they rolled it over to him and included him. No kid deserves what these kids have been dealt but they take it on with such strength and grace, it truly amazes me. We should all be more like kids sometimes.
Even though I had a flood of different emotions as we pulled out of the parking deck, I knew I needed to pull it together. Dawson needed lunch and I had carbs to count and insulin to dose. I had learned a lot over the past 2 days at CHOA. I had learned how to give a shot, how to count carbs, how to guess at how much Dawson ate, how to check numbers, but all of that information was just that, information. I had to do this, every day and make sure he was ok.
I learned really quickly, that my pre-diagnose definition of “ok” and my post-diagnose definition were two different things. I am a very type 1, OCD, kind of person. So in my world, you follow the rules, you calculate carbs meticulously, and you triple check your insulin calculations and that means Dawson will stay between 100 and 180, the ideal blood glucose level range. Just typing this now, it makes me laugh because, in reality, that is exactly NOT what happens.
I remember a day that Dawson had some pretty bad lows, 40s at morning nap times and 60s in the mid-afternoon, and I just kept thinking what did I do wrong. I had to have done something wrong, he shouldn’t be this low. I finally called another mom that had a child diagnosed young because I needed someone to tell me “the fix.” I needed her to tell me a+b=c and that this is what I did wrong, and this is what I should do next time. However, that is not what she said. Instead, she told me that she asked the doctor the exact same thing 4 years into her son being diagnosed. The reality is there is no correct formula for diabetes. We are people (doctors and parents) trying to take the place of an organ in the body that’s not working. Being human means we make mistakes and that our decisions are not going to work all the time. We aren’t going to be able to guess what the body is doing or exactly what the body needs every minute of every day when so many different things can cause different blood glucose numbers.
So almost 1 year into this, I can honestly say, I have learned that you take life one blood sugar reading at a time, and that is our “new” normal. I still meticulously count carbs and triple check my insulin calculations, but then I say, ok but right this moment I think the best decision is “X”. And let me tell you, “X” changes every hour of every day. What works one day, may or may not work the next. I have lost track of the number of times his carb ratios have changed for different meals and how many times his correction factor has changed. I am learning that our “new normal” is rolling with every loss or victory. Some days are really good and some days are really not so great. I am learning to trust God every day and trust that he will give me some mama intuition that tells me exactly what Dawson needs at that moment.
Our “new” normal is that there is no normal. No two days, just like no two blood glucose readings are the same. I am learning to be ok with that, but don’t let me fool you, some days I am really. not. ok with that but I quickly remember that I am not the one living with this, Dawson is and if he can smile then I can smile and give him the best life I can give him. I can pull it together because he needs me.
If you are still following along, thank you again. Our life is never short of crazy and I am learning to be truly open about life with a T1 toddler. For the families out there searching for a formula, the “perfect formula” for T1 diabetes, let me know if you find it. Until then, keep your head up, you are making the best decision you can for your child with all the ability your know-how, and sometimes even in a loss, you have to let know yourself you did everything you could be enough. (Maybe I should listen to my own advice sometimes…) I have learned in the past almost year that the T1 community is strong, and there are people out there willing to talk you through a bad day and lend a hand however they can help. Reach out to them, I promise they are there. I hope we all come together to bring awareness to this disease and to hopefully one day find a cure.
Until then, we will be taking on our “new” normal of no normal, one blood sugar level at a time.
Just a mama to a Type 1 Diabetic two-year-old little boy trying to take life one blood sugar at a time. I love to share his (and our) story through blog posts and Instagram because I want to spread as much awareness as possible to this disease in hopes that one day, someone finds a cure.