Emotional Toll - Diabetes Blog Week - Day #2

Thanks to Karen at Bitter Sweet Diabetes for the great topics during Diabetes Blog Week this week!

Emotional Toll

As a caregiver, it's hard to even think about diabetes and Grace without my head swirling with emotions. And they are not easy emotions, they are the hard ones. And no one ever tells you this as a caregiver. That your life will not only be bolusing, adjusting basals and insurance nightmares, but there will be crying jags and anger. They should really tell us that.

There are times when I think I glide through it all. I don't feel much, just go through the motions of doing. And I think I am fine. I can bolus via the PDM with my eyes closed, knowing how many button pushes I must make to get to a temp basal rate, scroll up through the percentages, to arrive at an 80% increased temp basal for one hour. It's 26.

Then, like water that is heated, it eventually comes to a boil. And it's usually triggered by something I can't seem to control. I can't get the damn high BG down. I can't get the damn low BG up. I can't figure out if the insulin has gone skunky. I am denied what she needs through her insurance. And the water boils. I am angry. Angry at having this damn disease in our lives, angry at having to do do do do do all this. Angry at how much time this disease sucks away from doing other things. 

The water boils when I think about complications. Even with the best of care, and the best of conditions, I know what diabetes long term can do. I read the data. I talk with doctors. The tight control is good for avoiding complications, but we all will lose the bet some time. Our bodies are not designed for the pancreas run by humans. We get it wrong. We make errors. We burn out. And it all has consequences. Every thing does. 

And that makes me sad. I think about Grace and her life being shortened by diabetes and I am filled with sorrow for what she might miss. The moments are fleeting when they come, but they do come. It's human to think about the end of our lives. And it's so unsettling to even begin to think about the end of your child's life. I shut it out when it comes, allowing it to open the door to peek at me, then I slam it shut. 

My brain is often at capacity for all things diabetes. And as I write those words, I imagine that my 13 year old's brain is full too. Always thinking, calculating, always on. I can step away, not think about it. And my child can't. 

To think it's all bad is to only see one side of the coin. The other side is emotional connection and the feelings of being at home with people who understand. That is what gets me through. I have other moms and dads who share these emotions. I have a network of caregivers to reach out to when the storms hit. 

Seven Years In: Riding Shotgun - Diabetes Blog Week - Day #1

Thanks to Karen at Bitter Sweet Diabetes for the great topics during Diabetes Blog Week this week!

Seven Years In: Riding Shotgun

I started this blog in December 2009 when Grace was just 11 months into her Type 1 diagnosis. She was 6 years old. At the time, we walked out of Bryn Mawr Hospital, just outside Philadelphia, and I knew not one other soul who had a child with Type 1 diabetes. Think about that, I lived outside the fifth largest city and I knew not one other person who had a child with diabetes.

So I did what every other parent does in 2009, I went online. And I found Kerri at Six Until Me. A woman who had Type 1 diabetes, diagnosed at age 6, just like Grace. It was a window into her world as a grown up. And it connected me. It made me see beyond the 6-year-old Grace, to the young adult Grace, able and well, and yes, still having Type 1. I couldn't see that in the hospital and in the months after it. And then the connections started growing.

And here we are, seven years later. Grace is 13. I still help manage her care, but girlfriend is pretty much on her own most of the time. I check in, adjust rates here and there, handle the insurance and supplies, but I am out of the minutiae of the care. Grace takes care of herself and leads the way in how she wants us all to handle situations and events. She takes control of her care team and lets them know if she needs a nurse for a school trip or not, if she needs to check in at all with the nurse,  if she needs to change a pump she decides when and where, she decides all of it. For most of it, I am out of the picture. And if you would have told me that seven years ago, I would have thought you were crazy.  

So, why am I here, still blogging after all this time? Cause there is always more to learn I guess. There are conferences to attend (CWD) and Type 1 friends to share it with. There are still connections to be made. There are people advancing the cause of diabetes with the bionic pancreas. There is always more to explore about having a child with a chronic illness. We still have to get through all the teenage years, going off to college and adulthood. I look to those who have come before to get a handle on what I need to know. I'm still riding shotgun here on this journey.

CWD Friends for Life - Falls Church, VA

We just came back from Children with Diabetes 'Friends for Life' Conference in Falls Church, VA.
We had attended CWD Technology Conference in 2013, in Crystal City, VA. You can read about that here. The previous one was in Conshohocken, PA in 2012.

And every time we go to CWD, we go with Grace's BFF, Lily. THE LILY. That's why they go, you know. So they can hang out together. Other than D-camp, this is when they see each other. This is when they commune, baby. Oh and commune they do. It's like they never were apart.

And now they are in the Teen group at CWD, because they are 13. The first time they ever met they were 8. And where did the time go? They pick up as BFFs do, right where they left off. They don't miss a beat these two. There is no warming up to each other. They just dive right in.

We see the iLet in person from the fantastically smart Dr. Ed Damiano of Beta Bionics and we almost cry. We want it NOW. I want to raise my hand and volunteer Grace for the hook-up and the clinical trial. I do not. He doesn't ask for volunteers. But oh, if given the chance, sign her up. Grace and I talk on the car ride home about it. "I don't know Mom, it has tubes." she says. My girl, so accustomed to being tubeless with her OmniPod. She would forego the iLet because it has tubes. I nod and say 'Well, that will be your decision when the time comes." Cause it really will be. And I mean it when I say it. I've learned it's hers.

There are sessions about social media use (shout out to the DOC! shout out to Kerri and baby Sparling!), hypoglycemia presentation by Gary Scheiner, and advocacy through DPAC. Lily's mom and I are snarky during some of it, somber at times, and thinking, "Oh dear sweet heavenly Lord, don't complain one more time, please hear us sweet baby Jesus." We knowingly smile at each other throughout the days.

We eat. We bolus. Grace wears both her Pod and Dexcom with flair. She never cares who sees it, what they think, and especially here at CWD, it's just part of the package. There are boluses flying left and right, people of all ages testing at tables, in the lobby, on the floor of the conference site. The green bracelets gather. The orange bracelets - the Type 3s as Gracie refers to us as - gather. The food is carb counted. Most people still guess. It's hard to break old habits.

              

It's a weekend of laughing, laughing and laughing some more. I believe at one point I may have peed my pants a little. It is what it is. Diabetes is there, but it's not the only thing. She is among her peeps. The laughter comes easy. Diabetes, for one weekend, comes easy.

Friends for Life. Yes indeed.

                

 

7 years

Lucky seven. Seven years in. I actually forgot about the date, until after I came back from a CVS run (test strips and Lantus this time) that Grace looked at me and said 'Today's my Diaversary!' Her friend Megan, also T1, had texted her and wished her a good one. Ah, the strength of friends to remember.

At any given point in any day, well, almost every day, I think of something I should write about in this blog, and then, well, time slips away and the writing doesn't happen. I think a lot about diabetes, as does any mom with a T1 kid. Diabetes sits like an old friend in this house now, not as that stranger who pops in and you wonder why they are just sitting on the couch still, looking around. Oh no, our diabetes is the 6th member here of this family. Right at home.

My husband and I laughed the other night at seeing a 45 on her meter at 6 am in the morning. I came downstairs after I checked her and said 'She's 45. I stopped insulin for an hour.' He laughed. 'Remember those days when we looked at each other and scrambled in the house. SHE'S 45! Like our hair was on fire. Now, it's like, yeah, she's 45, move on.' He asked 'Did you give her a juice?' 'I didn't' I replied, certain of what I know about my girl, that without insulin, even a drop, my girl shoots to the moon. Sure enough, at 6:30 am on recheck she was cruising at 92.

My hair is not on fire any more. I'm not panicking about lows and I'm not kicking myself about highs. We roll on, here. She will rise from the lows, and she will come down from the highs. It all works out. Does it seem nonchalant to others? It may. But I know making myself crazy with uber-control makes for one lousy mama to her and my other kids.

There are days that I don't hear from Grace all day about diabetes. I'm at work, and she is at school. I don't get texts about lunchtime BGs, or highs or lows. Grace texts the school nurse once a day before lunch to report in, mainly cause they want documentation, then she is on her way. She deducts carbs for lows, she adds in temp basals on her own, she adjusts her numbers. It's her diabetes, not mine. Took me a few years to get that.

Grace goes to sleepovers on her own, checking in with a BG to me at 10 pm. Then it's goodnight and I will see you in the morning. She calls if she needs help. She's off on day trips with her girlfriends on the weekend and I don't mention diabetes to the parents other than say 'Grace has diabetes. She manages on her own and is very independent. If she needs help, she'll text me or tell you she may need help.' They don't understand the workings of diabetes and I don't ask them to. Am I neglectful as a parent? I ask that question, then my head snaps hard and I realize that I have never really given a rat's behind what anyone thinks.

I know that she owns it now. I know that it is hers. I have taught her what I learned all these years, as I was learning it. She asked me last year how to adjust her basal rates, and we worked together so she understood some basics. 'I got it, Mom.' We negotiate putting on Dexcom - on for a week or two, then off. She chooses not to wear it all the time, for many sound reasons. I listen.

Isn't that the point of all this? That I teach my child how to handle and work with diabetes. That I teach her to be resilient, among all the things I do. That I teach her to get back on the horse that threw her, for the next ride. That I teach her she is so much more, so so so much more, than just Type 1.

Happy 7th Diaversary, my strong girl.

And yes, she chose the picture!

Read about our past Diaversaries here:
Year 6
Year 5
Year 4
Year 3
Year 2
Year 1

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