Tuesday, April 26, 2011

Diagnosis Story

"There's no doubt in my mind that your child has Type 1 Diabetes. And there's nothing you could have done to prevent or stop this from happening..." Those words, uttered by an endocrinologist at Children's Memorial Hospital on April 30, 2009 are forever etched in my brain.

It's been two years this week, and here's our story.....

Leah was four and spring was just starting. She had just gotten over a virus, and a few weeks after it was gone I noticed the excessive water drinking.  We had explained to her that when she was sick it was important to drink water and stay hydrated. "Great!" we thought, she's listening to us. And of course, she was using the restroom much more due to the higher consumption of water, which seemed to make sense. Diabetes symptoms are quite easy to explain away.

But then she started acting weird. She was emotional, even more so than a normal 4 year old girl, and started staying awake into the late hours of the night. Leah was fully potty trained at 2, but she started wetting the bed a few times. I remember getting confused and upset that she was all of a sudden regressing or something...it just didn't add up. My friends and I thought she looked a little thinner, but she was also taller and we decided it was certainly due to a recent growth spurt.

It all reached a breaking point one very long night while staying at my parent's house 2 hours away. We went out for ice cream with family and Leah requested water immediately. Lots of water. I can still see the look on her sunken little face as she sucked down an enitre cup in one seemingly endless gulp. I explained she seemed tired and spacey because she hadn't been sleeping well lately.

But that night she literally did not sleep one second. Instead, she was up all night crying and demanding she had to use the bathroom even though I refused to give her anything to drink (not knowing that was the worst decision I could have made). I stopped counting at 17 trips to the restroom.  In the morning, she downed her juice box again in what seemed like one big gulp. We drove home and made a doctor's appointment for what I assumed was going to be a urinary tract infection. The symptoms of diabetes had crept into the back of my mind, but I never really thought that was actually a possibility.

We did a urine test at the doctor's office and waited for a phone call.

The next few hours that passed by are so vivid in my head still that it practically takes my breath away. Getting the phone call that ketones were present in her urine and it was in fact, Type 1 diabetes. The shock in my voice asking  "Can't it be wrong? How do we know for sure?" Grabbing 2 year old Lukas out of bed where he was napping and throwing the kids in the car. Calling my poor husband, who was out of town for work, and hearing the pain in his voice as I delivered that news. Calling a close friend and panicking about what would happen next. All the while, not really understanding what we were in for.

Ed got a flight the next morning and we rushed to Children's Memorial in Chicago. Leah's blood sugar was over 500 at admittance, and life as we now know it began. Three days of shock mixed with counting carbs, injecting insulin, and learning how to save our child's life. I don't remember crying in the hospital. Even as the endocrinologist uttered those words above, I remember tearing up but making myself stop. Between shock and adrenaline, I just made myself keep going, as any parent would. There's no time to break down when your kid's life depends on it.

Over the next few weeks, it set in and we went through the range of motions. Denying that life was changing only to find out it had in fact changed beyond belief. Grieving for the loss of our "normal" child. So, so angry this was happening to our little girl. These emotions are still there...it gets a little easier with time, but there's something about you that's just never quite the same.

But we've made it. Diabetes has a way of getting more complicated over time, and you learn as you go. I hate everyday that she has to deal with it, but at the same time am thankful for each day we've been given. I'm thankful that we went to the doctor that day in April and that we didn't lose her. I'm thankful that she's a happy, vibrant almost 7 year old that loves life.

I really, really want a cure. I hate the thought of her living her whole life with this. I don't want another parent to have to feel the hurt of their diagnosis day, and the pain in your gut that happens when you see that day on the calendar and the memories that start rushing back.

So as we're reminded of that awful day two years ago, we'll do our best to celebrate life, to enjoy the moment, and just take it one number at a time.

1 comment:

  1. These days will forever be in my mind. Getting that call and what to say, how to fix it, how to take my dearest friend's pain away. You are so strong and such an inspiration to ALL moms! I know sometimes you don't know when to speak up about Diabetes, but you have so much to offer to parents going through the same thing and teach parents who want to understand more about how our life choices effect our bodies. You are a wonderful MOM! You inspire me and I will always DREAM for the cure!