I contemplated on whether I wanted to write this blog post. As a very vulnerable person, it doesn’t take much for me to get personal- but this is different. I knew that writing this would mean I would have to relive a moment that was life-changing, and in many ways, traumatic. However, the stories and testimonies in blog post and podcast from other parents who’ve experienced what I did gave me so much perspective, faith, hope, and guidance during this journey. I know it is my purpose to be of service to others, as well as to help and inspire. This blog post is for you if you need it!
(I was given permission from my daughter to write about this)
June. 26th, 2021 changed everything.
On June. 26th, 2021, my 9-year-old daughter was diagnosed with Type 1 Diabetes. Prior to her diagnosis, I knew nothing about Type 1 diabetes. It’s the type of diabetes that’s not talked about enough. Most people are only aware of Type 2 diabetes, therefore, most diagnoses aren’t made until the person is severely sick and hospitalized-which is exactly what happened to my daughter.
I think it’s important to share context of what Type 1 diabetes is, to bring awareness about this autoimmune disease with hopes that it’ll save, help, or educate someone.
Type 1 diabetes is known as juvenile diabetes and is often diagnosed in children and young adults. A person becomes Type 1 diabetic when their own immune system mistakes their beta cells for danger- and destroys them. Beta cells are cells produced by our pancreas and is responsible for releasing a hormone called insulin. Our beta cells are very important because it helps to release insulin which keeps our blood sugar levels within normal and healthy range all day, every day. The reason you and I can have a donut and not worry about our sugar levels spiking is because our beta cells automatically releases insulin to allow the glucose to enter the body cells, which is then used for energy. Additionally, the release of insulin is responsible for managing the amount of glucose that enters our bloodstream at any given time. The difference between Type 1 diabetes and Type 2 diabetes is that Type 1 diabetics are typically insulin dependent because their pancreas is no longer producing insulin, whereas a Type 2 diabetic pancreas may still be producing insulin but not as well as it should. Most Type 2 diabetics can incorporate a healthy lifestyle to improve the functionality of their pancreas and production of insulin.
Without knowing or having any of this knowledge prior to my daughter’s diagnosis, I immediately began blaming myself despite always feeling like I did everything to keep her healthy. My daughter is tall and thin, and eats mostly a vegetarian diet- so how could this happen? Then I learned that Type 1 diabetes is unpreventable. There’s no way to “avoid it” and isn’t at the fault of anyone. It is said to be a result of hereditary or environmental factors. However, despite these facts, it took me a while to not think of all the things I could have maybe done differently to prevent this. I know most Type 1 parents may have initially felt this too.
Now that we know the difference between Type 1 and Type 2 diabetes. Let’s get into the symptoms.
A few months prior to her diagnosis, the most apparent symptom was her excessive bathroom usage. We could no longer go further than 5 minutes from our home before she needed to use the restroom. Most days it was to the point that she was maybe going to the bathroom 10 times in an hour span. With this being the only symptom, it didn’t appear as an emergency at the time, but I still decided to play it safe and take her to the doctor. At the time, her doctor couldn’t find any reasons to be concerned and so after the doctor checkup we went back home as normal and suspected maybe she just had a hyperactive bladder.
Three to four months later, Phoenix started to lose weight…A SIGNIFICANT AMOUNT OF WEIGHT. At this point, she was eating less so my family and I figured she just needed to eat more to gain the weight back.
It wasn’t until our family trip to Philly at the end of June 2021 that made me feel HIGHLY concerned about my baby girl. This trip was in fact a blessing because it allowed me to truly observe her- to observe her mood, eating habits, thirst levels, and energy without my typical distractions. During our weekend trip in Philly I noticed the following things:
- She was not only using the bathroom excessively but was drinking A LOT of fluids throughout the day. She has always been a water drinker, but this time was different. She appeared to be ALWAYS thirsty now to the point she was jugging down anything she could get her hands on.
- Her eyes were beginning to sink in. Her face appearance was becoming more skeletal. In fact, her entire body was.
- She no longer wanted to eat anything because she was trying to avoid whatever terrible feeling that would happen once she ate. (Now we know her blood sugar was spiking after eating which was making her feel ill).
- She was now complaining of stomach pains.
- Appeared moody and very low on energy.
- Because I was becoming concerned about her, I would have her to sleep with me and that’s when I started to notice her breathing was becoming labored. Her breathing appeared abnormal.
….and even still, I had NO CLUE what was going on but had every reason to be concerned! The cherry on top, or should I say the LAST cherry on top (because there were a lot of cherries at this point), she vomited on the drive back to NY from Philly. At that point, I was determined to take her back to the doctor the following morning because it was clear something was wrong! That night, I just couldn’t sleep. I watched her sleep all throughout the night and checked her breathing periodically. I stayed up all night doing some research of my own to find possible conditions that could cause her symptoms and the first thing that popped up was, Type 1 diabetes. Based on my own research, I had now felt confident that my daughter had Type 1 diabetes, but I held on to a little bit of hope that I could be wrong.
By the next early morning, Phoenix and I were in the doctor’s office. The first thing they did was check her glucose levels, after hearing our concerns. I could hear the doctor and the assistants talking about what was going on from the exam room and it didn’t sound good. The entire time, I’m thinking “My daughter must have Type 1 Diabetes”. Five minutes later, the doctor enters the room and says “She most likely has Type 1 diabetes. Don’t go home. Take her straight to ER”.
There at the ER, her diagnosis was confirmed. At this point, Phoenix was already in the state of DKA (diabetic ketoacidosis), which is the state most children are diagnosed in because their family doesn’t know, so the condition worsens due to lack of treatment. Diabetic ketoacidosis is when the blood becomes acidic from excess sugar sitting in the blood which is extremely dangerous. Additionally, the body is no longer receiving glucose for energy, so the body begins burning fat for energy which was why she had become so skinny. In a worse case scenario, DKA can result in a diabetic coma or death. One of the doctors described my daughter’s condition as severe DKA and stated that my daughter had “a very strong body”.
Here’s where I’d like you to use your imagination as a reader to imagine how I must have felt as a mom to learn that my daughter had Type 1 diabetes. I’d need a different blog post for a different day to explain the emotional toll it initially took on us, how we manage, and how it has transformed our day to day. For the purpose of this read, I want to continue explaining the details of the diagnosis.
After her admittance into pediatric ICU, she spent 3 days in the hospital receiving IV fluids and a combination of other things to help flush the acid and sugar out her blood stream. I spent the first night crying and looking to blogs by other Type 1 parents to find hope and comfort. I stumbled across a few of blogs by Type 1 parents that helped me tremendously! I don’t know anyone personally who is taking care of a Type 1 diabetic, which can often make me feel alone. Therefore, I rely heavily on blogs and Facebook support groups to guide my faith and knowledge. My daughter and I are always so excited to meet others like her in person! (It is also why it was important to me to create this blog post despite how hard it is to write about it – to pay it forward).
While she recovered, I had to learn everything there was to learn to be well-equipped to work as my daughter’s pancreas, immediately! THE MOST FREIGHTENING THING EVER! While many parents only need to worry about soccer practice, school pick-ups and drop offs, homework help, amongst other things- I was now responsible for all of that AND working as an important organ! She now needed to receive insulin before eating anything. I had a crash course of my life while in the hospital. After my one day of grievance, I had returned back to full blown mommy mode. By the time we left the hospital, my daughter had more energy, was happy, had gotten her complexion back, gained a very few pounds back, and was back to her typical self.
We are now 1 year and 2 months in and my daughter is doing well! 😊 At the time of her diagnosis, it was extremely hard to believe that it gets easier, but it does. You learn more. And just like anything else, you get better with practice and knowledge. And unlike a sport, a skill, or a craft, this becomes the most important thing that you must get better at, because your child’s life depends on it! Some days are hard, but we try our best to live in a space of gratitude and faith. We do our best everyday.
For the first few months, we did everything manually by using the glucose monitor to check her glucose levels, the injection pens to deliver insulin and straight up pencil and pen to add up carbs and calculate the insulin needed.
She is now solely using technology (along with my management) to automatically check her glucose levels and to deliver her insulin throughout the day. She has a Dexcom G6 to check her glucose levels, in which her levels are sent right to my phone, my husband’s phone and hers. She has an Omnipod which is a wireless insulin pump that delivers her insulin in a click of a few buttons. Having the technology has helped tremendously in keeping her blood sugar levels within safe range throughout the day- and it helps avoid her needing multiple injections.
My daughter’s days do not always look exactly like a day of a typical kid. She must be WAY more responsible and aware in her day to day but she’s strong! It’s important to me that she is still able to have a kid-like life and that she never doubts who she can become because of her condition. She hasn’t shed a tear over her diagnosis and doesn’t spend time feeling bad for herself. There are days where it sucks and there are days when she’s frustrated but she has shown so much patience and bravery throughout this entire journey. There’s no better way to explain it other than, she’s a WARRIOR!
She’s Type 1 strong!