The Diagnosis

First off, I don’t claim to be an expert on anything that you might find here. I’m not a doctor, or a nurse. If you need medical advice, please consult your doctor or health care provider. That being said, what I am is a mother to the most amazing boy ever, who also happens to be a Type 1 Diabetic and whose life changed forever one fateful February day almost 5 years ago. Those of you who are here because you know what Type 1 Diabetes is can skip some of this. For those of you who think Type 1 Diabetes is the same as Type 2 Diabetes or that you get Type 1 Diabetes because you eat too much sugar or don’t exercise enough, please read on and let me explain exactly what T1D (Type 1 Diabetes) is, or rather, is not.

T1D is not something you get from eating the wrong foods. It is not something you get from being lazy or being overweight. It is at this point, not curable although there is endless research being done by the JDRF and others to change this. What T1D is – is this. It is an autoimmune disease in which the body, for some unknown reason, turns on the pancreas, attacks it and kills the insulin producing beta cells. These beta cells are the cells responsible for producing insulin, which our body needs to make energy. Without insulin, the body turns on itself even more and begins to burn fat for energy, which can make you very sick. This is what happened to my son before he was diagnosed.

Almost five years ago, in February, our lives changed forever. Jake (that handsome devil you see in the picture above) hadn’t been feeling well. I can’t remember now if he had a cold or something that preceded his diagnosis. To be honest, that time has all run together into one big blur. I do remember him being tired a lot and complaining that his legs were hurting. He was drinking a lot, which in turn made him have to use the bathroom a lot. I didn’t think anything of it. He was a regular active and growing 8 year old boy at the time. It made sense that his legs were hurting because he was so active and because he was probably going through a growth spurt. Active 8 year old boys are bound to get thirsty and in turn drink a lot, right? Yes. They do, but that was the actually the first sign that something was wrong.

Every parent of a T1D kid has a story similar to the one I’m about to tell. They are all equally frightening and every time I hear or read a story such as ours, my heart breaks just a little bit. Over the span of a few weeks Jake kept feeling more and more tired. He didn’t seem like himself yet he wasn’t sick; he didn’t have a temp or any other physical signs that anything was wrong. He just kept getting more and more tired and one day woke up feeling really sick. It wasn’t until his Dad was cleaning the bathroom that day (Because what do parents do when they feel there is an impending battle of the germs? They disinfect everything in sight!) when we knew something was wrong.

I have a medical background. I knew the warning signs but they just didn’t click with me where Jake was concerned. It wasn’t until we cleaned the sticky urine from the toilet seat that I knew. My heart sank and we called his pediatrician who after listening to our story, told us to bring him in right away. Once there, they tested his blood sugar and it was extremely high. His pediatrician told us he thought it was Diabetes and that he was pretty sick. We were told to pack a bag for him and go straight to Children’s Hospital, to the Emergency Department, where they would be waiting to check us in and admit him.

My eyes are filled with tears as I type this. That feeling… knowing your baby is seriously ill, is a feeling too many parents feel at some point in their lives. You just don’t think it’s going to happen to you. But this time it did. After being admitted to Children’s and running a series of tests, they confirmed what we already knew. Jake had Type 1 Diabetes and was in diabetic ketoacidosis (DKA). They tell us we were one of the lucky ones. Some kids come into the hospital with much higher blood sugars (Jake’s was in the 400 range at the time) and in much more serious conditions. We weren’t admitted to the ICU but we did have a 3 day hospital stay of which the first 24 hours were the worst. They were trying to get Jake’s blood sugar back down and his PH levels balanced out and he wasn’t allowed to eat anything until that happened. I remember laying in bed and holding my baby boy as he cried and cried.. hungry and scared.

After the first day, they eventually got him stable and his condition improved enough so he could eat but that’s when everything in our lives changed forever. Because a simple meal, would never be the same again. Our lives would never be the same again.

I say “our” lives because as any parent, family member or loved one of a Type 1 Diabetic knows, T1D affects not only the person diagnosed but their immediate family as well. I got no sleep those first few months after he was released from the hospital. I was doing midnight and 3:00 am blood sugar checks to make sure his sugar didn’t drop too low, which could result in him slipping into a Diabetic coma. This is still something that I deal with five years later. I hardly ever get to sleep through the night as I am up twice to do blood sugar checks to make sure he is stable and not dropping too low or going too high.

Meal times forever changed after that day too. We learned what complex carbs are and how they are better for Type 1 Diabetics than straight old boring carbohydrates. Gone were the days of just sitting down to eat whatever we wanted when we wanted. Now we had to count carbs for every meal (that’s how Jake figures out his insulin dose for every meal) and do insulin shots before every meal. Even now Jake checks his sugar by poking his finger anywhere from 8-10 times per day! Going out to eat whether it’s at a restaurant or a family or friend’s house became different as well. We have to make sure we have his glucose monitor, test strips, needles and his insulin. You take these things for granted until you’re faced with something like T1D.

And it isn’t just mealtimes that changed for us. Every cold or sickness has the potential to make Jake very sick and the beginning of flu season every year makes me cringe because the flu can be especially dangerous for people with T1D. I struggle as I type this sentence… there was a young man, Will Hauver, who died recently from complications of T1D and the stomach flu. My heart goes out to his parents and family and I wish I could tell them that their son will always live on in those who read his story and learn from it. Awareness is a huge part of this battle.

Awareness and education are so important. I felt that needed repeating. Especially the education; for yourselves and for the general public too. I can’t tell you how many times people have given me “advice” when it comes to my son. People who question why I let my son have sweets, people who question whether he is really “sick” when I need to stay home with him on days when his blood sugar is unstable and he is having ketones. People who tell me I should be grateful because “at least it’s not cancer.” That last one really got me at the time. Thankfully no, it’s not cancer but you can’t even begin to compare the two diseases. You shouldn’t compare any diseases because the battles that each person faces with those diseases are vastly different and no two battles are ever the same. So no, it’s not cancer but T1D is a serious disease. It’s a disease that never gives you a day off. It’s a disease that requires constant monitoring because a low that’s too low can cause a diabetic coma or death and a high that’s too high can cause DKA and in severe cases, death. It’s a disease that constantly wages a war on your body. It’s a disease that is a constant balancing act whose long term affects can also be devastating if that balance goes too far one way or another. It’s a disease that affects everyone in a family, but especially the person diagnosed with it.

T1D is serious. I know that even now, sometimes my friends or co-workers don’t understand when I miss time from work when Jake is sick or suffering from complications because on the outside, Type 1 Diabetics look fine. Jake is outwardly healthy and aside from his T1D, is inwardly healthy as well. He does everything a non-T1D kid does and then some! Type 1 Diabetics look like you and I yet inside of their bodies rages a constant war, with plenty of truces mind you, but the battle and struggle with T1D is a daily one; a battle we all fight along side our loved ones. This is why I include families when I say that people with Type 1 Diabetes are among the bravest I know. Because we all know what it’s like. We know that this diagnosis affects everyone in a family and it takes a family, hell it even takes a village at times to stand up to T1D and to manage it and support those we love that have this disease.

So to those of you who are old pros at this and to those of you who are just beginning your journey, I just want to tell you that you are not alone. The JDRF has lots of support and support resources and we are all here too. So don’t be afraid to reach out. It does get better and life will settle back into a routine. It might not be the routine you had before, but your loved one is still here and T1D can be managed and you can live life normally. T1D does not have to define you. It might look like you, but it is not you.

And a special thanks to those who read this far or read this at all. Please feel free to leave any questions or comments or if you need someone to talk to, you can use the contact form to reach me. I am always here for you. Let’s fight this battle together.