Diagnosis Story

Year One

It has been exactly one year, this Saturday January 9th, 2010, since Gracie’s diagnosis with Type 1.

That’s 365 days. That’s 525,600 minutes.

I think of how close we came to losing her to Type 1. My heart starts to break when I think about it too long. I can’t go there, I just have to think they we were lucky, we noticed, we caught it in time. We did. I should stand and applaud us for noticing and taking action. I twist my brain into thinking these thoughts when the diabetic coma she could have been in slips in there.

I think I spent about 500,000 of them worrying.

I took Grace to the hospital for some symptoms that were classic Type 1 – thirst, frequent urination, weight loss. We ended up spending 5 days in the hospital. When they admitted her, at 3 am in the morning, her blood sugar was in the 600 range.

The 5 days are a blur to me now. Countless IVs, tests, doctors, nurses – oh the nurses!, bottles of Novolog, bottles of Lantus, those damn hospital beds that are not comfortable, giving her a bath and cleaning her in a hospital tub, waiting, waiting, waiting, the playroom across the room from our room – which was our saving grace during our entire visit, nutritionists, carb counts, whiteboards filled with mathematical calculations that stretched my brain in throbbing, headache-inducing ways, our kindly endo who came in and first words to me were ‘I am so sorry she has Type 1.’ I broke down and sobbed as I sat in the rocking chair, rocking, rocking, endless rocking, as he spoke of genetic history, care, books, education, a long life, complications…

When Grace was first seen that night we drove to the ER, she screamed. You see, her grandmother – her heart, her soul, her dear grandmother – had passed away almost one year ago. She saw countless hospitals and ERs in her 5 years with Mom-mom, enough to know that hospitals are good, and in her mind, very, very, very bad. Bad in that they let people die. That’s the workings of a 6 year old brain. That was why she was screaming that first night.

Do you know what she screamed? Over and over and over.

And as I held her, they inserted IVs, tested and looked at me like I was crazy. Bringing this child who screams about death into their ER. I will never forget their faces. They knew no backstory. They must have thought she was crazy. I was thinking, God, she is screaming something that I want to scream – “Don’t let her die, please dear Lord, don’t let her die.”

You see, for me, as it always has been in my life, I have to go down, way down, to the depths of the low, even below the depths of the low, before I can rise up. I had to have those experiences to bring me here, to this moment, the about-face of that one.

I have accepted Grace’s diabetes. I can teach her what she needs to know about diabetes. I can show her what good care is. I can connect her to others who have Type 1, so that she can not feel alone. I can endure the lows, the highs and it all. I am strong.

She is strong. She is resilient. She can face her diabetes.

It took me about 500,000 minutes to get to this place.

So, while I sat there one year ago in that hospital room and thought Grace’s life, my life, and my family’s life had come to an end, I needed a reminder that life is a circle. It was the beginning. The beginning of this journey with Type 1. Of a new family, one that is stronger, more capable, more connected, more funny and more focused than before.

This diagnosis and life is not a death sentence. We walk with people beside us who have been there, who are still there, who are showing the way to live with this disease. There is love from our families. There is support on-line and in-person. There is friendship beyond measure. For all these people in our lives, I thank them all, from the bottom of my heart, for showing us the way and lighting the path on which we travel.