JDRF Walk 2015

JDRF Philadelphia Walk 2015

I wish I could say more about it, but maybe what I have to say is just as profound as if I wrote endlessly about it. We went to the Walk. We had a great time together. We saw friends. We felt community. In the end, we made an appearance.

Perhaps the appearance is what it's all about. Showing up. When things get rough, just show up, isn't that the spirit? People need you, just show up. Work gets hard, just show up anyway. Diabetes gives you one hell of a day, just show up.

The showing up is sometimes all we can muster in the face of diabetes. We are approaching seven years in. And yes, thousands have had it longer than Grace, I know that. And she's had it more than half her life now, at age 13. I always thought about this day, early in the diagnosis. I would say to myself 'at age 13, she will have had it half her life.' And here she is, age 13. There will be soon be a time where she won't have known not being diabetic.

Facing and living with chronic illness, you come to certain bends. You go around them, sometimes fast and sometimes slow. I find myself out of all the turns and the bends, and then suddenly, one comes. And we ride it once again, til all is right in our world. I don't suppose the bends ever stop.

I wish I could say we made signs, we recruited team members, we raised money for JDRF, but we didn't. I just don't have it in me right now. My plate is full. There is no other energy to devote to it. And before everyone gets all righteous about it all, stop. I'm not even going to ask for forgiveness on this one.

We showed up. We smiled at others with little kids with diabetes. Kids looked up to Grace with her OmniPod and her Dexcom, worn on her arms. They watched her eat Wawa apple slices and pretzels, potato chips, snacks, and watched her dose. There was our advertisement for a life lived with diabetes.

We walked around the bend and saw our beloved Boathouse Row. We stood in the shadow of the Art Museum. We saw the river move. We talked about history and the glory that is the Waterworks. And we decided to not walk the whole walk. We turned around, and walked back to the Art Museum steps together, in our Sweeties with Betes t-shirts. People smiled and chuckled. We kept on talking and walking.

As we waited to say goodbye to her friend, we sat on the steps. Grace marveled that her feet are almost as large as Rocky's at the top. We watched people run up and down them, in true Rocky fashion. We eventually walked back to the car.

'It was a good Walk, wasn't it, Mom.' said Grace.
'Truly was this year, sweetie.' I said.

This year, we showed up.

D Camp - Year 6

This year she moved to the teen camp. Yes, that side of the camp where the 13-17 year olds reside. It was a big deal not to be on the 'kiddie' side anymore. It was also her 6th year of camp.

The excitement was there, but in a different way. It was less of 'YES I am going away from this house and family for six days, hallelujah!' and more of a 'I get to take a deep breath with my fellow T1-ers for the week.' It was more 'I needed this' than ever before.

Packing has become old hat. I think we started the day before. Check this, check that, yes Mom I have that. Mom can we get this. Mom don't forget to wash that. And it all fit. It always does.

She communed with her DBFF, Lily. The ever-faithful Lily. The one she met 6 years ago and on the car ride home, stated to me 'Lily will always be my best friend, mom. I love her.' That Lily.

And there's now another chain on the link of BFFs, Megan, who she met last year at this camp and lives five minutes away from us. Who would have thought, huh?

Friends. For life.

Her cabin held some of the same girls. They did some of the same activities as previous years. They tried new things. Her endo at camp, Dr. Jill, was delighted to see her, remembering that Grace will need a temp basal decrease if she swims or is really active. She remembers that Grace carb counts like a champ. She remembers her as sweet.

When I drop her off, I make her bed, as I always do. I get her set up. Then I say goodbye. It's not sad at all this year. She is home. She is happy.

I'll see her in 6 days and we each will be renewed, for different reasons.

Happy 13th Grace!

13. A teenager.
How did we get here? How did time fly so very fast?
Doesn't everyone say that, how it all goes so fast. The old saying 'The days are long and the years are fast' bodes true. We got here day by day.

13. A teenager.
Thirteen years of Grace in her wonderfulness. Smart, snarky, funny, belly-laughing Grace. She is one of a kind, all her very own. Isn't that grand?

13.
I hope it's the best year yet, sweetie.
You will rock being a teen.

We love you, without end.
oxo

Dexcom Share (or not)

After a multitude of phone calls about replacing our out of warranty receiver, Grace finally got the new Dexcom Share capable CGM. It came on Thursday and by Thursday night, that little transmitter (sleeker, smaller, flatter!) was on her. I wasn't wasting any time seeing what all the fuss was about.

Grace and I have had multiple, ongoing conversations about using the Share system, which allows people that she invites to see her CGM data. At first, total resistance to the whole idea of anyone else but her seeing her numbers. TOTAL. RESISTANCE. As in, 'Mom, there is no way I would ever share my numbers with you.' Regardless of the fact that I pick up her CGM at home and look at it whenever I want. And so does her Dad. There was no way Grace was going to have HER numbers on OUR phones.

Little by little, she came around to seeing a small, tiny, probably incalculable, value to having just me and her Dad able to see her data on our phones. Just a teeny bit of opening of the door in her mind to having others help her, or look out for her. She liked the idea of having us see data during sleepovers.

She agreed to invite me, her Dad and finally, with a push from me, the school nurse, to have access. We set up the Share and she went about inviting just us three.

Then, she saw it on her phone.
And she saw that SHE was able to access her CGM data just by looking at her phone, and not at her CGM device. She said "Mom, it just looks like I am checking out something on my phone, but really I am checking my CGM!"

A - HA!
The light came on.
"If I can be a spy on my data, you and Dad can too."
Oh no.

I told you, she's a smart one, my cookie.

"But I can turn OFF data notifications to you, Dad and Mrs. L."
"Yes, honey, I am fully aware that you can turn us off. Don't even think about turning off Daddy and I. You can turn off Mrs. L while you are on Spring Break."

Grace wanted to establish some rules for the Share. I think she wants to know when and how we will be using it. She wants, above all, NOT to be bothered by us notifying her when she is high or low, that she says she will take care of it on her own. We've had plenty of conversations about it, and we have come to some agreements:

• We will not text Grace when she is high or low. We can see it, but she will handle it.
• Her numbers are her numbers and we shall not assume she's not taking care of herself.
• We will not look 24/7, and we will assume she HAS dosed for everything she eats.

I agreed. She agreed. Dad agreed. We have the nurse on board to agreeing to help her take care of herself and not intervene unless she feels it's an emergency.

And just when you think it's all settled, that there are the rules by which you will all play, it all comes to a screeching halt. Grace put on Dex on Thursday, we went live with Share on Thursday night and Friday morning, she went to school. (You know where this is leading, don't you?)

Friday morning she woke up, from a little low a couple of hours beforehand, ate breakfast and dosed. Pretty usual stuff. Nothing alarming. CGM was reading 122 when she woke, and was confirmed with a finger prick. Grace went to school.

After dropping her off, I checked the Dexcom Follow App, and it read 255, with one arrow up. Hmm.  High for her, after eating. We usually don't get a spike like that with what she eats for breakfast.

About 15 minutes later, I check in again. What I see alarms me.
355 with DOUBLE ARROWS UP.
What the what???

I break the rules. I text her school nurse and ask her to please see Grace and ask her to check.
She does.
393.
THREE HUNDRED NINETY THREE.

Mrs. L brings her down to the office and she calls me at work. Her head and tummy ache. She doses 4.0u through her pump. She wants to come home. I turn around and drive back to school to pick her up. She feels lousy. We come home and I settle her on the couch. .6 ketones. I bring her water.

We say nothing about the Share App.
Until I say, "You know, I was happy I checked in with the Share, to see that you were so high. It worried me honey. I didn't mean to bother you, and I am sorry for texting Mrs. L., but I just wanted you to be safe."

Grace smiles. We might have opened the door just a wee bit more, to acceptance of others just helping you out because they love you.

What $17,144.40 buys

There is a cost to caring for someone with diabetes. And it's big. Nothing like getting tax information ready for 2014 to make me realize exactly how much it totals.

I was compiling the list of '2014 Diabetes Expenses.' This list includes juices, glucose tabs, diabetes kits, Unisolve, SkinTac, medical ID bracelets, school kits and batteries. And yes, I save receipts on it all. Every little thing adds up when you are constantly buying this and that. And for those people who say 'well, it's only $3, or $5,' I say to you, when you spend that every week, it adds up to serious money. This is just my out of pocket costs. More on that later.

Then I got to all of Grace's prescriptions for the year. The giant stack of CVS receipts for her insulin, test strips, ketone strips, glucagon, lancets, 'prickers' and lidocaine (for insertion of her CGM).

Grace has Pennsylvania state Medicaid. It's her only insurance. She got booted from the PA CHIP program (low cost medical insurance through the state) when she, in their words, not mine, 'became too expensive.' She is at the lowest insurance for the state. Since she has Medicaid, she has a $0 co-pay on all her prescriptions. All I can say is 'Thank the Lord!' because the care she needs would have bankrupted us as a family. I have fought tooth and nail for two medicines off their 'formulary.' She uses everything, there is no waste or overage on any of her medicines or devices.

And here, in all it's glory, is what it all her medicines totaled (CVS costs as listed on script):

Novolog insulin - 3 vials a month = $342.51
Lantus insulin - 1 vial a month = 195.46
Precision ketone strips - 3 boxes a month = $138.48
Glucagon - 2 a month = $336.12
Delica lancets - 1 box a month = $9.41
Freestyle test strips - 3 boxes a month = $381.17
Lidocaine cream - 1 tube a month = $25.55

Total for one month of medicines = $1,428.70

Total for one YEAR of medicines = $17,144.40

Shocking, isn't it? This is just for her medicines she needs. This does not even include the cost of her Omnipod pods or her Dexcom CGM receiver, transmitter or sensor.

I am thankful, each and every day, that she has insurance that helps us out. That keeps her healthy and alive. It's the best money this state has ever spent.

6 years

2015 brings year six of doing diabetes. While the other years have felt 'milestone-y,' this year does not. Grace mentioned to me the other day 'You know Mom, January 9th will be six years.' The way she said it was melancholy, not with an air of the incredible to it.

Yet it is, you know, incredible. All of it is.
Maybe I'd be best to remember that about year six.

Becoming complacent with diabetes means it will come and kick you in the ass, hard. Repeatedly.
To remind you that it should be taken seriously.

I find myself floating through days, days become weeks and soon it's a month, and all is fine. We have some highs, we have some lows, but we correct and glide onto the next day. Pod changes, yeah yeah yeah, every three days. Yes, reset Dex and move on. Yeah Grace, just dose on the Dex and what it says. All the motions, but none of the feeling.

Then a day will hit us that knocks us to our knees. We were complacent about the depth of this damn disease. And all of a sudden, we are 348, or we are 37. It hits and it hits hard.

Six years. 2,190 days. And here she is.

I often tell Grace that diabetes should take a backseat to whatever she would like to do in life. Let it ride, don't let it drive. Grace, don't ever let it drive. It stinks at driving. YOU drive. You know the way. You be in charge.

A few times this year Grace had times of not wanting to do it any more. Of being fed up with all the care, the monitoring, the getting the damn PDM once again to dose for something she wanted to eat, the hurt from a cannula that feels wrong, the fingersticks. All of it, wrapped in one big bow. One never thinks it will be their child affected by depression in the midst of diabetes, but that monster is leaning in, over our shoulders. I kick it away. It doesn't obey and comes back just to look at us, daring us not to listen for a bit to what it has to say.

I can tell her I understand, but I don't have diabetes. All I can do is listen and tell her how much she is loved and care for, how much I would take it all away in an instant if I could, how brave and strong and true she is to do this, day after day after day, and how very resilient she is. And as the words leave my mouth, I pair them with my prayer that she live a long life. A very long life.

They give medals for living with diabetes 25, 50 and 75 years. Damn it, they just added the 75 year one cause people finally did live 75 years with it. Imagine that, before this time, they didn't even have a damn medal cause people didn't live that long with it. I pray she gets a 75 year medal.
She will be 81.

All of this floods me at year six. It's the year we know we are on the road for a good long time. I cannot look too far ahead with Grace, I have no idea what the road will bring to us both. We just stay in the driver's seat.

I know she is strong.
I know she is loved beyond measure.
I know she made it one more blessed year.

Happy 6th Diaversary, Grace. Only 69 more years til that medal.

You can read about our other years here:
Year Five
Year Four
Year Three
Year Two
Year One