Thursday, September 14, 2006

Nine Years

A couple of weeks ago, Sandra Miller wrote a post about her son, Joseph and their fairly unshakeable belief that there will be a cure for diabetes soon. I didn't comment at the time because I just don't share those beliefs.

Nine years ago today, O was diagnosed with type 1 diabetes. The details of that time are horrific and still make me cry, all these years later. For over 8 months, I knew something was wrong. She wasn't talking much. I couldn't get her toilet trained at all. She slept all the time - very unusual for a kid a little over 2 years old.

I kept going to the doctor's with her. They said she probably had some learning delays, so they put her in Early Intervention. They said she probably had an immature bladder and to not push the toilet training too hard. They said she probably just needed more sleep than most kids.

And then she stopped walking. She'd sit on the floor at my feet and beg to be picked up. When we went outside, she'd walk for a few steps and then turn to me, put her arms up in the air and cry to be carried. She cried a lot those last few weeks before she was diagnosed. I cried a lot, too. I cried because she just wasn't herself. I cried because I was terrified. I cried because I looked at my gorgeous little girl and realized that she was nearly see-through. I cried because, at almost three years old, she only weighed 23 pounds.

After weeks of pushing the doctors to do something, ANYthing, to figure out what was wrong with her, someone at the practise finally listened to me. They did a urine test and sent me home, thinking, I'm sure, that I was just another paranoid mother, overreacting. I had no more walked in the door from the appointment than they were on the phone, telling me to get back there immediately.

And so began our lives. A new life of shots and log books and blood sugar tests. A life alien to the one I expected for my child, but still, a life. A life full of soccer and friends and sleepovers and makeup and clothes and crushes on boys. A life lived in spite of diabetes. A life lived TO spite diabetes.

For the first year after her diagnosis, she saw Dr. Craig Alter. He's a fantastic endocrinologist who has since gone on to head pediatric endocrinology at Children's Hospital of Philadelphia. At the time, he told me that he firmly believed that there would be a cure within 5 years. We've almost doubled that time span and there is still no cure. When those five years had passed and there was no talk of a cure, I was furious. Furious that there was no cure but even more furious that the doctors had gotten my hopes up.

That, to me, is the cruelest thing. Why would you tell someone that you think there will be a cure for this disease when you don't know? Why would you get a parent's hopes up, only to have them dashed again and again? Why would you tell a CHILD that you believe that there will be a cure in X number of years? It's inexcusable.

I'm not saying that there shouldn't be a hope for a cure - of course there should be. But there shouldn't be a timeline. Sooner is better, but saying it will definitely happen in five, ten, fifteen years is unbelievably cruel.

This is why I've never talked of when there will be a cure with O. We keep up to date on the latest research and we talk about what it will mean for her and other people with diabetes. We talk about all the famous people who have diabetes - at camp this year, she met Will Cross, the man with type 1 who climbed Mt. Everest and she thought he was just about the coolest guy ever. She cheered on Jason Johnson, a pitcher (briefly) for the Red Sox, who has type 1. She's a big fan of Gary Hall, Jr., the Olympic swimmer. I want her to see what she can do, in spite of her diabetes. I want her to see how far she can go, how she doesn't have to let this disease shape her life.

But I will not hold out false hope for a cure. I don't want to do that to my daughter.

24 comments:

Minnesota Nice said...

Oh my Julia. What can I say? - except that you are a wonderful mother and I love that picture of O.

Beanie Baby said...

Yes.

The lie is enormous. Doctors have been telling type 1s that we're five years from a cure for, what now? Thirty years?

I too am still angry at those doctors.

And that is a beautiful picture.

Oh, The Joys said...

She is gorgeous! What a beauty. Must take after her mom, right?

LauraJ said...

She's beautiful!
I think the best gift we can give our kids is honesty.
You're a beautiful mother for being honest with O. and so much more!

Joke said...

My cousin S. has had Type 1 since before I was born. Nobody's counting on a cure, but we're hoping for it.

Life is to be lived and yes, there's always room for hope, but the hope of the future shouldn't start to crumble the reality of the moment.

-J.

nicolep said...

Julia - First of all - O is absolutely beautiful - and that is a wonderful photo.

I stopped believing in a cure a long while ago. Of course, that doesn't mean I don't hope - in the deepest deep downs of my heart - that someday they'll prove me wrong and find one.

I hope O though, lives as full, vibrant, fun, and amazing life as I have - with this disease (or without it). Just last night, I was talking about diabetes with an associate of mine and trying to explain how diabetes is just a miniscule little fiber in this huge blanket of a life that I lead. It's challenging to communicate how difficult it is - but at the same time, how it seems to knit in... You know?

Anyway. I loved this post because it's honest and has edges. I like edges.

Kerri. said...

I agree with you whole heartedly on whether or not to tell a child there is a cure on the horizon. I've waited four times over for that "cure in five years." And on the anniversary of my diagnosis every year, it confirms that I'm still not cured.

But I am still here.

O is an inspiration. And so are you. The fact that you guys can speak openly about diabetes reminds me so much of my mother and I that it's uncanny. We fought about everything from bloodsugars to boys growing up, and today she is my best friend.

You two are really inspirational. And she is a truly beautiful girl. It's obvious that she takes after her mom.

art-sweet said...

God damnit, blogger ate my comment.

She's lovely. You're lovely. And a great mom.

And you know I'd bend over backwards for her if she ever wants to talk to a grownup PWD who has had fun experiences like insulin reactions on a first date and during your SATS....

Lyrehca said...

Amen, Sister. Great photo.

And I second Art-Sweet's offer to chat with O. if she wants to talk to someone like her, just 20 years more vintage.

And thanks for the offer on my blog about clothes; I'm going to email you very soon.

bubandpie said...

What a riveting post this was. I can't imagine watching my child struggle with illness and having the doctors refuse to take me seriously.

bethany said...

I love O... please tell her I said hi and I miss her. I'll be sending you and email soon. I have something I need to mail her but I lost your addy. <3

Sandra Miller said...

Stunning photo-- O is just gorgeous.

Julia, this was a powerful piece-- thought-provoking and inspirational.

You see, I've been thinking a great deal about this issue ever since posting the entry you reference here-- it's the main reason I've been a bit MIA in the blogosphere lately.

You see, we're only two years into this.

Two. Years.

Just think back to when that endo told you a cure would come in five years. Yes, you were furious by the end of those five years. But during, I wonder if you clung to that promise as tightly as I have these past two.

But of late, I'm finding my grip on this idea -- this belief -- considerably loosened.

One reason I've held on so tight is because memories of my pre-diabetic son are still so fresh.

It's just so damn hard to let go of him.

Even though deep down (for his sake as well as mine), I know I have to.

Jamie said...

This same arguement goes through my head. Like Sandra, we're still quite "fresh" into the diagnoses of this disease. Danielle is too little to ask me about Diabetes and why she has it - but that day will come, and with it, will come the question "Will there be a cure??" What do I say?

I do have hope, and I do believe that there will be a cure one day - in fact, one day in my childs life - but it could be next month, next year, 10 years from now, or when she's 80 and has lived with it for 78 1/2 of those years.

I do plan on telling her that I have hope for a cure - but no time line - just that it will happen some day.

Our endo and Diabetes clinic never told us that it would happen soon - they never gave us a timeline. In fact, they never talked about it AT ALL. I'm sure they get asked all the time, but really, they are there to help us deal with the day to day of this disease - to keep our child as healthy as possible given what we've been handed. I'm actually glad they never gave us a timeline.

But, there's always hope - and that is something we will always have.

Allison said...

I think the reason doctors give us a date is because they don't want to tell us "I don't know." Doctors are supposed to have all the answers, and I have a sneaking suspicion many of them feel guilty for not being able to give us a definite answer, so they just make one up, hoping that maybe, by luck, they will be right.

I've quit believe in a date for a cure. I know it's often talked about, and I wrote a nice long essay about this on my own blog a few weeks ago. But really, all I need to know is that there will be a cure. I want diabetes to go away. If it's for me, great. If it's not for me, that's still great.

If she asks, "will there be a cure?" just say "yes." If she asks "when?" just smile, and keep on smiling.

Mrs. Chicky said...

What a moving post. I was glued to my computer screen. The two of you must have gone through so much in those first years, and I'm sure it continues. But it seems like you have the right attitude, fight until there's nothing more to fight.

And your daughter? She's gorgeous!

Rachel said...

honesty, yeah. the best policy, yeah.

Maybe because my FIL is a retired surgeon and MIL a retired nurse...who both knew the main endo in town very well...maybe that's why they never set G up for the false hope and were always honest. Or maybe just part of their nature. Or both.

Sarahtoo said...

You rock. This post was awesome--I can't imagine what you (and O) went through back then. I've told you before that you're an amazing mom. I just have to say it again. You are amazing. O and the others are lucky to have you--as lucky as you feel to have them.

She's gorgeous, just like you are.

Angela said...

Beautiful picture.

I really have nothing to add, except that I think you both are awesome.

terrilynn said...

Your girl is beautiful (just like her mama).

Liam and I talk about a cure often, and he'll say things like "when there's a cure I'm going to SMASH THIS METER!" He's seven; he has no memory of his life before diabetes. He fully believes, and I will not take that belief from him.

Me? I have hope, but little faith, little belief. His keeps us going for now.

Shannon said...

Ditto what Jamie said.....

And to that end, O is beautiful!! Gorgeous face, gorgeous hair. I'm so sorry she couldn't make it to Boston when we all met.

One day in the Spring again.....

Penny said...

She's gorgeous, Julia.

This post had me crying (as most diagnosis stories and anniversaries of D do). I totally agree with putting a timeline on a cure. I really believe there will be a cure one day, but I don't think it will be any time soon.

I love Riley's endo. At the last appointment she asked if we had any questions and before I could say anything she said, "If you're asking about a cure, yes, there will be one, but no I don't know when." I think that's a good answer to keep hope alive, but to not get your hopes up too much.

By the way, I love the line you used: "To spite diabetes",

julia said...

Sandra and the others that are relatively new: I really tried to remember if I believed the doctor when he told me he thought there would be a cure. I think I did, for a little while, but after talking to a lot of other people with D and hearing that they'd heard the same thing, I stopped believing.

I also think that because I had such a hard time getting O diagnosed, I lost a ton of faith that I used to have in the medical profession. I'm not a very trusting person anyway but going thru such a protracted struggle to get a diagnosis made me really mistrust just about anything they said to me.

So, no, I don't think I did cling to that hope for a cure, at least not for very long. I don't think I'm forgetting how I felt, although it's entirely possible - things were so chaotic at the time. Not even a year after her diagnosis, her father and I separated and later divorced. That much emotional turmoil in a 12 month period really threw me for a loop - I may have blocked out how I felt.

I hope I didn't give the impression that I thought anyone was foolish for hoping because I definitely wasn't. I do hope that there will be a cure. I don't expect one, though. Maybe it's defeatist of me, but it's the way I operate - expect the worst and if the best happens, well, wheyhey! I don't see the glass as half full or half empty, I'm just glad there's a glass.

Emily said...

I really like the way you think.

Lovely picture, what a beauty.

Scott K. Johnson said...

That picture speaks volumes. You two are awesome.

I often wonder what is the deal with the whole 5 year thing? Has anyone ever heard anything different than "5 years"? Why did "they" pick 5 years?