2 years ago...

--2 years ago today our life got divided into "before diagnosis" and "after diagnosis."

--As much as we try not to let her diagnosis define us, to some degree, it does.

--2 years ago our life spiralled in a new direction...one we didn't plan on.

--2 years ago we got a crash course in Type 1 Diabetes management. After 4 days we were sent home to care for and, most importantly, keep Sydney alive. It was more terrifying than when we took Morgan home from the NICU.

--2 years ago today I wanted to open a can on the nurse who, upon being admitted, asked if Syd were an organ donor in the event she passed away.

--I realize it's protocol but when the mom is sobbing and the kid doesn't know what's going on yet and the father has yet to show up at the hospital COME BACK LATER...ya not ok. Use tact.

--2 years ago Sydney, literally, was dying. Literally, in every sense of that word. W/out treatment and intervention, she would have died. Not that day or the next. But, her doctors said, w/in the next 2 or 3 months she would have been gone. That's not me being dramatic--I am not a dramatic person to begin with--that's me telling it like it is.

--2 years ago Syd's doctor was reassuring us we did nothing wrong to cause this auto immune disease.

--2 years ago I didn't believe him.

--Today, I do believe him but it doesn't always take away some form of guilt.

Any diagnosis will resonate in our minds forever. Certain events make an imprint that can't be erased. I'll show you what I mean. I'm going to type a word and you will remember things about the event. "First Kiss." "9/11." "First job."

See what I mean? So, when you find out your child has a disease that can't be cured. One that could claim her life along with a host of ugly complications--you're going to remember that day.

To read my blog post from when she was diagnosed, click HERE. I periodically go back and read this post. I still remember it so vividly--some things fade over time--but I remember most of it. I remember how naive and unfamiliar I was from being blindsided with Type 1 Diabetes. Back in September I did a "random thoughts" post about her diagnosis and more details I remembered. It's HERE.

I can't believe it's been 2 years. I can't believe how many shots and pokes she has had during this time. The other night I was laying in bed and I realized that Syd tests her blood sugar, on average, 300 times a month--and every one of those pokes result in a blood sugar number that Loren and I have to analyze. Her fingers get poked and bleed 300 times per month. Every month. Forever. It was a little slap in the face to realize--or re-realize--this.

For a brief time our world stopped. And when it began again, we were headed in a new direction. We were landing in Holland. I realize most of this commentary is me walking through my thoughts. Thinking "out loud." It's such a big day for those of us who deal with this or any disease.

Maybe some of you are reading this and don't understand why I'm making a big hoopla out of it...why it's an emotional day for me...and that's ok. I pray you always will wonder and will never have to know a day of diagnosis. The day that will forever remind you of "before" and "after." With that said, enjoy the pics.

~These were the last pictures taken of Sydney before dx. These were the day before we got the news. It was Grandma Linda's birthday party. I knew something was up with her. I knew she had an appt the next morning. I thought she was getting sick with something. It really bothers me looking at these pics and realizing what she had for dinner with no insulin in her. Sloppy Joe. Mandarin Orange Jello Salad. Chips. Regular Soda. Cake. Ice Cream. What did her blood sugars do that night?


~This pic was a little while after dinner and cake. She looked off. She probably felt terrible inside. But we didn't know the storm that was going on in her little body. The next morning I almost cancelled her appt. I thought her doctor was going to think I was crazy that I was concerned because my daughter liked to drink alot of water. But that night she woke up 3 times to go to the bathroom. Maybe it was just a bladder infection? It would get treated. She would get better.


~But that's not quite how it happened. She got dx with Type 1. We were sent directly to the hospital. We learned how to keep her alive. We learned how to hold down a screaming 4 year old and give her a shot. We learned how to tell her, while tears ran down her face, "No, your blood sugar is too high for a carb snack, but how about some cheese?" I wouldn't do her shots til closer to the end of our stay. I remember the nurse telling me it was time I do them. I remember the first time I tried. Loren was holding Syd down. She was screaming, "please mommy don't. Please don't hurt me mommy. Please, I don't want a shot mommy." I stood for a couple minutes, crying. I was using a needle to pierce her skin. It took every ounce of courage I could muster to give her that first shot while she screamed. It was hard. Very hard. But, just like brushing your teeth, pretty soon the shots became second nature for all of us. (When I compare it to brushing your teeth, I mean in habit--not simplicity. There isn't much that is simple in T1.) We did learn something quite valuable...

I realized a couple months after her dx how lucky we are to have a disease that has a treatment plan. There was a time, not too long ago, where Type 1 was a death sentence. There was a time where I would, today, be visiting the headstone of my daughter who passed away shortly after dx because there was no treatment. We are very blessed in that regard. Now, we just gotta find that cure! :-)


~She was a pretty happy little girl in the hospital if we weren't giving her a shot. We had non stop visitors and realized how loved we were. Syd got gifts and activities to keep her busy while mom and dad were in information overload.


~My sweet little girl at the hospital. She is brave. She is strong. She is a little hero.


And so, on this day 2 years ago, we landed. Our flight attendant said, "please unbuckle your seatbelt and, Welcome to Holland"...

By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.