It was really scary to just be there and know that I have diabetes and you can't get rid of it. What does this mean? Can I still play soccer?
What do I have to do on the daily? And like how does this really do anything to my life? Like what does this affect? I remember when I was in the hospital and you were in the hallway crying and talking to like everybody, calling everyone. And I said, mom can I have something to eat?
I'm really, really hungry. And she said you can't eat anything right now. I was diagnosed with type 1 diabetes when I was four years old.
I picked her up at preschool and her preschool teacher said to me, you know, Taylor had three glasses of lemonade for snack today and she went to the water fountain five times and she was only in preschool for two hours. hours a day. So that was a lot.
We were at a soccer tournament and I really was watching how much he was running off to go to the bathroom. He was peeing more often at nights especially. We would go through maybe a diaper per hour.
He also had an insatiable appetite for liquids. To learn that she had to have injections for everything. There's no words to describe what that feels like as a parent.
I think it really hit me when I came out of the pharmacy and I took the biggest bug. out of the pharmacy with like three months worth of supplies and it really hit me at that point like this is something that we we're really gonna have to deal with for the rest of our lives. You're at a point in the beginning where there's so much information being thrown at you're thinking how am I ever going to do this?
From my point of view, the first thing to do is to breathe. Perfection is not the goal. And I remember the folks at CHOP telling us that early on, is that perfection is not the goal.
There are going to be highs, there are going to be lows, there are going to be mistakes. When you leave CHOP, you leave with a plethora of information. And it seems like the world is on your shoulder and that you have to get it. You have to know what you're doing to be able to care for your child.
But you have directives. You have a care plan, you have the main number, you have the emergency number, you have the social worker's number. All of those supports are put into place so you're really not by yourself.
I'd say it's almost like coming home with a newborn. You don't know what you're doing at first and then all of a sudden you start to realize you know what to take with you when you're leaving the house. You know what certain things you can do.
foods are going to do to his blood sugars. So it is, it just takes some time. I would say probably that a month to two months is when we felt like, okay, we can do this.
It just gets better. It gets better. It gets... It gets, I promise you, it gets better. We just created a routine.
Who checks blood sugars? Who does shots? Where do we do it?
How do we hold him? How do we, whatever it is that makes you more comfortable. And the moment you find something that works, stick to it.
It just becomes life. You know, they would say, oh, you're going to know the carb count. You're going to know what this means.
You're going to, and it's true. She's great. Everything is fine.
Our decision of where she went to school was. is there a school nurse there full-time? The continuous glucose monitor, which is attached to her, and it sends the data to the phone, and mommy and daddy can look at her at school.
Last night, she had an overnight with her girlfriend, and our anxiety level was negated almost completely. I had my phone right next to the bed so I could see what her blood sugar was at a friend's house on the other side of town. It's really been a game changer for diabetes for her.
He knows that testing his blood sugar is important, and we We just try to make him actively engaged in the decision making process. We try to put a spin on everything, like a positive spin on everything. Like when he first got his sensor, you know, he's real into superheroes, so that was a superhero pack that we get to put on his arm.
Little things like that. What caused the greatest anxiety was am I going to be able to continue to be as active, to play sports, to play soccer and the folks at CHOP were great. I mean from day one constantly reminding us and reinforcing to him that he was going to be able to do all the same things he was doing prior to the diagnosis.
If you really We would like to continue with your sport, like continue with your sport. It shouldn't hold you back, just follow what you want to do and just watch as you go. There's no limitation.
Just because Mari has diabetes, what does that mean? It just means you, you know, you do the normal things that a normal person should do. You take care of yourself. You take care of yourself. That's it.
From what I've learned now, myself having it for 34 years and had a full active life done in many... things is that you'll be okay. Reed's a ball of energy. He's either riding his bike or riding a scooter.
He loves golf, mini golfing all the time, plays soccer, plays basketball, plays baseball. Diabetes has just kind of like become like a regular part of my life. You'll be a pro at it and you don't even care anymore. I'm planning on going to West Chester University to major in music education and I'm gonna be a part of the marching band up there and I just can't wait to be a music teacher. She has her whole future ahead of her.
She has her diabetes under control. She knows what she's doing and when Taylor wants to do something she does it. She's a charmer. She's just she's gonna have a great life and she is determined to not let diabetes stop her from doing anything.
I think like any 15 year old he sees himself as a professional athlete. If he doesn't end up being a professional soccer player, I really think this whole experience has shaped his view on what he might want to do when he grows up. I think he wants to help people.
Diabetes just isn't going to hold me back with anything. I don't let it hold me back. It's just part of my life.
I don't really change much. I don't really worry that it's there. I don't really care that I have it.
It's just another thing. Now I just have to watch what I do, watch what I eat. I don't have to change anything.
I'm still me. You can still do whatever you want to do, like play music, be a lawyer, like be a cop, become the president. The diabetes is just something that he has to deal with.
It is what it is, and we're going to manage it, but that's not going to limit him in any way, shape, or form. He's already great, and we're just going to keep him on that path of greatness regardless. So hopefully you'll be seeing President J some days.