One Diaper Still Full of Sand, Two Bottoms Now Full of Insulin

Hard to do. As my fingers find the scroll arrow keys and I stare at the screen before me, tears distort my view and anger finds a significant, but temporary place to land its rage on my heart. This journal, until today's entry, reflects the year before IT all started. I haven't blogged once since our first hunch of Piper's disease. One year later, it's my time to pick up the pieces and lay them out nicely. Strength from the journey consumes me and forward motion has barely begun its momentum.

All the photos, anecdotes, and memories before today's post pertain to a time of a very different life. A year ago, all the same players dawned our hearts and home, but life as we knew it was not the life we live today. We LIVE now. We know life is precious, we KNOW this on an hourly basis because technology tells us whether our children are running on all cylinders or not.


Fragments of relevance clutter this entry. A time-lapsed jumble of words strung together to form a crisis collage for a new mama. A time machine of terror, if you will, and then acceptance and perseverance...


It all happened so fast, kinda like this:

Pediatrician's office. Pi had a sudden, very high fever. Pi also had her first accident in bed at night. Pi couldn't stop drinking so much milk or water. She had an accident on the way to to doc's office too. not like Pi at all. nurse said "betcha it's an ear infection, when they feel really bad, they get too distracted to remember to go potty."

Dipped Pi's urine. I told them it had smelled funny sometimes, especially after fruit. They dipped again. and again. I knew something was up. Piper kept asking for more water, no food, just water. They knew what was up, I could tell. I didn't, yet. Then they shared. Diabetes. Type 1. Sugar and ketones in her urine. High blood sugar and she hasn't eaten all day. "Call your husband" they all said, "Call your Mom" my doc said. "Sit down, can we get you anything?" They said everything so, so nicely. Too nicely?

"Do you want us to hold baby son while you hold your toddler daughter?" She seems sleepy. Please drive to UCSF immediately, Endocrinology will be paged upon your arrival. "Please don't let her sleep yet." they tried to say carefully. My little girl, all of 2 years old, drinks so much, pees like a geyser, and will not run and jump like the other kids. Her weight is down since last week, at least 20%. I have a baby boy on my back snoozing and my daughter in my lap. Oh, boy. How can I do THIS? I can do this. I'm not as amazing as I pretend.

I'm simply amazed, lost in a maze at this point. No, I am amazing, let's do this. Hospital stay, Piper makes so many friends. I sit in hospital classrooms all day and evening receiving more invaluable education than tolerable in a 3 day period. Everyone loves Piper, even with Diabetes. Of course they do. I can't poke her one more time. I have to. it hurts her more than it hurts me, no doubt. Here's to your health, ouch.



Mother's day, one month after Piper's diagnosis - learning to handle, eager for her insulin pump they all keep promoting, tired of so many shots. Evan's diapers are so heavy, he drinks more than he should, he seems "out of it" some times he just stares and seems so still and tired. He vomits after dinner, grab Piper's meter, his clean finger and one drop of blood tell me 198 BG. No, not again. Not him too. NO. Squeeze a diaper onto a ketastick. Ketones present. NO.



Track Evan with Piper's meter UCSF says. It is his birthday, his first birthday, he has a chest cold. We've only tracked him a few days. He is so listless. He isn't right. Whose baby is this? He doesn't look like Evan. Ketones in his urine, 290 BG and he hasn't eaten all day. UCSF again, special room this time because of his cough and fever, alienated. Alone. No new friends. Little support. So different than Piper's stay. You know the ropes, they say with a pity smile. Sorry, they say. You are a supermom, they say. I want to be a regular mom, I say.

No hospital classrooms this time. Just a room and a bed, nurses with masks, and a very sick, croupy little boy. No playroom, no refuge. The stay for Evan at UC is shorter than Piper's, seems so much longer. Just baby and me. Too hard. Could be harder. Hospital bracelet on his little wrist says his birthdate 05.14.07 and his hospital admitting date 05.14.08. Dumb numbers.



So many children and mamas have it harder. So many children and mamas have it easier. Comparisons are dangerous. Our new family friend, our lifeline is both children's endocrinologist now. He is amazing. Best mother's day present ever he says to me - rDNA insulin and you have great health care insurance, pumps are next, for both. Just master the shots first. Right. Genetics gave us beautiful, smart and outrageously funny children...and faulty pancreas cells. I can do this. All I have to do is: Number, Insulin, juice, cracker, number, insulin, ketones, pump, set change, number...

And, I did. WE did. We do. That's their story and we're sticking by them, every step of the way. One day they'll laugh at our bothersome questions - "Did you change your infusion set? New batteries in your pump? Log your numbers? Cover your Carbs? Turn down your basal rate for sports? Caught a cold? Did you check for ketones?"

But, for now they stick out their tongues at us, ask for tickles, and run like crazy. They run and run and run, then jump, and dance and play all day. They convert sugar into energy from every ounce of organic food source. Conversion we took for granted is now in our hands literally. Our hands are capable, our minds are strong, and our hearts are... healing. Piper and Evan fulfill every need and desire I have to live life.


Next post - light and fluffy with photos and funny talk. It's all funny around here. Humorous perception perpetuates laugh lines and great abs! Thank you to everyone who ask me to pick up my blog again. I needed to. I'm glad you said something. Now, don't you regret asking? Read a cereal box instead, more content - less filling!