FaceTime

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.
OK. 
Do you want to go somewhere and FaceTime me?
Yes.

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.

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.

Available at American Diabetes Wholesale.

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!

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

Mantras

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. 

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.

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

pop
insert
click
beep
47 bg
shit
five steps back
quickly
rip
slide
puncture
DRINK
NOW
DRINK IT

sitting
bedside
cgm
south arrows
willing them to
rise
rise
rise
turn east i say
turn east

waiting
and waiting
and waiting

east they say
responding

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

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.