Thursday, November 20, 2014

12 and 5.9

Endo visit and we get the big examination room in the corner. Windows all around on the 2nd floor. It feels like a fishbowl. Win for us! Grace starts to dance around the room, showing off what she's learned in dance class. Teaching me to do 'The Pelican' which involves kicking one leg up, all while throwing your hands behind you. I realize I am not good at The Pelican. Grace is though, and we laugh.

Give us the big room in the corner, and we are gonna dance, baby.

Her blood draw is good. Her triglycerides are great. Her celiac is negative. Looking good. She's grown an inch in three months. Her endo marvels at the hint of mascara she wears, asks if she's dating anyone and Grace dutifully rolls her eyes. Six years after we started this business, and who knew I would be in this room when I actually laughed about it all.

I was in this fishbowl room six years ago, with a newly diagnosed six year old. I was scared and I felt alone and I felt I could not do it. I did not even think of, or envision, a moment like this in my life. Six years from now? I didn't know if I would make it the next six days, let alone six years.

Funny how a room can bring it all flooding back.
Grace mentions it to me.

'Mom, the last time we were in this room, I was little. I remember the windows and how big the room was. And we talked about food.'

'Correct you are, my gal. We did. We talked a lot about food back then.'

And then it's over. Her remembrance of it all is that of a six year old. The food, she recalls we talked about food. I guess that's good. She doesn't say I looked scared back then. She doesn't say, 'and Daddy was with us, you remember Mom, and he looked so very sad.' She doesn't talk about how she used to scream and scream and scream when we gave her shots. Remembering some things when you six is selective. I thank God for small miracles. She remembers the food.

The nurse peeks her head in and says '5.9.' I must have looked shocked, cause she says after it. 'Really, 5.9.'

Grace looks at me. I smile. She says 'Is that good?' and she smiles. We've never gotten below a 6.0 A1C yet. 6.2, yes, Mostly we hover in the 6.4 area. I'm fine with that. I wasn't even trying for tighter control and finer tuning, yet here we are. 5.9

I tell her endo when she enters that the machine must be broken. She asks me how I do it. She tells tales of teens with 9.5, 10, 11 A1Cs and she looks worried. I tell her I spend time fine tuning, I don't let highs hang out and mostly, and here is my key, I attack night time with a vengeance.  I have the least variables at night. I can control more. I tighten the reins then. It's a huge part of her 24 hours, those 8-9-10 hours she sleeps. I try to always be in range then. Then I tell her once again her A1C machine is broken and it can't possibly be right.

I scroll through her PDM. 40% of the time we are in range (80-150), 40% of the time we are high (above 150) and 20% of the time we are low (below 80). I think, well, it's good, the 20% of the time low. And I wonder what Grace's standard deviation is. Aw hell, I'm not gonna look that up, it is what it is.

That's all I got, I say. I impart no wisdom beyond that. Her endo looks at me, 'that's it?'
'Yep, that's it. I'm afraid I haven't anything else to add.'

'You know what? I do have something else to add. This is a great room for dancing.'
And we ask her to join in.

Tuesday, November 4, 2014

Candy Exchange Meetup

Every year our local hospital, the one where Grace was diagnosed six years ago, has a Diabetes Candy Exchange. They want us to give our precious candy over to them, in exchange for other goodies. Breaks my heart to see all that beautiful candy being given away.

What I don't understand is how on God's green earth, these Type 1's give away Smarties and Nerds. People. People. People. They are among the best candy to bring up a low. They are pure sugar and they work fast. Yet I see them thrown in there among the Laffy Taffy (pull out all your teeth candy) and the unwanted Baby Ruths (no one likes those). Sad.

Many years I stick my hand right into the cans where kids are depositing the giveaway candy, and sort through it, pulling out handfuls of Smarties and Nerds. It's like Dumpster Diving for Diabetics. Sure, everyone looks at me, but I got over that about ten years ago. Look away people if you don't want to see me getting the best candy. Look away.

Alas, this year I did not Dive. The darn cans were too close to the nurses sitting at the registration table! It was even too close for me. Plus I was gonna SO embarrass Grace if I did anything like that. Like that has ever stopped me before, right? I didn't even Dive, everyone should be so proud of me. I know there were Smarties and Nerds in those cans, I just know it.

They have food, with the carb counts on them, bless their little hearts. They have gluten free food - bless them even more! No drinks though other than water. I'm not sure they believe even in Crystal Light. They also have random food on the table - a big bowl of unwrapped cheese sticks. OK, then.

The best part of the exchange is hanging with friends. When Grace was little, it was all about the activities -the arts and crafts, the face painting, the pumpkin carving, but now it's all about who she gets to see and hang with. Luckily this year, her BFF from camp could come. She's only 1 year into the D, and lives 5 minutes from our house, and we met her at camp this year, how crazy wonderful is that???

Another camp friend, the illustrious same-name Grace came too. They made a trio of blue. They communed, they chatted, they made arts and crafts together. They wore their Walk shirts, Grace even matched with her blue sweatshirt! and had their faces painted the same. They hung out.

That's the beauty of the candy exchange  - it's really disguised as a get-together for the young T1s. And a way for me to increase my candy stash for lows. That will have to wait for next year.

Oh, Else sang karaoke and Olaf came. He was delightful. His head didn't come off though. Don't ask me how I know.

Sunday, October 26, 2014

JDRF Walk 2014

Our annual JDRF Walk was today. A beautiful, bright, sunny day that couldn't have been more perfect. The mood was lighter this year. I felt it. People felt hopeful. There are so many things in the works for people with Type 1: the bionic pancreas trials, Nightscout, Dexcom Share. It's the age of invention and innovation. Technology beginning to make our kids lives better. It's the most hope we have had in a very long time.

The Walk brings about so many feelings, six years into diabetes. The newness has worn off. The daily grind has set in. Puberty has set in, and she's growing up. I am weary at times. And so is she. I look up at the sun and it feels so warm, but the wind whips my face. How fitting. The community I am in, standing among 10,000 walkers, warms me to no end. The daily grind is my wind.

She is thrilled that her BFF from diabetes camp, who lives no less than five minutes from our house at home, is here at the Walk. They hug and they tell each other they love each other. And part of me is so happy for her, to have someone she loves, with diabetes, so close to her. And I think at the same time, damn it, yet another kid. It's the yin and the yang of diabetes. Am I glad she's had it because it makes her who she is? And in the next breath I curse the very day she got it.

And we walk. We walk down the road by the river in my city. It's glorious, the sight of all these families, all these kids, supporting each other. The t-shirt slogans are funny, truthful, and make me smile. We find humor in this damn situation. There isn't one family I see during this walk having pity on their kids. They all say 'Look around you, there's a kid with diabetes just like you. Look, another one. Look, she's older and she's here. Look at her pump. Rock that Dex!' And isn't that something? In the midst of all the life altering it brings, we come together and say it's alright, cause we have each other. It fills the gas tank to go another 1,000 miles.

As we end the walk, the JDRF leaders and volunteers all ring cowbells. And we cheer as we come across the finish line. We made it, one more year.

JDRF Walk 2011
JDRF Walk 2010

Wednesday, July 30, 2014

Insulin Addict

This is Grace's 'handle' on a game app she plays. Insulin Addict.
I laughed, cause she is.

And oh, this addict uses A LOT of insulin throughout her day. She's up to about 50 units per day. She's maxed out the 150 units that I use to fill her OmniPod pod, so now I up it to about 175 units for three days.

It is what it is.
It's puberty, that is.
12 going on the preteen years.
Growth spurts, hormones, growth spurts, hormones and did I mention, the GROWTH spurts?!
Like, growing 2 inches this past year and on track to bust another inch in the next six months.
All that growing requires a lot of insulin. Both in basal and in bolus amounts.

Carb ratios that have gone from a breakfast of 1:15 to currently 1:8. Lunches are now 1:10 and dinners have just been reduced to 1:12.

It's the basal rates that make me shake as I enter them. I repeat the phrase 'She needs what she needs, these are only numbers' again and again in my head, but secretly, there is a little voice that whispers, My God, woman, that's a HECK of a lot of insulin per hour.'

I try not to listen to that little voice.

I enter new basal rates. Large ones for such a little girl.
And I know it's what she needs. And it's just a number.

Here's our current basal rates:

12a - 3a   1.35 U/hr
3a - 6a   .85 U/hr
6a - 6p   .90 U/hr
6p - 8p   1.00 U/hr
8p - 10p  1.05 U/hr
10p - 12a  1.20 U/hr

Does 12a - 3a freak you out? Well it does me.
And I still think it could be tweaked to 1.40 U/hr or even, GASP, 1.45 U/hr.

Insulin Addict.
Damn straight.

Tuesday, July 22, 2014

D Camp - Year 5

It's that time of year again - diabetes camp! And we are in year 5, baby.
You can read about Year One, Year Two, Year Three and Year Four. All of them were grand.

This year's camp moved to a different location. It's all good. Grace had to get used to a new cabin, new counselors, new cabinmates, new dining hall, new well just about everything. But one thing remained - her friends. So, move the camp all around - the friends are what holds you to the place.

It was reuniting with her DBFF (Diabetic Best Friend Forever) the indomitable Lily. Hugging and running and hugging and giggling and laughing and whispering and catching up. Just like they never left each other's side. It is grand to behold, the traditions these two have. They eye roll together, they smile at the same things, they chuckle and get the inside joke together, they snark together.

In all, it's wondrous.

And this year, five years into it, I leave her and I tell her to have a blast. I don't worry that she won't be taken care of, those waters are under the bridge. I know she will have fun. I know she feel a part of a community that I don't belong to. I say goodbye and give her kisses and tell her I will miss her sweet face.

I don't remind her to check her BG.
I don't tell her to text me or call me if she has a problem.
I don't tell her to ask an adult for help if she needs it.
I don't tell her to remember her snack in her bag.
I don't say those things because I don't have to.

It's a relief not to say them. It's a relief to not worry.
But I don't want her to think that's all I do all the time with her, worry. Because I don't. It's just that I never get SIX WHOLE DAYS of it. In a row. And that's different.

She sees it on my face, my intuitive girl. She tells me on the way back to the car, after we have made her bed in her cabin and gotten her squared away, 'Have fun Mom. Sleep.'

I smile, because I will.

Have fun at camp, sweetie.
Sleep, eat, play, swim, zipline, commune.

Tuesday, July 15, 2014

Happy 12th Grace!

Twelve years old. And you know that all I can think of is back to when she was diagnosed at age 6. When I sat there in the hospital room, wishing her to be better and to be well, I thought of this day, when she would turn 12.

I thought, 'When she's 12, she will have had diabetes for half her life.'
Half her life.

That's where we sit right now, splitting the hair between the time she hasn't had diabetes and the time she has. And it turns. And it won't turn back. She will never in her life have less time having diabetes than she is alive. Maybe it shouldn't bother me so. Maybe it's just a milestone I need to work through. Maybe it means something. Maybe it's all just a wash.

It is her birthday, the day we celebrate her very being. 12. On the cusp of being a teen. Taller. Smarter. Glass-ier. More thoughtful. More able. Independent.

She is all of those things and more. She's OK with her diabetes. She hates her diabetes. She thinks it's lucky she has it, because if she wouldn't have had it, how would she have ever met Lily? She thinks it's the worst thing in the world, and curses the very day she was diagnosed. Yeah, she's 12.

She's awesome. She rocks. She's got a sense of humor that will bring you to your knees. (Good girl, it will carry you far, being able to laugh at yourself, your situation and what happens around you.) She loves books and bikes, dances and swimming, hairstyles, makeup and glitter.

She is the glitter, I want to tell her.

Happy 12th Birthday, Grace.
Rock on.

Sunday, May 25, 2014


I drive her to Rehobeth Beach for an invited all-girls Memorial Day weekend at her friend's beach house. It's her and two other girls from school. She's been looking forward to it for weeks. She has a sleepover the night before, and the next day, I drive her two hours to get there. The girls she's with for the weekend meet her in the development on a golf cart, waiting for her in their bathing suits. I see her smile broaden when she sees them. She's just like me at her age, wanting freedom, with her friends. My eyes tear up as I drop her off. It's good though.

She's packed everything she needs, changed her Pod, and has extra everything. We throw in the ketone meter 'just in case' as she says. I don't know how lucky we will be that we have, until later.

She jumps out of the car when we arrive, leaving behind her D kit that has her extra supplies and snacks in it, and her coat. We retrieve them later and laugh about it. My girl, so anxious to get on with it all. She dumps her stuff and quickly enters the bathroom to change into her bathing suit. The pool is open in the development - the first day of it - and they are all eager to christen it. She enters back into the bedroom and I quickly follow, asking for a real BG - a testing one, not the Dex one. She tests and is 81. I talk about how that's a little low to go swimming with, and she should eat a granola bar she has. She scarfs one down, nodding.

I give her a kiss and a hug. The girls all drive the golf cart, with Dad on it now too, and lead me out to the road. I roll down the window and tell her to throw a decreased temp basal in there for swimming. She semi rolls her eyes, but then she smiles. She knows I cannot help it.

I check in with her after swimming, as they are headed to the rides at the beach. She send me a picture of going into the Haunted Mansion. She looks good, smiling and excited.

Later on that night and early morning, the shit hits the fan. Hard.

It's bedtime, about 11 PM. The following texts happen:

Text me night time BG. Tell me Dex.
I'm 312. That's WEIRD. I dosed 3.5u.
OK honey put in +40% for 1.5 hours. Tell me arrow on Dex.
Straight east.
Recheck in half hour. Text you then.

What's Dex say?
331. Dosed 1.00 Dex east 315.
OK. Try and get some sleep. Please get some water. Text or call if you need me.

She sleeps for about 4 hours. Then I get a text at 5:30 AM:

My stomach feels even worse than it did last night. I feel like I have to throw up.
Hi honey. What's your BG?
Hold on I'll test...... I'm 439 ugh I feel horrible. Should I dose 5.65u?

I need you to give yourself 2u via syringe. Get it out. Go to the bathroom.
Do you want to go somewhere and FaceTime me?

We FaceTime and Grace is in the bathroom, crying. Big, sloppy wet tears of pain. Her stomach is hurting her. She says it feels like torture. The others in the house are not up yet and it's just her, me and her Dad. I go downstairs to the living room as to not wake her sisters. I make her look at me in the FaceTime picture and I tell her what she has to do. She has to listen to me and do it now.

You are to get the needle out and find the two small lines on it and you give yourself 2 units, right now, do you hear me? You will feel better when you give your body insulin. After that, I want you to feel your pump. Does it feel like the cannula is in?

She gets the needle out. She measures 2u. She injects it, in her arm.

Mom, the cannula is out, I haven't been getting insulin. Look.

And I see the error. The cannula is not in. And I know the plan now.

You are to get that Pod off. Disable it and get it off, but not until we get a new Pod on you. So, get a new Pod out and start filling it and priming it. Where do you want it - on your tummy?

Mom, there's no SkinTac in the kit.

Crap. Just use the SkinPrep, you will be fine.

Grace primes the pump and I hear it click. She puts the SkinPrep on and plops the Pod into place. I always give it a 'love tap' for good luck. I do that through FaceTime, lifting my hand and patting the screen. It's the only time Grace smiles. She knows our routine. I won't give it up. The Pod thumps into place.

Now put in +70% for one hour temp basal. And dose yourself 5.00 units.

Grace doesn't hesitate, and through tears, puts the numbers in and presses 'confirm.'

What faith my child must have in me, to dose that amount over a FaceTime call, knowing it would be what she needs. I'm fearless and scared to death all at the same time, but all she sees is fearless.

Now we are gonna check ketones honey. Get your kit from your bag.

She does and puts the strip in and waits for the countdown. 1.6 ketones. I try not to look scared, but the highest ketones she has ever read in 5 years of having diabetes has been 1.1. She knows it too, because she starts to weep. She tells me again and again she thinks she will throw up and her stomach hurts like someone is stabbing her.

I 'shhhhhhh' and I smile and I tell her to lay down with me on the bathroom floor. I tell her to look at me, I have it all under control, I will get her down, it will all be OK, we have a plan and we are executing it. We know what to do.

And I think -  how fast can I drive to the beach? If I send an ambulance, where would they take her? Who should I call to help me? And I think too that I've got to help myself. We will wait for it to come down. We will stay on the line and look at each other and give it it's time to work. Work, damn it. Work. Now. Faster. Men on the moon in the 1960's and I have to wait 15-20-25 minutes for insulin to start working in the body? Damn it.

She moves to the living room and the couch and no one is up yet. I ask her to wake the Dad, but she says no. Even in pain, my independent soul of a daughter doesn't want to ask for help. That's a blessing and a curse.

We go through the next two hours on FaceTime, checking, rechecking, ketone-ing, drinking water, raiding the cabinets for crackers to make her tummy feel better. And we lay together and she cries. I do not. I don't think I can start and then stop, and then where would we be.

The BG starts to drop, but by 10-15 points at a time. I ask her what she would like to do - stay there or come home? She thinks about it and my earnest little girl, the one without a dishonest bone in her body, who tells me the truth about her life again and again, tells me she wants to come home. It's been two hours, almost three, of agony. She is hurting from head to toe. She knows what she is made of. And she knows when to call it a day.

In five minutes upon hearing it, my husband is dressed and out the door to go pick her up. I will stay at home on FaceTime with her until she feels it's OK to go, and then she will wait for him to come. We lay down and we talk, we start to smile, we hold our hands up to the screen together.

In five hours, she is back home. I hug her when she comes, saying how much I missed her, saying it was good to see her this morning on FaceTime. I ask about her tummy, her head, her BG. She looks up at me.

I'm glad I came home.

Me too, sweetie, me too.

Friday, May 16, 2014

D-Blog Week - Diabetes Life Hacks

It's the 5th Annual Diabetes Blog Week! Thanks to Karen over at Bitter Sweet Diabetes for the topics and agenda for the week. Head over there and see all the other postings from great diabetes bloggers from all walks of life. Go. Now. I'll wait.

Day #5
Diabetes Life Hacks

The things that make life with diabetes easier, huh?! OK, here goes...

The D Kit
A girl's gotta have a D kit, right? Something sparkly and glittery and well, girly. That holds everything. And here it is:

They come in all colors and designs. Available at Target.

Flexifix tape for the Dexcom sensor

You need to keep a sensor on past 7 days? Shhh - who does that? That's a secret. This stuff works. It keeps the sensor on and it's lightweight and clear. Costs a bundle, but if you cut it right, one roll lasts a very long time.

Dexcom receiver holder

Yes, there are cute holders from Tallygear. But I MacGyvered one out of a Vera Bradley ID case. Simply cut the middle section out of it and the Dexcom fits perfectly inside. Clear window to view and all. And such cute designs. Thanks, Vera!

Available through Vera Bradley and Hallmark stores too.

Hope they help make life a little easier with the D!

Thursday, May 15, 2014

D-Blog Week - Mantras

It's the 5th Annual Diabetes Blog Week! Thanks to Karen over at Bitter Sweet Diabetes for the topics and agenda for the week. Head over there and see all the other postings from great diabetes bloggers from all walks of life. Go. Now. I'll wait.

Yesterday I wrote about how diabetes can bring me down. Today's post was supposed to center on what gets me through a hard day.

Day #4

All will be well / She's still a kid / Sure we can / Always something to learn
and Let her go

All will be well
No matter what happens with diabetes, I know one thing, it will all be well. It will all be what it is supposed to be. Do I mean accept the possibility that things will not end well? Yes, I suppose I mean that too. The high BG, it will all be well in time. The low BG, it will all be well in time. If we end up in the hospital, the people there will help us get better and it will all be well. If we screw up, in the end, we will make it well. It is more about my soul's acceptance of dealing with the 'now' than it is of accepting fate. 

She's still a kid
She wants to play with her friends, and say yes when someone asks her to sleepover on a whim. She wants to go to the mall alone with her friend, while mom waits down in the food court. She just wants to be an 11 year old girl. If I remember this about her, that she is just a child trying to move through her life, the diabetes can take a backseat. I try to think of her childhood first. What do I want her to remember about this childhood and this life? That she was loved and had a grand time, doing what she liked to do. 

Sure we can
Camp with her 5th grade class to an outdoor school, with cabins and no indoor plumbing? Sure we can. Swim all day in the ocean and then want to go back for more at night? Sure we can. Eat five pancakes for breakfast cause they look sooooo good in the restaurant. Sure we can, we will SWAG the heck out of that. If I keep my mantra to how she CAN do it, instead of creating elaborate, complex and bewildering plans, I have taught my child how to be a person with diabetes who figures out how they can do what they want to do in life. I want her to say 'Sure I can' as a PWD without nary a backward glance.

Always something to learn
If there is something I know about diabetes that I can impart to others, it would be, learn all that you can, and when you think you have learned it all, sit down, grab a book that you haven't read about diabetes before, and start reading. I have learned so much from people like Gary Scheiner, and others with Type 1. They have SO much to teach others about living a full life. About how to correctly bolus for foods. About adjusting basals. About carb counting. And I have tried in these past five plus years to learn as much as I can, as fast as I can. I learn so I can teach Grace, so she will know how to care for herself. Learn it, D-Mamas and D-Papas, so you can teach your kids.

Let her go
(Don't you dare start singing the Frozen song. Stop it. Right now.) She's 11, but it started at about age 9. I have to let her go. I have to let her go and do and care for herself without being tethered to me. Thus the learning (see above). When she knows how to do what she needs to do, she doesn't need me. And I can let her go. 

I don't need to know every BG at lunch time when she is at school. She cares for herself in school. I routinely check that she is doing it, as it's an expectation in our house that she care for herself. And she does. And we hug and we laugh and we celebrate. I don't need a phone call every day from the school nurse, or to help her figure out the pizza dose. She lets me know later - 'Mom, I dosed 35g for that slice of pizza as it was big, and I did a 80/20 split for 3 hours.' I smile, cause that's what I would have done too.

This is how I know to stop controlling. I think 'Can she do it?' If the answer is yes to that question, then my response is 'Then let her go.' Release. She can do this. I have faith. And you can too. 

Wednesday, May 14, 2014

D-Blog Week - What brings me down

It's the 5th Annual Diabetes Blog Week! Thanks to Karen over at Bitter Sweet Diabetes for the topics and agenda for the week. Head over there and see all the other postings from great diabetes bloggers from all walks of life. Go. Now. I'll wait.

Day #3
What Brings Me Down

What it does to my soul

The diabetes care is 24/7/365 x ad infinitum. At least it feels that way, to me. There are times when it flows, and there are no bumps or problems or things to figure out. Then all of a sudden there is, like a wave that comes to the shore and crashes, pulling me under for a while. I know how to swim and I know how to hold my breath. Thank goodness.

And right away, as I write all of this, the guilt floods over me for writing it and thinking it and feeling it. She's not to blame for having this, but the mere having of it is wrought with emotional side effects and landmines.  It's not MY diabetes, it's hers. I have no right to say how it makes me feel, I am not the one living with it. But I do, by default, don't I. 

I'm the CEO of the diabetes for now. And it's one hell of a job, one I would not wish on anyone I cared about. Gosh how that sounds harsh when I write it. I have a hellish job caring for my daughter's diabetes.

Jesus, no. NO.
That's not what I want to say to everyone, it's not who I am. 

The caring and loving I can do with my eyes closed. Oh how I love this child of mine.
My love is chronic.

The endless numbers and doses and doctors and specialists and devices and counting and measuring and calculating and adjusting and lows and highs, it's sometimes too much. I'm feeling bad about writing that it's a crappy job. For those of you who feel the same sometimes, there it is. We can now celebrate the crappiness that is diabetes in a young child.

The first two or three years, it glides, the care. I found myself easily awakened, heightened to the lows and the highs. Asleep at 10 PM, up at 12 AM, awake at 2 AM, then 4 AM, then up for the day at 5:30 AM. No problem. Roll with it. 

Now do that for five-plus years. It takes it's toll, physically and mentally and emotionally. Ask any D-Mama or D-Papa when was the last time they slept for more than one day straight and I'll bet the answer is something like 'Diabetes camp week.' It rolls around once a year, for 5-6 days. Imagine not sleeping well but for 5-6 days of the year. Yeah.

Sleep is the escape to rest body and mind, and diabetes doesn't ever let her or I escape. I get to escape for 5-6 days when diabetes camp comes,  and she still has to deal with it. When I do dream at night, it's sometimes about diabetes. Isn't that just the icing on the damn cake.

My dreams don't let it go either.

The chronic does things to your soul. It messes and it sits there and it just well, sticks. Sticks to it all. It's something else, not of this world, to worry whether your child wakes up in the morning. Every morning. There isn't one of us in this D-parent world who hasn't thought it or almost lived it.

What if I walk in there and we have missed a low BG? What if this is the morning I slept through the alarms, I miscalculated the dose of insulin, her body decided it had had enough? Imagine the coma and the seizure sitting on the bed, waiting to take. You tell me that isn't a bunch of soul-changing thoughts I just wrote, right there.

And it takes something, from your soul, this disease. It takes something from your child - the carefreeness of childhood, the innocence of not being chronically everything - and it doesn't give it back. I would give my own soul on a platter of gold for her not to have diabetes, but it is what it is. And accepting the 'is' is hard. Constantly hard. For her and me. 

Ever have your child hate something they have so much they wish they would not live? I have and it tears my heart in a way that is un-mendable.

Has it made her stronger? What a useless question at times.

We are strong when we are called on to be strong and she has been called again and again and again. Enough. She's strong.
Diabetes asks kids to prove it, over and over and over. 

I wonder how strong and resilient I would be without diabetes in our lives and I think, you know what? 

I really don't care. I already was resilient and strong. 

What is my lesson in all this? What is the lesson? 

Maybe the lesson is to accept, to wade through, to love all that it is, and get on with it.

Tuesday, May 13, 2014

D-Blog Week - Poetry Tuesday

It's the 5th Annual Diabetes Blog Week! Thanks to Karen over at Bitter Sweet Diabetes for the topics and agenda for the week. Head over there and see all the other postings from great diabetes bloggers from all walks of life. Go. Now. I'll wait.

So, I am by no means a poet, but I tried. Here goes, our nights on some nights.

Day #2
Poetry Tuesday

Ballad of the Night

my feet
automatically on their own
out of my bed
three steps
turn right
out the door
right again
into hers
five steps to her bed

47 bg
five steps back

south arrows
willing them to
turn east i say
turn east

and waiting
and waiting

east they say

when i am not here
who will
it's five steps
to her bed

Monday, May 12, 2014

D-Blog Week - 'Change the World'

It's the 5th Annual Diabetes Blog Week! Thanks to Karen over at Bitter Sweet Diabetes for the topics and agenda for the week. Head over there and see all the other postings from great diabetes bloggers from all walks of life. Go. Now. I'll wait.

Day #1
Giving Us What We Need

I fight for almost all of what Grace needs to be kept alive. Who do I fight? Her insurance company. They have one set of things that they think will keep her alive, but frankly, it would be just barely alive. I have another set of things that will allow her to choose to live a full, rich, long life. I choose option B, my set of things. Door #2, please.

Imagine a world in which is D Mamas and Papas didn't have to fight so hard to get what our Type 1 kids need. I would have:
- more time on my hands
- more energy to do things I like to do
- more energy makes me happier
- happier me means happier kids
- more money and less out of pocket costs

I like that list. A lot. It's not something I have though. I spend hours, which eventually add up to days, on the phone with insurance companies. Getting pre-authorizations. Fighting paperwork mix-ups. Arguing over co-pays I should not be paying. Getting new transmitters and receivers. Calling about Pods that have screeched and squealed and occluded. OMG the phone and the emails. Oh and the paper, there's lots and lots and lots of paper.

The latest is calling insurance companies to ask for one more vial a month of Novolog, pretty please. I have a growing girl in the throws of puberty and we are maxing out our two vials month. Grace's endo has written the script calling for three vials a month. The insurance company says two is all they will give her. Period. Every single month I have to get a pre-authorization for another stinking vial of the liquid gold. EVERY. SINGLE. MONTH. It gets old, real fast.

I would love to somehow advocate and press for changes to how we care for Type 1 kids in the medical system. The way it is now, it's random from company to company and from state to state. God help the person who has their child on Medicaid (that would be us!) Some cover CGMs, some do not. Some cover all pumps, some cover specific ones. Some people never have to fight about how much insulin, or test strips, they get per month. This is just ridiculous that we are accepting this.

Standards of care for children with Type 1 diabetes has radically changed within the last ten years and the insurance companies need to radically change the way they cover children and their supplies.

It's simple. What does that child with diabetes need to live a full, productive and rich life? Give us that. Sign me up.

Wednesday, April 16, 2014

Information overload

At our quarterly endo appointment, Grace's endo decided to download her Dexcom CGM data for the previous two weeks. No problem, or so I thought. About 30 minutes later she appears - because she couldn't get the software to download the data (that's a whole other story about how cumbersome it is to download your OWN numbers and information - don't even get me started that nothing Grace wears/has/uses is Mac compatible - it's like being in the Dark Ages - end of rant).

She is smart as a whip, our endo. Extremely engaged, knowledgable about diabetes, the body, insulin, Type 1, you name it, she knows of it. I feel Grace is in very competent hands with her. She always has something to think about, to add or to just talk about with Grace. She gets Grace and understands her. I love her.

Here comes the BUT part. She lays out the sheets of data from the past two weeks and starts to talk.

'Why this high here?'
'I noticed a couple of lows the last two weeks.'
'Hmmm, do you think her I:C ratio is correct and working, she doesn't seem to be coming down quick enough after a meal.'
'How many carbs does Grace eat a day?' 
'What's her basal rates during the morning hours?'
'Why did you do a temp basal here?'
'This seems low right here during the day, twice, what can we do about that?'

Question after question after question. My head starts to spin. I look at the sheets, but all I feel and see is information overload. Seriously, it's like the computer in my head is full and cannot take one more bit of information. It's like seeing the blue screen of death or the spinning rainbow umbrella of doom on a Mac. I do not compute.

I start to talk, but I talk in basics. Grace just sits there and chimes in from time to time. Here are her rates, I say. I talk about how I use a lot of Gary Scheiner's work that looks at basal rate patterns to help me adjust and modify the pattern she should be in. It's masterful stuff, much of what Gary Scheiner has published and produced. I know her I:C ratios are good, she comes down within range about 2.5 hours after she eats. I use the 1800 rule to figure out sensitivity factors. They are right too. I do things by the book, and some not by the book. Sometimes I throw the book out the window and do whatever feels right. I continue talking, but I'm not making much sense.

Cause this is what I wanted Grace's endo to know, and this is why I stopped talking, looked straight at her and said:

These are the past two weeks of Grace's life. Do you know she was in her Middle School's musical production of 'Guys and Dolls' these past two weeks? She had school all day, then practice after school from 3-7:30 PM, and on Saturdays from 10 AM - 6 PM. She ate Wawa hoagies most days for dinner, ate pizza twice courtesy of her teachers, and she did it all herself. She was wonderful in the show, and diabetes didn't interfere with one blessed thing. She did it all herself, every single minute these past two weeks.

Her endo just looks at me. And I look at her, with a straight face that says I am done. Literally.

The fact that we are pulling two weeks out of the past three months always leaves me cold. It always leaves me nervous about the two weeks prior to the endo appt. No highs. No lows. Be careful, it's what the endo will see. Well, I have had enough of that crap. It's time we look at the grand picture, at a life with diabetes and not a two week morsel that is but a blip on the screen of life.

I turn to her OmniPod PDM meter and scroll through to get Trends for 30 days, 60 days and 90 days. Grace is in range 55% of the time. I should get a medal and Grace should get a flipping trophy for that. She spends 20% of her time low, and 25% high. Her range continues to be 80-150.

Now, let's talk. Let's look at some numbers here and see. I see her endo's eyes change. She comes down from the ledge of information and into her life.

Well, she's doing great. There's not one thing I would recommend we change right now. The fact that she is participating in what she wants to, on her own, is fabulous, and that she's caring for herself is even better. Keep on doing what you are doing.

I relax. I take it in. Grace should feel great about this. She does, after hearing this from her endo.
I give her a high five as we leave.
Grace comments 'And THAT'S how you do it.'

Monday, March 24, 2014

One giant tab of fate

My oldest daughter and I are at a tournament of hers, out of town. (My oldest doesn't have diabetes, she has autism. I know, how did I win 'all the things' in the 'this family doesn't have enough to deal with' game of life?)

We sit down to eat lunch, and two young girls come along with their mom. 

'Sure, you can sit with us.' 

As mom goes to get lunch she hands her youngest her test kit. This little girl about 7 whips it out and tests. I wait. I mean, really, what. are. the. chances?

She yells '38!!! I'm 38! That's REALLY low!' to no one in particular.

I chuckle, cause that's probably what Grace would have done at her age.

I look for the mom but she's in a long line, waiting to get food. It's across the high school cafeteria. 

I send the older sister to tell her mom. Tell your mom your sister is 38. Tell her that. 

I crack open my glucose tabs from my purse and hand her two. I don't even have my Type 1 daughter with me, far from home, but I carry them still. Now I know why I do.

'I know, honey, it's gonna be OK' I say. 

Mom rushes back to the table.

I say 'I'm sorry, but she was 38 and I gave her some tabs.' 

Mom just looks shocked. 

I say, I have one of those too. With a smile.

And don't tell me there's no such thing as fate.

Saturday, February 8, 2014

Blue Mountain

Invited to go 'tubing' with a group of girlfriends today at Blue Mountain in PA. It involved sitting in just that, a giant rubber tube, and riding it down the snowy hills of the ski slope. Again and again and again.

Grace asked me about going a few days ago. A friend's father was going to drive them there, a father I had yet to meet. I told her I would need to chat with the dad before I let her go. And sure enough, he called me. I spoke with him about 5-10 minutes and it was one of those phone calls where I know it's gonna be OK.

'Whatever she needs.' 'I'll leave the diabetes kit in the first aid office at the end of the slope and tell the EMTs there all about it.' 'If she needs something she can just tell me.' 'I can wear/hold some food for her if she wants.'

Yeah, that. The kind of conversation that leaves you with a smile. And I believe, just for a while, that diabetes is no big deal. Cause maybe it isn't.

She can go do big things, without me talking to whoever the adult is about glucagon and how many carbs she needs, and how to count carbs and how her pump works and what to do if Dex beeps. It will be OK. Diabetes can take a back seat.

I know how I am supposed to respond. I am supposed to be a nervous wreck. I am supposed to not let her go with a single soul who doesn't know what to do in every kind of emergency related to diabetes. I am supposed to educate everyone she comes in contact with about how to care for her, what to do, how to do it and when.

She just wants to go tubing.
And I had a 5 minute conversation that summed up where we are with diabetes.
And it will be OK.

I packed her snow pants with glucose tabs, granola bars and quick sugar, should she be on the mountain and need it. Her diabetes kit, full of everything she would need for care and a pump change, will be with the EMTs. The dad has my cell phone number should anything happen.

Grace is going tubing.
Have fun, sweetie.

Thursday, January 9, 2014

5 years

Today is Grace's 5th year with diabetes. Her 5th 'diaversary' with it. She was diagnosed on January 9, 2009. You can read about her diagnosis story here. You can read about year one, year two, year three and year four too. 5th is the traditional anniversary year of giving wood to someone. Who the heck does that - give something wood-ish to someone? I'm not even gonna think of something to relate wood to in diabetes. You're welcome.

Year 5 takes the turn. It takes it right into 'here we are and we keep on ticking.' It's sort of the eventuality of it. Year 5 is commitment to it. Year 5 is when you decide that the things your sweetheart did that you first found endearing are now as annoying as hell. It's the time that things get real. You are either in or you are out.

Grace is now 11, and she will have had diabetes for half her life when she rolls into 12 in July. There ya go for some straight up nonsense. Imagine that, half her life. Cause when you acquire the D at age 6,  it's gonna be a long time that D stays. (God willing, huh). That's something that still stops me in my tracks. She's not gonna remember the times before diabetes. Crap. It's gonna just fade. And I remember those times, but she won't carry the memory. D sometimes just sucks the life out of the party, don't it?

Today though, on 5 years in, I think about commitment to keep on going. D has revealed itself to be a wily little character, always throwing something our way to keep us on our toes. It has not endeared itself to me yet. I don't get the warm and fuzzies about it. I don't think I ever fell in love with it, but here it is. The commitment is what keeps us going. Not so much the commitment to the lousy and ever-present D, but to the health of my daughter to live a strong and healthy life. Damn straight I will commit to that.

You see, what D doesn't quite get to take is the spirit of an 11 year old girl. She rolls with the punches, she gets back on the horse and she commits, damn it. Commits the hell out of it. Again and again and again, 24/7, 365 commitment. Hell with 5 years, it's more like 1,826 days of commitment. 2,628,000 minutes of commitment. Two million some minutes.

I salute you, Grace. For your commitment, your bravery beyond measure, your attitude that you don't take any crap, and your willingness to do what it takes to live this life, diabetes be damned.

Hell with wood, baby, you are steel.

Happy 5th Diaversary, Grace.