Only Here For My Surface Interval

 

As I unpacked from our trip to Bonaire, I thought about what it is that keeps me coming back to the ocean. Sure, it’s beautiful and relaxing, but for me it’s something more. It’s feeling connected to life on earth in a deeper way than I feel connected on land alone. I do feel connected to the earth on land. It’s part of the reason I make a point to try and exercise outside in the morning before work. Whether I see deer or a hawk, or revel in the layers of sound – insects, then birds, then leaves rustling, maybe squirrels or deer crashing through the ravine – I feel spiritually connected to other life. But I feel this in a deeper way, coming full circle, underwater. I know the boys have tired of diving and it has a “been there, done that” feel to it for them. But for me, it never gets old.

I am reading Mary Oliver’s book of essays Upstream. I love her poetry for its attachment to nature and its recognition of solitude, loneliness and our fleeting lives. She begins by writing about a time she wandered away from her family, upstream in the water.

“My heart opened, and opened again. The water pushed against my effort, then its glassy permission to step ahead touched my ankles. The sense of going toward the source. I do not think that I ever, in fact, returned home.” 

She went on to write about the connectedness of all things: 

” Do you think there is anything not attached by its unbreakable cord to everything else… Understand this from the first certainty. Butterflies don’t write books, neither do lilies or violets. Which doesn’t mean they don’t know, in their own way, what they are. That they don’t know they are alive – that they don’t feel, that action upon which all consciousness sits, lightly or heavily. Humility is the prize of the leaf-world. Vainglory is the bane of us, the humans.” 

Being in the ocean, especially diving and snorkeling, make me feel connected to the full circle of life. Huge corals larger than me make up the forest of the ocean. I regularly contemplate the relationship between fish and birds when I watch the different ways fish move underwater. Those grey parrotfish look an awful lot like African grey parrots. Fish have their own personalities. Some are shy and scatter quickly, darting by like blue tang. Other shy ones recede into a closed space and look out at you, like the porcupine fish that hung out under the ledge in front of our condo. Some, like all manner of parrotfish, ignore you completely. My favorites are the Odd Shaped Swimmers from the Reef Fish guide to Florida and the Caribbean. The filefish who are a little shy but will let you regard them from a distance. The honeycomb cowfish with its weeble-wobble body gliding around. The trumpetfish who regard you with curiosity from a safe distance. One followed us off and on for the second half of our dive after I recorded it hunting, suspended vertically in the water like an exclamation point. I love to be in the middle of a school of fish, thinking “Where are we going, friends?”

Our dive gear is still laying out to dry on the basement floor. I should put it away but I don’t want it to be over. I know there will be a next time, but I don’t know where or when. This year I decided that I am not too old to put stickers on my computer like the young folks. I saw one that says “I’m only here for my surface interval,” the period of time a diver has to spend out of the water to rest and let nitrogen escape from their tissues. It gave me a good attitude – when I am not having a good day or feeling discouraged by the state of our school, our city, our country, the world, I remember that I am just on my surface interval and I’ll be back underwater when it’s over.

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Some Nutty Mom

I spoke to the Columbus City Schools Board of Education again last week. It was my third visit this school year. I went because one of the board members encouraged us to keep coming back, not to get tired and go away. I am tired – we are barreling through the month of May toward the end of the school year and I have been up many nights treating high blood sugars. But I came back.

I wanted to tell them that they could do better for our high school. They announced last month that they would invest $1 million in upgrades to our building, including air conditioning the cafeteria and library, and upgrading bathrooms. But then it was revealed that the district identified $29 million for upgrades to other buildings in better condition than ours. I asked them to look beyond 2020 and come up with a better plan.

I try to use the skills I have to make a difference, usually focusing on the things that are right in front of me. Our school. People with Type 1 Diabetes. A little farther removed, gun violence. It makes me feel like I do my part for things I believe in.

A couple years ago, I met with a volunteer about advocacy work I was doing with the Central Ohio Diabetes Association.

“What’s your qualification for doing this?” he asked. I explained that advocacy used to be my job before I had kids.

“Oh,” he said “I wondered if you were just some nutty mom.”

“Some nutty mom?” I thought. Don’t get me wrong, I am some nutty mom. Just ask my kids. But, really, “Some nutty mom?” Look at Mothers Against Drunk Driving, JDRF, Moms Demand Action Against Gun Violence…all started by moms.

After a long pause, I answered “This is a way for me to use my skills to give back.”

I’ve been thinking about that phrase ever since. Thinking about it when visiting eight congressional offices for JDRF this spring, when Rep. Steve Stivers agreed to all of my asks on the spot because he remembered that I came to see him with my son and other advocates. Thinking about it when I got meetings with three of the four Northeast Ohio congressional offices I cold called, and all three signed the letter we were circulating.

Thinking about it when going to a legislative hearing on stand your ground legislation at the Ohio Statehouse and to Advocacy Day with Moms Demand Action Against Gun Violence.

And yes, thinking about it testifying before the school board last week, when the board president said,”Good evening, Mrs. Freeland, and welcome back.”

Yep, I’ll keep coming back. I’m some nutty mom.

#somenuttymom

In This Together

NBC news aired a segment last month about a group of young people who went to Tijuana to buy insulin because they had trouble affording their prescriptions. Together they spent under $900 for insulin that would cost them $8500 in the US. I loved that the story focused attention on the Type 1 diabetes community as problem solvers and survivors, not as victims. I loved that they did this together. Still, one young woman’s quote made me cry.

“When you are a Type 1 diabetic, it’s you against the world and you feel like every single person is stopping you from getting that medicine that you need,” she said, beginning to choke up. “I didn’t think I’d get emotional; it’s just not fair.”

It made me tear up to think of the lifetime of this that stands in front of Adam. I am shouldering this now. I thought about the hours I spend on the phone trying to get supply orders and payments straightened out. Recently our insurance refused to pay a bill because they only allow you to order supplies four times a year. We only got one month of supplies when we transitioned to a new continuous glucose monitor system in the fall – a limitation either the manufacturer or the supplier sets, no one would answer my question when I asked for 90 days of supplies. So even though we only got 10 months of supplies in four orders, they denied the fifth order. I had foolishly paid the bill without looking closely and I needed that money back in our Health Savings Account when our deductible reset in January. It took me all morning to file an appeal. On the verge of tears over the time and effort it took me to do this, I asked Ron to reach out to his benefits department and have them escalate the appeal. I hoped that the employer inquiry would work in our favor. Eventually it did – we got a notice a month later that they ruled on our favor. I am still waiting for it to be resolved.

In December, our insulin pump supplier offered to do a benefits analysis for us. I took them up on it, and they said we could save money by getting our supplies through our pharmacy benefit. I called Optum Rx, our pharmacy benefits manager. After waiting on hold and being disconnected, I was told three times – THREE TIMES – that they don’t cover that. I had billing codes to give them and they said they weren’t accurate. Finally, I put my foot down and said “I don’t see why the manufacturer would lie to me about this. I am going to spell it for you. Please look again.” The rep, who was not at all helpful, said grudgingly, “I do have a five-pack available to you at no cost.” You might think my first thought would be “Great! We’ll take it,” but it was actually “What happens to people who don’t have the life skills to navigate our health care system?” They suffer the consequences.

Six months worth of Omnipod patch pumps 

This winter, the US Senate held hearings on prescription drug pricing. A mom from Indiana shared how her son had not realized how much insulin cost until he went to the pharmacy when he was in college. Stunned by the price, he bought less and tried to ration it to save his family money. Fortunately, the college faculty reached out to his parents because the consequences could have been fatal. They have been for other young people. It’s like Senator Ron Wyden put it – it has turned patients into beggars.

I belong to several Facebook groups – for parents of children with Type 1 diabetes, for users of our medical equipment (Omnipod and Dexcom) and for those awesome people who are taking matters into their own hands and hacking old insulin pumps to set up closed-loop systems that adjust insulin automatically based on blood sugars. These sites have been very useful for us in tackling challenges including site change highs, adhesive rashes and equipment malfunctions. But at times they are overwhelmed with bickering, negative posts and judgement.

The only one I look at regularly is the local page for parents, and it is full of nice people supporting each other. People ask for and receive advice without judgement. People offer up supplies they don’t need, including insulin. I was so happy to pass on several boxes of insulin someone offered up to an adult friend. Not infrequently, people ask to borrow supplies until their shipment arrives and I rarely see a request go unanswered. If I have them, I loan supplies out to other people until theirs come and then they repay us. Ron has gotten used to me calling or texting and asking him to put a piece of equipment in the mailbox. I have mailed new families test strips when they lived farther away. One in-person exchange was particularly funny. Meredith posted that their shipment had not arrived, and she needed a transmitter. We had never met, and we didn’t live near each other, so I offered to take it to work. Rather than have her pay to park downtown just to pick it up, I told her I would come out and meet her if she let me know when she got close. I told her I what I was wearing. I went outside and waited when she texted me. She pulled over on Fourth Street and rolled down her window. We laughed at how this must look, her pulling over in her minivan and me handing her a small box through the window. But we agreed: this is our life, and these are the things we do. We’re in this together.

I hope that Adam is watching these exchanges and realizing that it’s valuable to be connected to others in your situation. He wants to be a regular kid, and that’s fine. He did not want to go to camp for teenagers with diabetes last summer and he generally doesn’t want to participate in events. This disease doesn’t define his life, but it’s good to have connections so you can be there for each other.

Borrowing supplies is not a long-term plan for diabetes care. It does not change the fact that our health care system is broken. This week I am in Washington, D.C. with hundreds of other JDRF advocates to lobby Congress for affordable insulin, coverage of preexisting conditions, and funding for Type 1 diabetes research. Together we will storm Capitol Hill Tuesday and Wednesday, because we’re in this together.

Image may contain: one or more people, sky, cloud, tree, grass, outdoor and nature

#inthistogether

Close Calls

One of the hardest things about adjusting to diabetes care is the close calls, the ones where we are just waiting to see what’s next. Some involve medical equipment, others involve illness and still others unusual situations.

The first one I remember involved a glucose meter that wasn’t working. This was back when we were low-tech, nothing attached to Adam’s body. Adam felt like his blood sugar was low. His hands, still round with childhood, shook as he squeezed a drop of blood out of his finger to test. We waited. 140.

“That’s not right,” he said.

“I believe you,” I told him. I got out a different meter. This one said 71. That’s more like it. He had juice and we waited to retest.

After repeating the test a few times on both meters, I called the company. The young man on the phone, probably young enough to be my son, told me that tests can vary by up to 30% under FDA guidelines. I mentioned that if math serves me correctly, the difference between 71 and 140 is a lot more than 30%. After a long pause, he said “Ma’am you need to stop doing so many tests; you’re driving yourself crazy. ” He did not seem to grasp that in a little while, I had to dose insulin and how much I gave Adam depended not only on what he was eating, but also what his blood sugar was.

Adam and I moved on and went to the gym. When I hit shuffle on my music, what should play out of the hundreds of songs on my phone but “Stayin Alive” by the Bee Gees. I teared up because that’s what we were doing, staying alive. In the end, I got rid of that meter. At the suggestion of my favorite pharmacist, Fred, I bought another one that used the same test strips but was more reliable. Two checks in a row were always within ten points of each other. (OneTouch Ultra2 if you are wondering).

Other wait-and-see situations involved adjusting to insulin pump therapy. People who use an insulin pump must change the site every few days so the body doesn’t develop scar tissue that occludes the site. In our training, we were taught to do a site change and then dose for a meal on the new site. The large dose would get the site started absorbing insulin. I am not sure that has worked even once. On the contrary, it’s awful in most cases. Eating on a new site results in a blood sugar triple what it should be. It takes hours and hours to get it back under control.

Here is where I am so grateful for social media. Much of what I have learned is from other users, most of them adults who have figured out how to manage to the best of their ability. One in particular uses the same pump we do and laid out for me in detail her system for successful site changes: dose for a meal, eat and then do a site change while that meal insulin is still active. Give a good dose on the new site to get it going. Leave the old site on for a while. On a good day, this is still what works best for us.

Other times we have not been sure the pump was working. In the beginning, I would get out the book our doctor gave us and turn to the page on unexplained high blood sugars (haven’t eaten and forgotten to dose, aren’t sick, having a middle of the night growth spurt, having PMS, etc). It involves a series of wait-and-see exercises. Give a correction and wait 45 minutes. If it doesn’t begin working, think about changing the site. After two hours, give a correction by manual injection and wait some more. Along the way, check for ketones. Naturally, we would like to be sleeping during many of these episodes. Once this happened at school and Adam called me at work.

Roller coaster

“My blood sugar is 381 and I don’t know what to do,” he said.

“OK,” I said. “Let me think.”  I asked how much insulin his pump had “on board.” I subtracted that from the amount it would take to bring his blood sugar down and added the amount he would need for lunch.

“Should I eat lunch?” he asked. I usually make a low-carb meal for him if his blood sugar is elevated. I told him to go ahead and eat, but to inject himself with the amount of insulin I calculated. Injections work faster than the pump. In the end, it worked out fine and his blood sugar came back down and stayed level. But it’s hard to convey the stress I was feeling at work and how much I did not want to be there.

Other close calls have involved illness. Adam had one bad stomach virus that was  stressful. He began vomiting in the night. It’s really important to check ketones when a person with diabetes is ill. Usually this is done with urine test strips, but it can be done with a meter using blood. I did not have the test strips for the meter, which are really expensive, costing $4 each at the pharmacy and $1.50 each on Amazon. On this particular occasion, he was too dehydrated to produce even the drop needed for the urine test strip. I waited until 7:30 am when I texted the neighborhood mom I thought would be most likely to have test strips. She was in the same boat – she thought it would be a good idea to get some but hadn’t gotten to it yet.

I put Adam in the bathtub and after a soak, we got the sample he needed. He had trace ketones, and just needed to stay hydrated. All day I gave him Gatorade and insulin for it until he felt better. The following day he rested. The third day, he said he felt good enough for breakfast. I made his breakfast and he gave himself his insulin, but once he sat down to eat it, he couldn’t. Then we had to figure out how to make up the carbohydrates we just gave him insulin for. I made the largest tumbler of Gatorade I’d ever seen. I told him to start drinking. I was sitting on the couch dressed for work. His blood sugar was dropping and he’d consumed the whole tumbler.  At one point, I told him we’d give it ten minutes and then I was going to get out the Glucagon pen and give him a mini-glucagon dose. Glucagon is a chemical that signals your liver to dump the glucose it is storing into your bloodstream. Usually it is used in emergencies, and it’s expensive. It costs over $200 per pen and once you open it, it lasts only 24 hours. Luckily, his blood sugar came back up. But I didn’t go to work. I am thankful for a job where I can call and say I am staying home or working from home right now.

The other close call that comes to mind is our  first boat dives after diagnosis.  It was

adam diving.jpg

Back at it: diving a couple days after feeling sea sick

summer in South Florida (because the weather had not cooperated our whole spring break) and we were not diving on our usual boat, which was full. We were diving with a captain we’d been out with before, Captain Susan. The weather was hot, which affects blood sugar levels, and the water was rough at the surface. Our first dive went OK. The current was significant, but we were used to it. Between dives, though, Adam’s blood sugar was in the 70s and we needed it to be almost twice that. He drank ginger ale. He was feeling seasick, as was another boy on the boat who was getting sick off the side. I knew the best thing for him was to get back in the water, because once we got below ten feet, he wouldn’t feel sick anymore. But if he threw up, we were staying on the boat to start the sequence I outlined above – checking blood sugars and ketones. I was really sweating it. Fortunately, we got him back in the water and it went OK. But it was stressful. I burned through my air pretty quickly on that dive due to stress.

In the end, we keep going. It gets easier. I no longer need to get out the book to look up unexplained high bloods sugars; we just dose and wait, inject and wait. I catch sleep where I can in between checks, watching and waiting, ready for the next close call, because this disease is unpredictable and there will be one.

 

The grocery store and other heartbreaks

It’s been two and a half years since Adam’s diagnosis with Type 1 diabetes. While most days this feels like our new life with its planning and constant vigilance, at times I still long for our old life.

Last winter Adam and I went to the store to pick up ingredients for a lasagna. At the end of the pasta aisle, we passed the kosher food section.  On the end cap, Adam pointed to a bag of Bissli, a crunchy salty snack.

“Remember these?” he asked me wistfully.BBQ-Bissli2

“I do,” I said.

I always stop at the clearance section before I leave the store. One summer there were bags of Bissli for a quarter. I stocked up on them and kept them in the van for quick snacks. They were like barbeque Fritos. The boys ate them at the pool, or on the ride home from camp when they were ravenous from an afternoon of playing in the sun. It was a different time for both of us.

“How many carbs are in it?” Adam asked.

“18.”

“How many servings in the bag?”

“Two and a half,” I answered (Seriously? Not a very big bag).

We stood there in the store, both of us thinking of a different time and feeling sad.

Adam was remembering a time when he could open a snack and eat it without a care in the world, without the chain of questions that come with eating now. How many carbs are in this? Does it have fat or protein in it? What is my blood sugar right now? Do I have any insulin on board? Am I going to be active? Is it close to bedtime? For the most part, Adam accepts this with grace. He checks his blood sugar, counts his carbs, gives his insulin, changes his pump and his continuous glucose monitor. He does all this without complaint, if not always without delay.

I was remembering my minivan life, when I took a van full of boys on adventures to the pool,  sledding, Alum Creek State Park beach, Inniswoods, Indian Village camp and Stratford Ecological Center. I was remembering the bag of snacks I kept in the car to eat while we were there, or to get us home. I was ready to be done driving my minivan, but I miss those adventures with a profound sadness.

Adam and I looked at each other with heavy hearts. I put the Bissli back and we got our lasagna ingredients. But the next time I went to the grocery, I bought the Bissli. I put it in the back of the pantry, saving it for an adventure.

Other items in the grocery store make me sad, too. When Adam was 10, he started going to the store by himself on his bike to buy Hubert’s lemonade. It comes in different Hubertsflavors. Sometimes he got regular lemonade and other times the diet lemonade sweetened with Stevia. It made him feel grown up to go to the store by himself. After the diabetes, there’s no more lemonade, unless his blood sugar is low. And Kroger has stopped carrying the diet Hubert’s lemonade. He still goes to the store by himself and gets other things, but the sight of the Hubert’s makes me long for a time we could be carefree. The same goes for grape soda. Not that anyone needs soda, but Adam always loved grape soda and there are not many options without sugar .

taco saladPeople’s food pictures often make me sad. Pictures of frosted donuts and gooey desserts, plates of fried food laden with fat and carbs, a wicked combination. How lucky is it to be able to put something in your mouth and eat it without thinking it through- whether it’s junk food or an apple? I know families in other circumstances feel this, too, whether it’s food allergies, eating disorders or anti-seizure diets. Could Adam eat that plate of carbs and fat? Yes, but not without a lot of management and a lot of insulin. Sometimes I think about posting my own pictures, with captions like “Taco salad I made Adam when his blood sugar was too high for carbs.”

But the biggest heartbreak is when Adam apologizes for an inconvenience. Last summer he padded into my room around 1 am.

“Mom,” he said “My pod came off.”

I sat up and got out of bed.

“OK,” I said. After checking to see that his blood sugar was still in range, I said “I’ll go downstairs and fill another one. You shut that one down.”

Coming back upstairs, I got him an alcohol pad to clean his site while I primed his insulin pump.

“I’m sorry, Mom,” he said.

“It’s OK, honey,” I told him. I always let him know that I am happy to get out of bed to help him, no matter how tired I am.

We got his new pump on and I tucked him back into bed. As I kissed him on the head, he said again “I’m sorry, Mom.”  That broke my heart.

“You don’t have to be sorry,” I told him, choking up. “I’m sorry you have to do this.”

Last week, I got up at 4 am to give him chocolate milk because his blood sugar dropped below 75, just like I did at 2 am this morning. I tiptoed in and held out the straw cup for him.

“Adam,” I whispered. “I have chocolate milk for you.”

“Thank you, Mom,” he said sincerely, this fourteen-year-old kid whose daytime vocabulary often consists of grunts, along with “five minutes.” and “I don’t know.”

“You’re welcome, honey.” I told him.

It’s not our old carefree life, but it is a good life and I’m thankful for it, heartbreaks and all.

It’s a fine line we’re walking

The biggest adjustment in our life with Type 1 diabetes is the balancing act we are always doing. There are so many things to remember and most days we do a good job of  being organized. We do our best to dial in Adam’s insulin settings and make the right decisions about food and activity. We carry sugar to raise low blood sugars. Adam has it in his backpack and his pocket. I have it in my purse, in the car and in my bike bag. He has extra insulin, pump supplies and a spare meter at school and he takes a bag other places. But we have our moments where things fall through the cracks.

Last fall, Evan and I went on Adam’s Boy Scout camp out. Ron usually goes but he was out-of-town. I tried to fade into the background and just be on site for helping with carb counting at meals and making sure he was in a good place at bed time. The first night Adam gave himself too much insulin for the Oreos they had as a bedtime snack. I quickly gave him a juice. Then his pump, which is called a pod, came off. He started bleeding, soaking the side of his jeans. We retreated to the van to put on a new pod and change pants. Later, the evening activity caught up with him and his blood sugar ran low in the night. Five times I crawled out of our tent and went over to his, sticking my head in right next to him and asking him to eat or drink something.

Sometimes the best laid plans fall short. Last summer the boys went downtown on a bike ride on a Friday afternoon. Adam had sugar with him. I could see from looking at the Dexcom continuous glucose monitor app on my phone that he was running on the low side. After an hour, he called me.

“I’m low and I’m feeling better, but I don’t think I can ride home. Can you come get me?”

I jumped in the car and headed down there, naturally hitting a bunch of traffic. When I arrived, he was sitting in the grass on the Scioto Mile, with Evan right next to him. I put his bike in the back and we headed home. Evan continued his ride.

gym low

Waiting out a low at the gym

Another evening we went to the gym after dinner. Even though we were there to do strength training which doesn’t lower his blood sugar, his insulin seemed to get there before his food. He used his sugar and waited. Then my backup sugar and we waited some more.  I did some planks next to him. Evan did his exercises. Eventually, we gave up and went home, it just wasn’t our day. I don’t think he’s been back since.

One Saturday evening, the three of us rode downtown to a car show. Adam had sugar with him and I had some in my bike bag. It was hot, which affects the blood sugars. He ate some jellybeans when we got downtown and some more before we left.

lets ride

Riding home after the grape soda

On the way home we got to Tuttle Recreation Center and stopped to drink water. His blood sugar was still on the low side and he ate what I had in my bag. He could probably make it home, but I thought I’d go over to Tuttle Pool and see what they had. I was happy to see I knew both people working there from Indianola Informal K-8, the boys’ old school. I asked what snacks they had.

“Just popcorn,” said Deirdre. That wasn’t going to help us.  Then she added “I have grape soda but it’s warm and I don’t want to sell it to you,” she added.

“No, actually, I need to you sell it to me,” I told her. She looked at me like I was crazy, but she was so nice about it (Indianola kids). “Really,” I told her. “My son’s blood sugar is low, and we’ve eaten all our sugar.”

We sat at Tuttle for a few minutes, sipping warm grape soda before we headed home.

In California, we had a perfect storm of setbacks. We were sleeping on the boat with our sister-in-law Carol. We took the supplies we needed overnight but left most of our belongings at the house, which they fondly call the casita (it’s a mother-in-law cottage). At bedtime, I went to turn Adam’s insulin up for a couple of hours. I programmed the controller and asked Ron to take it over to him in the front berth because my sprained ankle hurt. The controller, called a PDM (personal diabetes manager) tried too long to communicate with the pod and eventually shut the pod down, so it would not deliver insulin. I should have brought a spare with me, but I left it at the casita, so I climbed off the boat and drove back for the whole medical bag. We got the pod changed only to find the continuous glucose monitor began sending us false low blood sugar alerts. Because he wasn’t feeling a low blood sugar, Adam did a check and it was way off. After three trips across the boat in the dark to turn off the alarm, we powered down his phone for the night and went without the numbers. Our third attempt to go to sleep was interrupted by a faint beeping. It took some time to locate the noise, which was coming from the failed pod in the trash. Then we couldn’t find a safety-pin or paper clip to disable it in the middle of the night, at 1 am on a boat. I learned to keep a paper clip in his kit.

Now there are the times we are managing remotely. This fall Adam went to a birthday party at Scioto Audubon Park for a kid he hadn’t seen in a while. He rode his bike there. He texted me later that he went back to the kid’s house, and he asked to spend the night. It had been over a year since he had a sleepover; some of his friends had stopped coming around during that time. I thought right away of an obituary I read that week for a little girl in Pennsylvania who had gone to a sleepover, had a complication from a low blood sugar and never woke up. Around the country people were praying for her as she was in a coma. After determining there was no brain function, her parents turned off the life support and donated her organs. I thought about that and I still said yes to the sleepover because Ron and I decided in the hospital that we wanted Adam to do all the things he wanted in life, even if we had to do them on our own terms or do them with him. I packed up his toothbrush, his headphones and his emergency medical supplies and delivered them to the sleepover. The parents, whom I knew but hadn’t seen for a while, were terrific. I started the conversation by asking if they knew Adam had Type 1 textdiabetes. The mom said, “If I knew that, I had forgotten it.” The dad was familiar with the disease. I showed them the emergency glucagon pen and how to use it if he was unconscious or unresponsive. If they didn’t want to use it, that was OK, they could call 911 and then call me. Adam and I would text each other to make decisions and manage his blood sugar. I would only need to call them if he didn’t answer me. They both offered that I should call any time.

I did need to text Adam that night. First his blood sugar was too high after midnight (pizza). Then, about 5 am, it was too low. I texted him three times with no response. I called him twice. I was about to call the parents when he answered me “OK. I got it.”

He’s a teenager now and I can’t hover over him. Last week I had a nice lunch with the diabetes resource nurse at Columbus City Schools. We were talking about the importance of letting kids go at this age and trusting that we have the technology to help us stay on top of things. So, Saturday when he asked at 11 pm to sleep at another friend’s house instead of getting picked up, I had that conversation at the front of my mind. I felt a little sick as sent a series of texts to the mom, whom I knew pretty well but hadn’t seen for a while: that Adam has diabetes, he wears an insulin pump and a continuous glucose monitor I can see remotely, that we text each other to make decisions, that he doesn’t have back up supplies so I’ll need to bring them if his pump fails, that I will need to call her if he doesn’t answer me, and the kicker – that I need her to call 911 and then call me if he is unconscious or unresponsive for any reason. I am so thankful that she took it all in stride and he had a good sleepover with little sleep and no problems.

It’s a fine like we’re walking, but it’s important to let him go.

OK
I got it

 

Shirley Washington

I know, the title sounds like a Blacklist episode, but it’s not.

I had my music on shuffle at the gym this week when “Bory Samory” by Alpha Blondy came on. I used to listen to Alpha Blondy, a reggae/world music artist from the Ivory Alpha Blondy Cocody Rock 1984Coast, on a mix tape I brought back from Europe in 1988. He sings in his native Dioula, French and English, and sometimes a smattering of Hebrew and Arabic, as his music is political and spiritual.

I never understood all the words to “Bory Samory” but I know it is about African independence leaders. I recognize the names in the song. I learned a lot about them in a class I took at Ohio University with Dr. Shirley Washington. This week, I found a translation of the song into French and I saw that it is about the murder of those political figures. Listening to the song, I got to thinking about Dr. Washington again.

Dr. Washington taught higher level political science classes. I took Politics of Africa, Women as Political Leaders and Politics of the Middle East with her. They were small classes, ten or twelve graduate and undergraduate students together. She put the desks in a circle so we could have a discussion rather than her talking at us. We looked at the history of the region, the legacy of colonialism, the roles of culture, religion and gender, and the current political climate. They were among my favorite classes.

I visited her during her office hours several times and we got to be friends. The first time I went for help with a paper, other times for recommendation letters. I learned about her. She was a widow. She lived in Ghana for a time with her late husband. She had strong beliefs and she cared little what other people thought of her. She was a breast cancer survivor. She was the first person I saw wearing a compression sleeve. I was curious and rather than stare, I asked her about it. She explained that her lymph nodes had been removed during cancer treatment and the sleeve helped with swelling in her arm.

I can still see her small upstairs office in my mind’s eye. She had a poster on the wall. I want to say the title was “Fathers of African Independence” but that may be a title I gave it because they were all men. I can still see some of their portraits. Studying them and looking at them in her office, I recognized the names in “Bory Samory.” Names like Kwame NKrumah, Sekou Toure,  Patrice Lumumba, Haile Selassie,  Steve Biko and others.

I learned other things about her from another professor. At one point, she stood up during an Ohio University Board of Trustees meeting to protest the fact that OU still had money invested in South Africa at a time when many other universities were divesting. That did not earn her friends in the university administration, and I can imagine some of  the very important people appointed to the board of trustees did not appreciate her comments. But she was right…over time those divestitures added up and they made a difference in South Africa. Interestingly, the other professor, Dr. Barnes, was surprised when I told him she had lived in Ghana. He didn’t know that about her, or that she was a widow. She kept that, among other things, to herself.

We lost touch over 20 years ago. I have tried searching for her on the internet, searching “Shirley Washington” along with political science, PhD, Africa, Ohio University. I tried “Shirley Washington obituary”. There are lots of Shirley Washingtons including a mayor in Arizona, a professor in New York and a Fox News TV host, but none that were her.

I tried Facebook. There were a few I wasn’t sure about – what would she look like now? – but none I knew were her. The last I knew of Dr. Shirley Washington she had left OU and was teaching at a private all-girls school in the DC area. I remember the last card I got from her. I told her I was getting married, and she wrote that she was happy for me and she remembered me, her favorite student.

Shirley Washington, wherever you are, I remember you, too. I love you and I’m grateful for everything I learned from you, inside your classroom and outside of it.