Type 1 Diabetes & the day our lives changed forever (Copy)
/It’s been a little over a year since I’ve written for my blog. It’s something I wish I had more time to do, but between balancing motherhood, my career and life it’s been hard to keep up. With the challenges life has thrown our way over the past couple of months, blog posts might be very few and far between for a long time. This isn’t the end of a chapter for my blog, but I did want to update on my life since I’ve been absent. If you’re reading this, you’re either family, a friend, a follower of my instagram/facebook or blog. Or you’ve stumbled here because we unfortunately share something in common in our lives. Type 1 Diabetes.
I entered motherhood with the same eagerness, joy and worry every mother has. I became a mother and thought I would teach my child about the world, and while that still may be true, never in a million years did I imagine I would be here.. hoping to teach the world about my child. But that is exactly why I’m here, writing this for the world to see. So the people in our lives and the people who enter my sons life in the future, have more insight into this disease that has taken over my family. I’m not here for pity, or sympathy. I’m here so others are informed, and educated. If it’s one thing we’ve learned so far, absolutely no one understands this disease unless they have gone through it themselves.
In May of 2022, my husband and I took a last minute trip to Vegas just the two of us. It was our first time flying out of state and leaving our son behind! We had a great time, and little did I know that would most likely be the last trip we took just the two of us for the foreseeable future. When we returned home I planned to start potty training our son. He would be 2 in July, and I was hoping to have him potty trained by his birthday. Things were going pretty well, he seemed to understand the potty, and would even get excited about it. He made it to the potty more times than he had accidents, but what I first noticed was how often he peed. He would go every 15 minutes on the dot, and it wasn’t ever just a small amount. I found it strange, but I continued potty training thinking maybe he just needs to learn to hold his pee. I thought to myself, well he does drink A LOT of water too. Maybe thats why. It is summer in Texas after all, I’m sure he’s just hot. I gave it 11 days until I made an appointment to bring him into the pediatrician. The day before I brought him in, I remember looking at him and thinking he looks skinnier. But again, I thought maybe he was just growing and getting taller. Later that night, I had put his diaper on and within about 30 minutes the diaper fell off because it was filled with so much urine. We did just get bigger size in diapers maybe these don’t fit, I thought to myself, still I was in complete denial that anything could be wrong with my kid.
We woke up the next day and had a normal morning, and I drove to take him to the pediatrician. I truly thought we would leave and go about the rest of our day. I even had plans to go home and garden with my mom after. We got the the doctor and a successfully got him to pee in a cup, I was so proud of him! Little did I know the news we were about to get and getting him to pee in a cup would be the last of my struggles. We waited in the room with our doctor while she asked us questions about his symptoms. The word diabetes hadn’t been mentioned yet. It looks like he’s lost 2 pounds, the doctor said. Then I proceeded to tell her the other symptoms. “well he was peeing every 15-20 minutes when I was potty training, and I noticed he was drinking about 48 ounces of water a day.” “Yes he does pee the bed sometimes.” “No, no other symptoms, he’s always been a bad sleeper, but other than that he seems fine. Still calm, I was waiting for her to say oh yea! he seems fine, probably just growing. I’ll see you guys at his next visit! But, I saw it on her face as soon as the nurse come in to deliver the urine test results. She immediately turned to me and said, “I am so sorry….” In that moment the world went black. my heart sank to my butt. I don’t even remember what she said, all I heard was “Nathan has type 1 diabetes, this is going to be so hard, it’s going to be so so hard. but you can do this. I know you can because you brought him in here SO early mama, you knew and you trusted your gut that something wasn’t right and you did it. Most kids are not sitting there like he is right now, most kids don’t come to me first. Usually they are sent straight into the ER.” I cried so hard and she hugged me, then gently said “you got this. But you guys need to go to Dell Childrens now.” Wait, what? I thought to myself. We’re going to the hospital? I thought she would tell me what to do when we got home and that would be that. I had no idea how much our lives were about to change. I knew it was going to be different and hard but it wasn’t until we got to the hospital that it really sank in. I was so naive to this disease, like so many are, I had no idea what the next 3 days would entail.
(For those that don’t know, type 1 diabetes is a lifelong, chronic disease where your pancreas can no longer produce insulin. It can not be prevented, cured and is not caused by diet. Type 1 can be fatal if not caught, or managed properly. Type 2 diabetes is a completely different disease. They are not comparable diseases)
My son, my sweet happy baby boy was diagnosed with a life threatening disease that is incurable. 2 weeks before his second birthday.
The next several days were a blur of emotions, shock, anger, denial, and sadness. All while taking educational classes in the hospital about his disease and trying to stay strong for a 2 year old. Diagnoses day and the weeks to follow was much like going through grief. We are mourning the lives we had before, the life that would never be again. As we were leaving the hospital I was SO nervous. How can I do this on my own without the nurses and doctors? I’m going to kill my child. I cried the whole first night home, and the days and weeks to follow. I remember the first day I finally said to my husband, “hey I don’t think I cried today” what an accomplishment. I will never forget those first few fragile weeks and the people who made it easier for us during the hardest time in our lives. I’ll never forget my sister driving down and getting us set up with a new phone for our son to track his new CGM, and getting me set up with an apple watch so his numbers are always easily in sight because I could barley think straight to do it myself. The first 2 weeks back at work were absolutely the hardest and I’ll never forget the clients and coworkers who made those days more bearable.
The months to follow have looked like this: wake up, check blood sugar, listen to podcast about diabetes, check blood sugar, treat a low, over-treat a a low, oops-give him more insulin, count carbs, check sugar, treat a high, treat a low, read books about diabetes, go to bed and hope for the best.
I quickly learned that this disease is a full time job, that is never fully taught. It’s been trail and error every day. There are no breaks whatsoever. It is around the clock care, its life or death. Every day is an obstacle. Every decision is crucial. We’ve absolutely had good days and when we do I feel like supermom. But good days usually come with some bad to follow. It seems like once you get it figured out, things change and start back over on the roller coaster of blood sugar control.
Being a mother to a type 1 child, especially a two year old means I don’t know what it’s like to fully fall asleep at night without checking blood sugars through the night. I do know what it’s Iike to sleep with one eye open, with my phone clenched to my hand in fear of missing an alert that could end my child life. I don’t prepare a meal without a calculator, measuring cups, or the proper timing of insulin delivery before a meal. I don’t know what it’s going to be like to drop my child off at school fearing he is in good hands of someone who will know how to take care of him. I do no what it’s like to feed my child sugar through the day and night- knowing that I am sacrificing his teeth to save his life. I do know what it’s like to give insulin late at night and pray I’m not too tired to make a fatal error. I do know the absolutely gut wrenching feeling of hearing my tiny 2 year old have a bad dream and say “no boo boo” in the middle of his sleep. I know what it’s like to hold him while he says “no mama” as I’m injecting his already bruised arm with insulin. I know what it’s like to pick up my next round of 200 needles, when it seemed like it not long ago we just picked up the first set. I do know what it’s like to know my husband and I can no longer take our annual anniversary trip to Fredricksburg because I couldn’t imagine leaving him through the night. I know what it’s like to fear my son being jealous of his future siblings, cousins, classmates and friends. The last thing you ever want is your child to feel different or less than. I now know what its like to see notifications all day long of high blood sugar alerts wondering which long term complications he can get from these high sugars. I know what it’s like for someone to offer him a sucker and I have to say no. I know what it’s like to one day fear a teenager driving or experimenting with alcohol- then add diabetes in the picture. I know what its like to hold a 2 year old down with my husband to inject what feels like a staple gun into his lower back every 10 days while he screams. I could go on forever.
I quickly learned that if I blame myself for this I will drive myself crazy, although I still carry that guilt with me every day. I think as a mother I will always wonder if there is something I could have done to prevent this. I’m still not sure why I was chosen for this. I’m not sure why I went through pregnancy during a world wide pandemic/lockdown, or had a traumatic birth experience, and then to be given the biggest fear of all everyday: the fear of losing my child. It just doesn’t seem fair. But I do know this has absolutely changed me. I am brave, and some days I am strong. I have become more fearless, and I hope that continues to progress. I know I will carry the weight of this for my child for as long as I possibly can, so he can be a kid for as long as he can. I will wear the fanny pack with his supplies, I will do the research. I will talk to pharmacies and doctors and I will keep fighting when I’m tired and weak and had enough. I hope to never let him see how hard this all is, so I will carry that for him until it’s time for him to branch out on his own. And when he does, I hope that I have set a good example of bravery and strength to fight this, confidence to control blood sugars. I hope he hears my firm, but gentle voice when dealing with pharmacies and insurance. I hope he never feels less than or lets this disease stop him from anything he wants to accomplish. I hope I can show him that.