Sweet River Photography

Wish for Awareness

I lost count of the number of conspiratorial conversations I fielded on Halloween night, our first Halloween Since Diabetes.

"So, how is Bella handling not being able to have Halloween candy this year?"

"Uhm..."

"You know, since she has diabetes."

"Well, we didn't have candy last year. We don't really do candy since sugar has always messed with her pretty badly."

"Oh. So then how did she get diabetes?"

Over and over.

I feel the urge to correct them on behalf of all Type 1s and explain that Bella COULD have candy if that was part of our diet. But it wasn't before, so we aren't starting it now just to prove that we can.

That part seems to twist people's brains a little too hard, so I've been leaving it out. But I have a deep need to correct Type 1 misconceptions and it feels so wrong to leave people in their ignorance.

It's not their fault. It's the ridiculous doctors who thought that the insulin diseases should keep the same name even after they realized they were not treated the same. It's the fact that diets DID used to be limited, due to limited insulin technology. It's the fact that Type 2 is now an epidemic and everyone in America knows a Type 2 diabetic. Diabetes is growing at an alarming rate, but of all diabetics, only 5% are Type 1, and only 15% of those are kids. How can we begin to keep up?

The names are similar and do not indicate a significant difference, but the fact is that they are not the same disease and the lifestyles and treatments associated with them are not the same. In the confusion, Bella's diagnosis is extremely misunderstood - in superficial ways like keeping her away from sweet food, and in deeper ways like assuming it's our fault when she is sick or that it's no big deal and she will "grow out of it" now that she is on a diet.

These misunderstandings hurt in small ways and in big ways, when there is no urgency for better treatments or a cure because people do not understand the life threatening reality of the situation.

Diabetes has nothing to do with our diet. Type 1 Diabetics can eat whatever the heck they want, as long as they give themselves the right amount of insulin so their body can process it. No, the process doesn't go as smoothly as it would in someone with a working pancreas, but thanks to fast acting insulin that was invented in the last 15 years, all we have to do is check sugar, count carbs and give insulin. Sure, everyone would benefit from a healthy diet, but there is no diet restriction for Type 1 Diabetics.

There is for us. There already was.

These unrelated restrictions are now heaped onto Bella as people incorrectly put the two pieces of her life together and tell her it's too bad she can't have a treat because she is diabetic.

The hard part is watching Bella absorb the label that our well meaning family and friends incorrectly apply to her, blaming a body part she cannot change no matter how hard she wishes. We ALREADY didn't eat gluten or dairy or many sugary treats. That was already our diet. For years, we have had amazing friends and family who make sure gf goodies are available and leave the candy out of party bags, but make sure there is still something fun inside. That consideration has always made the girls feel included, and was never blamed on them.

Last year we skipped candy because it isn't healthy for our bodies. This year it's assumed it's Because Bella is Diabetic. Last year we didn't share cake at parties because the girls are on a gluten free diet. This year it's assumed Because Bella is Diabetic. It's exasperating to have yet another educational conversation in front of Bella about Her Condition when most of the time she's really just trying to be a normal kid.

She'll learn to stand up for her rights soon, but how strange it must feel to always be talked about, always have misinformed kids and adults telling you you can't do something that you know full well you can. She doesn't deserve to bear the burden of misinformation, and yet she does every day. I have a lot of talks with her about why people say things about her that are untrue, especially when I have to let a misconception slide in front of her, so that hopefully she will grow up knowing how to advocate for herself. Bearing the REAL struggles of diabetes is hard enough without incorrect assumptions from good intentioned people.

So, onward with awareness. If I couldn't have a cure, and couldn't have miracle technology, then my wish would just be that everyone took interest and understood so that Bella would not have a burden of misinformation on top of the disease itself. And the more people understand, the more support we will have for a cure.

Two months later.

er admission

Two months. Two months of life. Two months that would not have been possible 90 years ago, and would have been unlikely even 50 years ago. Two months of our new normal, thanks to ERs, insulin, and very accurate and convenient glucose monitoring.

morning insulin dose

In the two months that we have been part of the the Type 1 Diabetes community, we have heard of several children who did not make it to diagnosis. It looks like the flu. It looks like a hot, sweaty, thirsty summer kid. It looks like not-quite-right.

four days before diagnosis, very thirsty, having to pee and not wanting to walk

In their memory, and in appreciation of Bella's second chance at life, I am sharing the symptoms so that maybe some one will put together the puzzle pieces for another child and save a life.

Extreme thirst
Frequent urination
Sudden vision changes (blurry vision)
Sugar in urine (yeast infections)
Fruity, sweet, or wine-like odor on breath

Increased appetite
Sudden weight loss
Drowsiness, lethargy
Heavy, labored breathing
Stupor, unconsciousness

three days before diagnosis, water by her side and refusing to stand up to play

Bella ended up with every single one of these symptoms. Some kids never have to experience DKA like Bella did, since a few of the early symptoms (chugging water, wetting the bed, blurry vision, yeast infection) are enough to bring a kid to the doctor, and a perceptive doctor knows what to test for. We had an exceptionally warm summer with new activities, and they masked Bella's warning signs.

in the weeks before, she suddenly needed naps

Knowing the symptoms is a start. I knew the symptoms and still didn't see them in my own child. The first day she chugged water, I thought to myself, "Holy cow, she's chugging like she's diabetic," and then I pushed it out of my head as impossible. When someone commented on it weeks later, I said, "yeah, that has me super worried because it is not a healthy symptom." I could have spared her a month of pain if only I had taken her in, but who brings their kid to the doctor for chugging water on a hot summer, and she seemed fine, so I shoved it to the back of my head. All of it. The weight loss, the lethargy, the headaches, the yeast infection, and even the vomiting and labored breathing and sweet breath until the last minute. It takes everything in me and a good long look at my now healthy child to not hate myself for missing her diagnosis.

two days before diagnosis, no energy at all. the following night she started vomiting from severe DKA

And still doctors miss these blatant signs and send kids home. Some kids make it back to the ER, and some do not. Urge your doctors to take a simple sugar test if you have to go in for flu-like symptoms. It takes seconds. It saves lives. Remember the symptoms. Drinking, peeing, weight loss. By the time it gets to vomiting, sweet breath, and coma it is a serious problem that needs immediate ER attention. Diabetes is becoming more and more prevalent, but few people know the warning signs. Knowing these symptoms could save your child's life, or a neighbor's, or someone at school. We were lucky and have a second lease on life. The more people who know, the more lives will be saved.

10 on 10 August

"Nothing changes and nothing changes and then a month is gone and then a year" - me, last month.

Until everything changes.

And that Everything has made this post very hard to write because I can't believe how different life is now. Some things manage to stay the same. But our lives were turned upside down this month, and we are not the same.

Same quiet mornings.

Same quiet hours spent drawing.

And a party that I went to -

that I was in no state to attend

while stressing over my own daughter

and mourning the loss of a friend's.

That I did my best to sit through

(but I didn't manage to take even a phone picture)

and then thankfully had to leave for a shoot.

I can escape in photography.

Unless I'm in a parking lot on I-5.

And then I just sit there.

But it's better than being in a room full of people who don't share your grief.

And I spent the afternoon refilling my heart with these two beautiful souls, whose wedding I have the privilege of capturing in October.

And then this.

This picture hurts me because Bella is cuddling the first tomato of the season.

And she can't eat it yet.

And she is being so so understanding of that and snuggling it instead.

So Lia does the same.

Time for Bella's dinner check.

A few days of needles adds up

and the holes and bruises are small

and dotting her little body

and Bella doesn't complain.

(But I do, I can't help it.)

Still, some things stay the same.

Or improve.

She can run again.

She hasn't run in months.

She didn't run last month.

Or bike.

And we didn't know why.

So there's joy in the simple things.

And my night ends watching the sun set at a cafe with friends

(a gathering occasioned by unbearable grief)

but we are together

and for the moment that is enough

and we find our smiles.

Life goes on as usual this month, but nothing is the same.

10 on 10 July

July! I really do not understand how the days keep slipping out from under my feet. Nothing changes and nothing changes and then a month is gone and then a year. It's nice to have 10 on 10 because change is slow and ever present with kids. You're going along and then all of a sudden you realize that things are nothing like they used to be, though you can't remember them changing.

So I will love waking up snuggled next to this one for as long as I can, in spite of her morning squirming and mosquito bite itching.

Soft, bright summer mornings.

And then we sat around the house all day waiting to sign for a camera in the mail and in all the nothingness, I forgot it was 10-on-10 day. My mom even visited and I didn't take a single picture. Amazing how I can remind myself relentlessly and still forget when I'm in the middle of a project. :O)

The fairy donning her beloved gloves as we waited for the mail truck.

Testing out the camera. These don't count towards the ten, I swear!

Bella playing big sister, realizes she can undo Lia's helmet all herself.

Hopscotch after a painful math lesson. She drew this one all herself and left the numbers out this time.

Quiet time in the kitchen while I cook.

My view while cooking. I love our new white cabinets.

Daddy's home!

And to bed. They always pick him instead of me, and by bedtime I have to agree!

10 on 10 June

10 on 10 for June! Apparently I took and processed all my images and forgot to blog them. :O)

So wonderful waking up to this bouquet fresh from my uncle's garden. Those white peonies are the most fragrant flowers I have ever smelled. I call them the stinky flowers because they are really THAT fragrant. They smell like your great grandma all loaded with perfume.

A shoot for the farm - planting broccoli starts.

Dropping Dave off at work.

And waiting waiting waiting at the doctor.

And more waiting. We waited for an hour, essentially to drop off pee. Hooray. I can say in retrospect that it was worth it, but alas, it was a long morning.

A beautiful day at the lake.

Hungry and waiting miserably for dinner.

Fresh picked strawberries!

And bathtime, at long last.

Sneaky little one reading herself to sleep.

10 on 10 May

On Fridays, I go into Seattle and watch my friend's two kids, so our day is very full! We've done this for a year an a half now and their family is very much a part of our lives.

The biggest change this month is that we have sun(!) and that my baby is now 5 and can ride a two-wheeler. Oh, and Lia made it through the train park without headphones!