She

She calls herself "O-wee-ah."

She knows her colors, but likes to try and talk you into believing that everything is pink.

She gives me a million kisses a day.

She'll tell you, if asked, that her daddy's name is "Hey, Marc."

She gives the tiniest of pats on the back when she hugs.

She's twenty-two months old today and while I used to marvel at how old she was getting, she seems very much my baby right now.

Marc is going to participate in one of the Juvenile Diabaetes Research Foundation's Rides for the Cure in September. We have a goal of $4,000 that we intend to exceed.

If you would like to donate in Olivia's name, please follow this link.

Ride for the Cure

Thanks so much!!

I am all over the place. In any few minutes that I can grab, I am reading someone's archives to learn about their child's diagnosis and their first weeks at home, or I am talking to someone on the phone, or I am reading Understanding Diabetes. I am slowly learning.

But here's some stuff I didn't learn in the book.

Walgreen's? I get why no one likes that place. Prices? Not so low. Pharmacy staff? Not so helpful.

Test strips? They are about a dollar a piece and when you run out two weeks into a script because you have been testing your newly diagnosed daughter a lot because she is up and then down and then back up and you never really know where she's going to be at any given moment? Insurance won't pay for that next box.

I am also learning that there are important things that no one bothered to mention to us before we left the hospital.

Things like lows at night and how we need to check for them.

Things like checking for ketones when O goes high. (After eating too much during the Great Hot Water Heater Escapade of 2007 on Saturday, she was 283. Should I have checked her for ketones?)

Are we checking her too much? Not enough? Too soon after meals?

Why is it so hard to get her numbers up at night despite having cut way back on her dose and shoving her full of food?

I have so much to learn.

Sitting under the window in a patch of sun, watching her play, I feel it gnawing at me. I can't buckle under...there's too much I need to do for her, too much I want to do with her. So I turn, as I often have, to the Gospel of Dylan. And we dance. And I feel better. For the moment.

Life is sad
Life is a bust
All ya can do is do what you must.
You do what you must do and ya do it well,
I'll do it for you, honey baby,
Can't you tell?
- buckets of rain

I am finding this book to be extremely helpful right now. (Thanks, Alish!) It's easier for me to process than some of the other things I have been reading because it is has an "OK, here's what you do" kind of tone.

Something I read last night caused me to lay it aside though. The author, whose two sons were diagnosed at 6 and 7, exactly one year apart, tells the story of how after five years of finger pricks and injections, she went to see a counselor because the finger pricks were so difficult for her. The counselor pointed out that the images that she had in her mind of her son's hands were of that of babies and that her sons were pre-teen boys. And just like that, she was able to let it go.

Olivia is a baby. And she still has baby hands. The finger pricks are hard. The little cotton balls with tiny blood spots on them are hard. I have to tell myself again and again that it is for her health, it is going to be a constant in our lives now and I need to adjust. I should really just follow her lead, because she is adjusting to that aspect beautifully. I so hate to hurt those tiny fingers, though.

Happy Birthday, Alish!

This year more than ever I wish that we were celebrating your day together!

You have been a rock for us this past week (and every one before that.) Your creativity, compassion, and dedication make us feel very loved indeed. Every time Olivia picked up the "phone" yesterday morning, she was calling you and Ivy. Wonder where she learned that?

Hope that this year is very good to you...as good to you are you are to me!

i love you,

p.

Double digits are not my friend.

I don't know what's going on with O's blood sugar; it's been all over the place this weekend, but mostly low. Like scary low. And I just don't know enough about all of this to know what to do. Is it too much insulin? Not enough food? The honeymoon period? I have no idea. We have cut back on her insulin. She's eating well and seems for the most part to be feeling OK. I talked with the nurse practitioner on Friday. Marc talked to the nurse practitioner on Friday. We got conflicting advice. I called back a second time and got no reply. I'm not sure what to do. It's so frustrating.

On another, brighter note...to all the folks in the on-line diabetes community who have commented and emailed...I don't have the words to express how much I appreciate you.

God, how I want to hang my hopes on this.

Looking back, the drive to the hospital seems almost peaceful, though I know I cried the whole way. It was evening, but it felt late, quiet and calm. O was wide-eyed in the back and I tried to make my voice light for her, though she had seen me crying the whole time I packed our bags. Marc's voice broke as we sat a long moment at a stop sign. "They said you were a good mom for figuring out so quickly that something was wrong." I wanted him to just keep driving and driving.

The staff, nurses, doctors...everyone was kind, sweet to O, apologizing to us for asking the same questions over and over. It took me awhile to realize their questions weren't to rule things out or to look for answers...they already knew that she had diabetes, it was just a matter of finding out how long she had been showing symptoms. Finally I had to ask, "There's no chance that this is something else?" The doctor looked at me the way that TV doctors look when giving that "I'm afraid not" speech. So that was that.

We were lucky. She wasn't dehydrated, wasn't feeling any abdominal pain or vomiting. She didn't need an IV. In fact, if you didn't know her, you probably wouldn't have known there was anything wrong. The doctors kept commenting on how good she looked, but at the time, it was only some small comfort. The lab came and took her blood; the nurses taped a bag on her under her diaper in order to collect urine and gave her an insulin injection. We were told to settle in. We would be there for at least three days.

The rest of the time is a blur of phone calls and visitors, finger sticks and injections, and sessions with diabetes educators and dieticians. I sat through the conversation on giving injections in a bleary-eyed slump. I wanted to grasp what they were saying, but there was a part of me that kept thinking that if I could just get her home, this would all go away. I wasn't going to need to know this stuff.

Olivia's blood sugars went up and down; I never knew what to expect, never knew how the staff was going to react to each reading. What I did know was the she had periods during each day when it was obvious that she felt about 200% better. She played, she shrieked, she insisted on being pulled up and down the halls in a wagon. She was a new child. When her blood sugars started to go up or down, it was obvious from her behavior. My heart broke again and again at the thought of how badly she must have been feeling for months.

Soon enough they started talking about sending us home and I realized that I needed to snap out of myself. We were going to be on our own and I damn well better know what needed to be done. I wanted some hard and fast rules about what to do, when to do it, how to react when it didn't work. But everything seems to have a contingency, too many variables for me to feel comfortable with any of it. How many time do I check her blood sugar? It depends. What do I feed her and when? It depends - she's a toddler; some days she's going to eat and other days she's not. How much insulin depends on how much she eats. There seem to be few "Do X when Y happens" rules. It makes me as nervous as I have ever been.

But send us home they did. She fell asleep in the car and I watched the city go by as Marc drove, reversing our course from just a few days earlier.

I don't even know where to begin. There's so much I want to say right now, but some of the words are sticking. I don't want to see them in print because it's all going to be that much more real. 2007 is kicking my ass. I want to hit delete, go back to somewhere last summer and head off down a different path.

Olivia has type 1 diabetes.

All the behavior that I have been bitching about to Marc, crying that she was draining me and that I couldn't keep up much longer...the clinginess, the irritability, the big tantrums...Olivia has been sick. She's probably been sick for months, but we really only started to recognize physical symptoms two and a half weeks ago, a thirst we couldn't quench. She was constantly asking for water and milk; if put off before a nap, she woke begging for a cup of water. Given the cup, she would drain it and ask for more. And she started soaking all her diapers, filling them so fast that I couldn't keep her, her clothes, her sheets dry. I knew something was wrong. And I knew that these were symptoms of diabetes. And I was nervous, but I never for a second believed it could happen to her.

I had just taken her to the doctor last week for a bad diaper rash that we couldn't clear up (another symptom of diabetes, but I didn't know that at the time). Tuesday, I called back to his office and told him what was going on. It could be nothing, he said, but the only way to know would be to bring her in and let him check her out. That, I knew, meant a blood test and part of me refused to think that there was any good reason to put her through all that. But by Wednesday afternoon, I knew that something was wrong, bad wrong. She looked awful, droopy-eyed and worn out. She would barely leave my lap when we met Francene and Q for a play date and asked over and over to eat. Thursday morning I called and made an appointment for the afternoon. By the time we needed to leave the house, I was sick. I don't know if it was vertigo, a premonition...I was dizzy and vomiting, practically lying on the floor of the bathroom. I had to ask O to go get my phone so that I could call Marc. I was so dizzy I could barely move, much less walk. Maybe we should cancel the appointment, I thought.

But Marc came and got her, loading her up in the car, after helping me to bed and putting what I later realized was the bottom of her potty chair next to the bed. I slept until he called to say that they were on their way home. Her blood sugar level was too high for the machine at the pediatrician's office to read. They had taken a second vial, sent it out to a lab and sent Marc and O home. I knew this was not good news. I knew that the alternate explanation of "The machine could be broken" was unlikely, but I didn't know how much I was hoping for a miracle until the doctor called and said, "Bring her to the hospital; we'll be waiting for you."

She had just gotten out of the bath. Wandering around in the pink footie pajamas that she's almost outgrown, damp curls on her neck, trying to tell her daddy "night-night"...there is now everything before that moment...and everything that will come after.