Monday, April 03, 2006

You handle it

Reading Sandra's post started me thinking about O and how my ex-husband and I handled her diagnosis. For so long, I knew there was something wrong with her. She was listless and seemed to be losing abilities - first it was a few words, eventually it was the ability to walk. And no one would listen to me - not the doctors, not my mother and definitely not my soon-to-be ex-husband.

So I pushed on. I pushed for something to be done for her, for someone to listen to my pleas for help. Most of the time, I felt like I was in a dream, screaming and screaming, but nothing was coming out.

Finally, I got the pediatrician to do something. I took her in to the pediatrician AGAIN, for a diaper rash from hell. The exhole wouldn't leave me the car that day, so I pushed her stroller the three miles to the doctor's office, then pushed it back. I hadn't even gotten my coat off after getting back to our apartment when the phone started ringing.

"You need to bring her right back to the hospital. She has sugar in her urine and it's very high."

"Is that bad?"

"Yes. Get to the ER. Now."

Well, fuck. Called a cab, since ex-hole still wouldn't come home from work (or, more likely, the bar) and sat in the ER with O, who was almost passed out at this point, and A, who was more than a little freaked out, while doctors drew blood and started IVs and waited for the pediatric endocrinologist to show up. And, of course, the ex-hole.

Her blood sugar was something like 980. This number meant nothing to me at the time but now, still, manages to convulse my heart with paroxysms of fear.

And that was that. She has diabetes, they said. You have to do X, Y and Z, they said, and give her shots and check her sugar and see us every three months.

So that's what I did. I kept logs, I made her 30g carb meals and 15g carb snacks. I made sure she ate every 3 hours. I made sure we had test strips and syringes and insulin and log books. And we never talked about it. I'd try, but he wouldn't. It wasn't to be mentioned again. So we didn't.

And I can't blame the divorce solely on the diabetes, but it did open my eyes to the fact that he just wasn't ever going to be there, that if there were problems, physical or mental, then they were MY problems and he didn't want to hear about them. And that the answers to most of his problems lay in the bottom of a can of beer.

This is the way it's been since then. Just me (only occassonially falling apart) and O, plugging along, doing what needs to be done. Only she and I talk about it. A lot. We talk about site locations and new treatments as they become available and other d kids and camp and all kinds of non-diabetes stuff, too. And I talk to TCBIM about it, and anyone else who will listen.

And I'm so glad to have this place, even though I don't write too often about diabetes, because when I do, I get you guys. And you guys? You guys rock.

16 comments:

Sandra Miller said...

It's horrible that you and Olivia have had to go through so much alone.

Damn him.

But Julia, I am very glad you found your way here.

morethan said...

geez, your story made me tear up (pregnancy, maybe?). how awful that you should have to go through such a hard diagnosis on your child (which as a mom, is worse than being diagnosed yourself) alone! i can't even begin to imagine the strength that took... to educate yourself and navagate through those first few months. you're such a great mom. your babies are blessed by you and O is going to continue to grow strong because of the example you've been.

Beanie Baby said...

What a very scary thing. How awful that the doctors were so unresponsive, and your exhole, well. Words don't suffice. I can't believe it had to get that bad before anyone would pay attention!

You've done an amazing job, with very little support.

Jamie said...

Like the others have said, you have done amazing, Julia. I am glad that you now have the support, but it breaks my heart that in the beginning - you had none .... and how no one would listen to you.

Hearing others stories of diagnosis always hits a nerve with me, as I can feel what it's like to be there - and it's not a nice place to be.

You're a great Mom and you're doing a wonderful job :)

And, for what it's worth, I think the O.C. rocks too :)

Penny said...

The fact that you walked 3 miles to get your child to the Dr. shows what a dedicated mother you are.

I'm sorry you had to go through it pretty much alone.

Hey, but now you've got us, and as you said, we rock!!! :-)

Bec of the Ladies Lounge said...

Hi there, am here following a comment you left on our blog recently. so sorry you went through such a difficult time with the diagnosis. My husband is a Type 1 diabetic although he didn't contract it until his 30s (still counts as 'juvenile' - odd, huh?)

Sounds like you're everything any kid could want from two parents (and more besides!) - good luck with it all.

Bec

Sarah said...

{hugs} Even though, I was MUCH, MUCH older when dx'd (almost 17). My mom for the whole summer before I was dx'd knew something was wrong. Everyone told her I was just suffering from "normal teenage angst". But it wasn't MY normal angst..LOL You are a loving mother, who has and will continue to do the best for your kids!!!

Its amazing how a lot of the times its not only the D person who feels isolated, but the parent/s too. I'm so happy you have the OC and our little group to toddlers to fall back on too!!! (by the way, will I see you at Lupa?)

Nicole P said...

Aw. Julia, thank you - for finding us. For sharing. For 'getting us' - even when we're talking about 'only being able to make it work when we're high.'

980? That's the closest bs level anyone's ever had to mine when I was diagnosed (at 1020... yikes.)

You are impressive, Julia. Stronger than most -- and it seems you're working on ensuring that Olivia has the same kind of strength.

julia said...

Thanks, guys. I wasn't fishing for compliments (although they're very nice), I was just trying to compare how I never had that mourning time when O was dxd.

Sarah - Lupa? What's that?

Joke said...

I am aghast at your ex.

I'll have his card pulled at the next meeting of the Patriarchal Hegemony.

Did you ever shave his head to count the sixes?

-J.

Sarah said...

Next Mtg of the Toddler's Group. Lupa Zoo. Sunday after Easter, 1pm I think. Email me and I can get you directions, if interested

blogthis.sarah @ gmail dot com

Shannon said...

Julia,

Brendon was in the same condition as Olivia by the time he was diagnosed.

You've said so many things that I could relate to...that I could actually match word for word practically. Maybe that is why I love this community so much...we're all soul mates.

I'm so sorry your ex was nothing more than a burden. Olivia will always hold you in her heart as the one who loves her most.

You're a really special person, Julia :)

Shannon said...

After reading your comment, I know you weren't fishing for compliments, but we all mean what we say here :) It's nice to get compliments sometimes.

terrilynn said...

Just reading the number 980 makes my blood run cold. How terrifying that must have been for you. I'm so sorry you had to go through that alone. Olivia is very lucky to have you for a mama.

Tiffany said...

Man, this one shot right to the heart. Welcome to the world of alcoholism, abuse and denial in the face of 20,000 lbs of elephant-sized truth. Julia, your story sounds so much like what my mom went through that it chokes me.

I lived fourteen years up close with the effects of the bottomless beer can. And then another two trying to build a bridge in spite of it. When I was sixteen I stopped talking to my paternal progenitor (I liken the word 'father' to an emotional connection he does not deserve). In all the years between my diagnosis and dissociation, he never once even said the word Diabetes, in any of its variations. The two weeks I was in the hospital upon diagnosis, I barely recall him being there with the exception of a few hours the first night. One of my sisters has an active relationship with him and he has never, even once in all these years, made any mention of caring how my disease affects my emotions; my health; my life. He doesn't care, chooses not to see.

And that's fine by me; my mom has always been enough, and no matter how old I get, she always will be.

So, from someone who knows what it is to live as the child of a non-parent:

You're doing a great job. And I'm sure Olivia will thank you - like I thanked my mom - for every sacrifice you made in order to give her the very best life she could have.

LauraJ said...

Sadly another parent left to mother a child with an ex-hole for the child's father. I'm so sorry. I can empathize with you whole heartedly. Although my boy does not have diabetes, he does have extensive special needs and a jerkhole for a father. Kudos to you for keeping it all together for you and your daughter! You've got another fan!