September 18th, 2020.
The day our lives completely changed forever with 5 little words.
“She has type one diabetes.”
I still replay that moment in my head, way too many times than I’d like to admit. This is not about me though, this is about my brave girl that continues to amaze me every single day; with every finger prick, needle injection, sensor change, with the late night wake ups, the beeping of the highs and lows, the “hold on you need insulin before that”, the carb counting, the measuring, the weighing - something a “normal” kid shouldn’t have to worry about.
Although this is going to be about Jersey’s diagnosis - I’m also hoping this brings awareness to this disease. We were lucky on how early we caught it with Jersey, a lot of other people are not so lucky.
I remember a month or so leading up to her diagnosis we noticed that she was becoming alarmingly thirsty. She was filling up her cup /water bottle every 30 or so mins. At the time though, I chalked it up to it being a hot summer and her staying hydrated. Family that hadn’t seen her in awhile also started making comments saying it looked like she was losing weight. Looking back at photos now, you can totally see it. At the time, I just thought she was losing her baby weight, growing taller and getting into puberty.
Type 1 diabetes runs on my dad’s side of the family with my uncle having had it(he passed away 10 years ago) My dad knew the signs and was one of the ones pressing the issue on her symptoms. I didn’t want to believe it but finally one day after yet again hearing his concerns, I grabbed a blood sugar reader we had at home from my step dad, and read her sugars.
It read 23.
Normal blood sugars are between 4-7.
I was still in disbelief at this moment as she had just eaten a fruit roll up so of course her sugars were going
to be high, right?! (I also didn’t know a thing about how our natural insulin worked in the body) I was able to get her immediately in with a walk in doctor, he did some blood work and sent us home.
Within 30 mins I received a phone call back from him saying her blood sugars were at 30 and we needed to get to the hospital with her now. I remember that drive to the hospital so clearly. We were only a 10-15 min drive away from there, but it felt like we were driving to a different city. I was trying to keep it together as best as I could so she didn’t see me come undone on the drive as my mind was racing.
The mom guilt I had. I can’t even explain. I could not believe for the last month or so I was ignoring symptoms that I passed off as “normal”. That’s the thing with type 1 diabetes though, a majority of the symptoms (there are more than the 2 I listed and I’ll get to that later) are passed off as normal. More times than not, most parents don’t find out their child has type 1 until they end up in DKA (diabetic ketoacidosis) Which can end with them in a diabetic coma, or death.
As soon as we arrived to the children’s emergency, they were already waiting for us. They took her blood sugar again, and we were sitting at 45. I remember seeing that number and the look on the nurse's face and once again, trying to keep it together as I could already see the terrified look on Jersey’s face. It was covid rules at the time so we were only allowed one parent during this emergency room process and I remember being so scared by myself without my support system, but Jersey … She was 8, almost 9 years old at the time so she was fully aware of what was happening around her. I needed to keep it together for her.
We were admitted immediately.
I won’t lie when I say those next few days were an absolute blur. When someone is diagnosed with type 1 diabetes, they need to work with an Endocrinologist to learn about the disease itself, as well as a Dietician to relearn all about the food groups.
One misconception (and there are SO many, especially confusing type 1 with type 2 diabetes) with type 1 diabetes is that they can’t have sugar anymore. I even had that thought as well until we were taught everything. We actually don’t even look at the sugar contents in food- we look at carbs. Jersey can eat whatever she wants (in normal moderation), we just have to dose her with insulin for it. So we spent the next few days learning how to dose insulin vs what she wanted to eat.
I remember crying at night, being so overwhelmed, wondering how we were going to be able to do this for her. How was I going to be able to learn and remember all this stuff? Fries can be 1 carb each, bread can be 15, buns can be 25, apples can be over 20 so we must weigh. 84 grams of raspberries is 20 carbs and the list literally goes on and on. I feel so proud knowing I’ve come so far since that moment and just listed those all at the top of my head. It’s crazy what we can adjust our minds and bodies to accommodate for our kids. I was never good at math in school and it was my worst subject, but now I’m getting pretty good at doing the addition and conversions in my head.
Jersey is on 2 types on insulin. She takes 1 shot at bedtime which lasts her 24 hours if she was not to eat anything in that next 24 hours. It keeps her sugars at normal levels like our pancreas does through out the day. This is her long acting insulin. She takes another type of shot before every meal. This is to cover anything she is to eat that contains carbs and is her short acting insulin. It lasts approximately 2-4 hours.
If she ends up having high blood sugars at all during the 24 hours though, she needs extra fast acting insulin to bring that down. So at minimum, she takes 5 shots a day.
Before every meal (including before activity) we must know what her blood sugars are to know how to properly dose her for insulin. We did that by finger pokes for the first few months but luckily, technology has come so far these days that now she has a CGM (Continuous Glucose Monitoring System). This has a tiny needle imbedded in it that we apply once, every 2 weeks. So essentially she gets 1 poke every 2 weeks vs the 5+ finger pokes she would do daily. Should she be “high” before she eats, she needs extra insulin on top of what she needs for the carbs she’s about to consume.
It’s a fun little brain teaser EVERY. SINGLE. TIME. SHE. EATS.
Imagine being 8 years old, going to bed one night being able to make your own lunch if you were hungry and mom & dad were busy, too waking up the next day & that independence gone. We were now having to be back at her side for every meal, this time though even more intense; weighing, measuring and making sure it’s the perfect amount for the dose of insulin. One wrong calculation and that can literally mean life or death for her. If we give her too much insulin, this can bring her blood sugars down too low. Low blood sugars can cause seizures and death.
On top of meals that we have to dose for we also have to watch her activity. Every 15-30 mins of activity can bring blood sugar levels down, so we need to give her extra carbs. She’s in hockey, so this means checking her sugars throughout her practices & games. However, get this; excitement can also raise blood sugars… so we find she can run low and needs extra carbs during practices, but is fine or sometimes will run high during games.
High blood sugars are not as scary as low in the sense they won’t cause a seizure or death, asap. However high blood sugars over a long period of time do damage to the organs in our body. Constant high blood sugars can also lead to DKA which is what I explained back when Jersey was diagnosed, so we really try our hardest at keeping her at that happy level of 4-7.
On top of the daily needles and making sure she is in range, we also need to make sure she is in range throughout the night. I have a bit of trauma from some nights where she has gone extremely low and we almost caught it too late. Our CGM is supposed to alert us if she is heading low but the few times it was almost missed, was times the alarm didn’t go off and we checked ourselves. We can’t always rely on technology so we rely on ourselves checking her every night. Which in turn sucks for her for when she wants to have sleepovers with friends. I don’t want to rely or have to “burden” those parents with having to check her in the middle of the night. If she is low, we have to wake her up for a snack.
It’s all pretty overwhelming as I go through all of these emotions again, and our daily diabetes tasks. We can no longer leave the house anymore without our medical pack. We can no longer just have a meal without thinking about numbers and insulin. Everyday I'm in contact with an EA at her school so she knows what to give for insulin at lunch or how many skittles to give because we are dealing with a low, etc. Our lives truly changed in the blink of an eye.
However, if I was to give any Mama advice that is going through this at the beginning of a diagnosis is that it does get easier. This does become second nature , and you will get through this. Our kids are so resilient and I can’t even begin to describe again how proud I am of our daughter for taking on this diagnosis as best as she could.
I worry about the future, the teenage years, even her adult years and her having to take on this burden for the rest of her life. I so hope that one day there is a cure for this.
I wanted this to be a bit about awareness so let’s discuss type 1 diabetes and what it is.
Basically, in short it is an autoimmune disease and it is here in Jersey, for life. There is no cure and no way to reverse type 1 diabetes whereas type 2, it can be reversed with health changes. I remember the first few weeks of diagnosis I received so many tips and advice on type 2 diabetes and it was overwhelming. The two are kind of the same , but essentially so different. The advice for type 2 did no good for us. Especially those telling us “oh just change her diet and she won’t need insulin.” Unfortunately, that is not the case.
Most people think type 1 diabetes is caused by eating too much sugar but it has nothing to do with that. Something happened in Jerseys body (usually a flu / sickness can trigger it) where her immune system was tricked and started attacking her insulin- making beta cells. Now, her pancreas creates no insulin anymore so she must do daily injections to keep her blood sugars within normal range, for the rest of her life. There is no reversing this type of diabetes without a cure.
What are the symptoms of type 1 diabetes ?
- frequent ruination
- blurry vision
- weight loss
- fruity breath
The most noticeable ones now that I look back on Jersey’s symptoms is the thirst, frequent urination, and weight loss.
Ever since I started posting about Jersey’s story on social media, I’ve had a few moms reach out to me concerned about their child showing symptoms that they learned about through my posts, which ended up leading to a diagnosis. All I can say to you is this; your instincts know best. If you have a slight feeling, please ensure your child is checked. We were lucky in the sense we caught Jersey’s so early. The doctor figured she only had it for a max of 3-4 months before we caught it. Most families it’s 6-8 months and then something terrible happens to discover it.
Today, Jersey is thriving. Every day is different and we’re still hoping for that cure. There are days she has accepted her diabetes but there are also days she wishes she was a “normal” kid. I wish I could grant that wish for her. For now, we keep doing as much as we can, for her diabetes care to lessen the “burden” for her until she is older and has to do it herself.