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Teacher, Caregiver, Nurse, Friend, and Advocate

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Parents of young kids with T1D know that sweaty palm, nervous gut feeling of leaving their child with someone new, especially someone new to diabetes. Handing over the diabetes equipment means handing over trust of your child’s consciousness, and over time, his or her long term health. It’s never easy to do this, but for two years, we worked with two amazing preschool teachers who will share their experiences of learning about Type 1 and managing it in a preschool classroom. “Teacher, Caregiver, Nurse, Friend, and Advocate” is by Alexis Johansen.

Diabetes. A word you rarely hear when going through college as an education major. You discuss behavior and disability interventions, teaching strategies, classroom management, and anything else that will prepare you to become a successful classroom teacher.

However, I heard “diabetes” entering my second year of teaching. My co-teacher and I were told we were going to have a child who was recently diagnosed with Type 1 Diabetes in our classroom. I cannot speak for my co-teacher, but my stomach felt very uneasy. I was worried to take on such a huge role with something I knew very little about. Many thoughts ran through my head. How do I care for a child with diabetes? Will I know what I am doing? How are we supposed to keep him safe? And most of all, how do I give him 100% of my care when I have 19 other 4 and 5 year-olds who need the same?

Unlike many public primary and secondary schools, preschools are not usually staffed with nurses, so my co-teacher and I were going to take on the nurse roll. We were in charge of keeping our little friend safe, and really when it comes down to it, alive. His parents put their trust in us to care for their child, while they themselves were still learning about caring for Type 1 Diabetes.

Not only did we have to take on this “nurse” and care giver roll, but we also had to learn to balance diabetes and the rest of the class including Henry. We were still the teachers, we were still Henry’s teachers.

Fast forward two years later, as I near the end of my time with my sweet little Henry, and all the care is now routine. But that wasn’t always the case. I think back to the first couple weeks of school, when we were learning and reading about Type 1 Diabetes. For instance, a typical day for all involved includes the following (keep in mind there is no such thing as a typical day in the diabetes world🙂

  • Between 5-10 finger pricks a day
  • Delivering insulin every day and multiple times a day
  • Counting carbs for lunch, snack, or a special cooking activity
  • Doing a pre-bolus (insuin given before a meal) for lunch along with a combo bolus (insulin given over a duration for high carb and fat foods like pizza)
  • Giving rescue carbs (glucose tabs or juice box for a low at any given point)
  • Correcting a high with an EZBG (more insulin) multiple times during the day
  • Communication with parents via group text, emails, phone calls when needed
  • Countless checks on his monitor, our personal cell phones, or his iPod

I’d say after two years, we have this balancing act figured out pretty well. There are still times where I find myself explaining to another 5 year old what a glucose tab tastes like (a gigantic smartie) or why Henry gets to have a juice box or cheese stick at random times during the day. This is all part of the balancing act. As a class we all come together to accept diabetes as part of OUR norm. This is just part of our day. The kids see us do blood checks, give rescue carbs, and give more attention to Henry at some parts of the day. But do you know what? They don’t think twice about it. They may ask a question or two, but curiosity is what makes our children learn and grow.

As I sit here typing this post, constantly checking my phone to see what his numbers are during rest time, ready to text my staff at any point, it makes realize that I have come to many conclusions and have my own thoughts about diabetes.

First of all, I love FREE FOODS (a no carb food)! The best food there is when you don’t have count carbs, knowing Henry loves them as well. To this day, my heart will always skip a little beat when I see double arrows down on his CGM (continuos glucose monitor). Pizza day is a bittersweet because I know there will always be a high and then there will most likely be a low. Exit signs, pointing with their arrows, will always remind me of Henry and his CGM (a devise used to read his blood glucose with arrows showing which direction his blood sugar is headed). Lastly, I thought Type 1 Diabetes was going to diminish my ability to teach the class, but really it made me the best teacher, caregiver, nurse, friend, and advocate that I could possibly be.

I will not look back and remember the scary lows or the difficult math (not my strong point) when it comes to figuring out carbs in a given meal or treat. I will not look back on the extra time it took to try and fully understand Type 1 Diabetes. I WILL look back and remember that little boy who took every finger prick like a champ, who made lows not so scary, who gave me the giggles when I was stressed out, who was so excited to see his blood glucose numbers (when sometimes I was dreading it), who, in all reality, gave me a whole new outlook on life. No, I will not remember Henry as the child we had with Type 1 Diabetes. I will simply just remember him as my sweet little Henry. A strong little boy who didn’t let diabetes define who he is.

exit signAlexis Johansen teaches in the 4 and 5 year old room at the University of Northern Iowa Child Development Center with her Bachelors in Early Childhood Education. She recently just finished up her third year teaching. Alexis lives in Cedar Falls, Iowa with her newly married husband and her adorable dog that loves to cuddle! When she isn’t at school with her kiddos, she enjoys reading, running, and being crafty at home.

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Lexie and Henry 

When Type 1 Knocks on Preschool’s Door

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Parents of young kids with T1D know that sweaty palm, nervous gut feeling of leaving their child with someone new, especially someone new to diabetes. Handing over the diabetes equipment means handing over trust of your child’s consciousness, and over time, his or her long term health. It’s never easy to do this, but for two years, we worked with two amazing preschool teachers who share their experiences of learning about Type 1 and managing it in a preschool classroom. “When Type 1 Knocks on Preschool’s Door” is by Jessie Blohm.

It has been two years since diabetes knocked on the classroom door. Two years ago we were, admittedly, afraid and unknowledgeable. Two years ago, I could have told you the difference between Type 1 and Type 2 only by way of saying that Type 2 was the kind that elderly people can develop and a result of the obesity epidemic. Other than that, I had no idea what the difference was or how much we would learn in two short years.

Insulin, units, blood glucose (BG), meter, lancet, pump, bolus, combo bolus, pre-bolus, etc…the language alone was enough to make my head spin. How were we going to learn all of this in one week, so that we could keep Henry safe at school? It didn’t matter how, it just mattered that we would. A couple evenings of reading The First Book for Understanding Diabetes and a crash course in testing with the meter and we were on our way. Well, not quite that easily, but it did happen that quickly.

I believe that there were 4 key factors that made Henry’s time in our classroom so successful and relatively stress free for his parents.

#1. Caring and attentive parents

Henry’s parents were willing to meet with teachers before the start of school with step by step handouts, powerpoint, scales, cheat sheets— anything and everything they could think of to inform two lead teachers and a handful of college students on how to best care for their son. Rachel and Matt were able to answer questions when we had them, walk us through as new situations like priming the pump or delivering a combo bolus arose. They stressed the importance of realizing that there was no “normal” situation when “managing” diabetes and that so many factors play in to Henry’s numbers on any given day. They gave us a list of our typical snack foods as well as the portion sizes and carb counts, taught us how to weigh foods for lunch, and count carbs in each serving size. We used those cheat sheets religiously and by the end, we were able to take a cooking activity for the classroom, modify the ingredients slightly, and figure out how many carbs were in it so that we could give Henry the correct amount of insulin and most importantly, that he was able to participate in the same activity that the rest of the children were.

#2. Lots of checking…and double checking, and sometimes even triple checking

Before going outside for large motor, “Henry, let’s check you.” While at group, “Anna, will you check the CGM?” While getting ready for lunchtime, “Lexie, will you text Rachel and Matt to check if that amount of insulin sounds correct, it seems high.” Preparing for a center time cooking activity, “Double check my math on this portion size for the cooking activity, do you get the same numbers that I do?” The CGM needs calibrated, “Two different checks (pokes) this time, Henry.” In the beginning, this was a complete tag team effort between us as co-teachers, standing shoulder to shoulder at the counter as we figured the carbs for his lunch/snack/activity. After two years, it was like a well choreographed dance, we were able to have a quick conversation about his numbers that day, make a guess on how lunch/snack/activity would effect his blood glucose, and move between the different roles as lead teacher/lead caregiver with ease….but it took a lot of “checks” to get us there.

#3. Trust

It had to have taken an amazing amount of trust on Henry’s parents behalf to hand over his backpack each day and trust that we were going to stay on top of his numbers, catching any highs or lows from a new breakfast food, our lunch menu, and his activity level. Trust in our student staff and their training when we were out of the room or in a meeting. Trust in the CGM in order to avoid an unnecessary finger poke. Trust in the Dexcom app and knowing that there were 4 sets of eyes randomly checking his numbers throughout the day and sending a precautionary text to whomever was with Henry (teacher/staff), just in case they hadn’t caught it.

#4. Acceptance

In our classroom, we call everyone “friends” and we work hard to promote acceptance, resilience, and kindness. After diabetes knocked on the classroom door, we had a new topic to cover. Sugar. Much like we begin every school year creating that classroom community, we hit all of our usual likes/dislikes, how we all are the same and how we are different, etc. It was decided that we all liked sweet treats and we all understood that too many sweet treats would give us a tummy ache. However, for Henry, his body needed help with the sugar and he had to wear the pump so that it would keep giving him medicine in order to be safe. The children were so accepting of this! They would occasionally take an interest in watching us check Henry’s BG, ask an occasional question, or tell us they heard a beep from the pump, but more often than not, they didn’t even notice anything different! Henry was resilient, could go wash his hands, check his BG quickly, and return to his play with little interference, it was just accepted as part of the classroom routine and community. In all honesty, acceptance, resilience, and kindness are probably the best qualities in young children, and the rest of the class made it easy. I only hope and pray that the rest of Henry’s years of school are equally as accepting and kind to him.

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Jessie and Henry

Jessie Blohm is a teacher and a mother, holding her Masters Degree in Early Childhood Education from the University of Northern Iowa, while earning her Mother of 3 degree at home in her partially remodeled farmhouse in Reinbeck, IA. She lets her kids run barefoot and would rather pick weeds in the garden and drive kids to soccer practice than cook any day.

Diabetes, from Clinical to Personal

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In this guest post, Rhonda Morgan, a registered nurse, describes how type 1 patients in diabetic ketoacidosis (DKA) and severe hypoglycemia were treated in the emergency department in the 1970s and 1980s. Rhonda’s understanding of type 1 diabetes changed in 2014, when the clinical became personal.

I began my career as a registered nurse in 1974, the summer I graduated college and passed my board exams. This was one of the sundry times there was a nursing shortage, so I started to work as a new graduate in a very busy emergency department (ED) of a 500+ bed hospital. It was grand. The ED affords ample opportunity to see just about everything. And we saw a lot of patients with diabetes in those days, primarily adults in DKA. Another frequently seen diabetic-related emergency was hypoglycemia (“insulin shock,” as it was known then), and these patients all too often presented to the ED, unconscious, with seizures, and with a very low blood glucose. Many doses of D50 (dextrose 50%) were administered empirically to known patients with T1D presenting with these symptoms. Likely no state of unconsciousness is as easily and instantly reversed. Occasionally, a child would present to the ED and be diagnosed with type 1, but children were always admitted to pediatrics, and never hung around in the ED for very long.

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Rhonda Morgan, RN in the ED, 1981, preparing an IV

The adult type 1 patient in DKA was one of my favorite patients to manage and care for in the ED, because the course was so dynamic, and one could see the favorable results of treatment over a short period of time. One of the really great ED physicians, with whom I worked for many years, would elect to keep these patients in the ED and treat them, as opposed to admitting them to the hospital, if they did not have insurance. This was much more financially feasible for the patient and family, plus the patient had constant care.

In those days, we had no bedside (point of care) blood glucose testing. We tested for glucose in the urine of our patients with diabetes using clinitest tablets. The clinitest method involved shaking a tablet out of the bottle into the test tube (because you could not touch the tablet with your fingers), adding 6 drops of urine and 10 drops of sterile water and waiting for the chemical reaction to occur. The contents of the test tube would fizz and generate heat, and then change color. After 30 seconds, one would compare the color of the liquid in the test tube to a color chart to determine the corresponding blood glucose. The test was very imprecise, but none the less we used this method of testing for glucose, along with blood tests that were sent to the lab, and took an hour or more to get the results.

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A few years later, test strips were available, but again, this method tested for glucose in urine and was not a direct or current measurement of blood glucose. DNA recombinant (Humalog/Novalog) insulins and basal insulins were not yet developed. We had regular insulin, NPH, Lente insulin, and ultra-Lente, the last two being longer-acting insulins. All were bovine origin.

Later in my career, I worked in critical care as a clinical specialist and helped institute computerized, and then later, web-based algorithms to manage hyperglycemia of critical illness, prevalent in both diabetic and non-diabetic patients in the ICU.

So, I have been around a lot of folks with diabetes. I have managed treatment and cared for of a lot of folks with diabetes in DKA, and in critical illness situations. However, I knew nothing about how to manage and oversee the maintenance of T1D until my grandson, Henry, was diagnosed with T1D at the age of 3.

Then, I saw the “other side” of diabetes— the personal side, not the clinical rescue, critical, immediate treatment regimen, but the everyday, every night, day-in, day-out routines that must be undertaken to keep him safe in the immediate, and to offer the best odds of avoiding the long term complications of diabetes. This side of diabetes management is just as critical as the side of diabetes care with which I was so familiar.

Our entire family had a learning curve that was fast paced. It was not easy, and it is not for the short term. It is for life. Henry was started on multiple daily injections at diagnosis in March 2014. Needless to say, this approach was filled with anxiety and unpleasantness for all. Thanks to his smart and advocating parents, he got his insulin pump and continuous glucose monitor in late May, just shy of 3 months into his life with diabetes. The pump ushered in a new learning curve, and the continuous glucose monitor gave us an eye on previously unseen data.

How I wish Henry did not have to live his life with diabetes, but he does.

I think back to 1974 and putting those 6 drops of urine in the test tube and feeling the warmth of the chemical reaction in my hand, and I contrast that to a direct blood glucose value we get multiple times daily in just seconds, CGM data transmitted over an iphone around the world, and insulin delivered with a pump, and I am confident Henry can have a happy, healthy productive life.

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Henry and his Nonna in 2014

Richard’s Diagnosis Story

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Diagnosis stories are powerful teaching tools that help people learn to recognize the symptoms of type 1 diabetes. For the person diagnosed with type 1 diabetes, a diagnosis is the day his or her life changes and goes forward. Semisweet is sharing “Richard’s Diagnosis Story” in his own words. Richard has been living with type 1 diabetes for over 70 years. In 2006 he joined the diabetes online community, where people were fascinated to hear Richard’s story of living with T1D in the 1940s and beyond. In 2010, Richard published his autobiography, “Beating The Odds: 64 Years Of Diabetes Health.”

Richard, diagnosed at age 6, September 1945

I was born in 1939, in Roanoke, VA, and I had several illnesses before my fifth birthday: three different kinds of measles and my tonsils removed. When I was five I had chicken pox and mumps, and while recovering I began showing the classic symptoms of diabetes— excessive peeing and drinking so much water. My parents took me to three different doctors, but they did not recognize my symptoms, so there was no diagnosis. I lost my appetite, and refused to eat. I just wanted to drink.

One doctor prescribed a tonic that was supposed to restore my appetite. I still remember the bad taste and tall glass bottle filled with dark brown liquid. It was like the snake oil medicine that we have read about from the past. The tonic did not help at all. It probably made my condition worse because it contained sugar. By the time we saw a fourth doctor I was very weak, and had lost a lot of weight. My ribs were very noticeable when my shirt was removed. The fourth doctor recognized my symptoms, and took a blood sample in his office. The sample was sent to a lab, and we waited a few days before returning to his office for the results.

His office was on the second floor of a building on Main Street in Salem, VA, and I struggled to slowly walk up the long flight of stairs. My father was carrying my three year old sister, but I was too big to be carried. In the doctor’s office, my mother and I sat in chairs while my father stood behind us, still holding my sister. I do not remember the doctor’s face, or his words, but I’ve never forgotten my mother’s pale and frightened face. In September 1945, a few days after my sixth birthday, we were told that I had sugar diabetes. I was hospitalized the next day, and don’t remember much about the stay, except for the injections and the blood that was collected. Insulin, taken from pigs or cows caused me to gradually regain my appetite, and I stopped losing weight. By the time I was home, I looked like a human being again, and my strength was very much improved.

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Richard and his family a few months after his diagnosis

While in the hospital, I was treated by Dr. Davis and he became the doctor for my whole family. I saw him every six months, and he took blood samples, testing them in his office lab while I waited. My blood sugar was always high, but I don’t recall him ever mentioning numbers. We were not concerned though because we did not know about the complications that might occur with my eyes, kidneys, and other body parts. One shot per day, one urine test, large portions of food, and no worries. Ignorance was bliss.

There were no meters for testing blood sugar at home until the 1980s, almost forty years after my diagnosis. We tested my urine at home, every morning, but the procedure for doing that was very awkward. The first thing I did each morning was to pee in a cup. Some Benedict’s solution was placed in a large test tube, and several drops of urine were added. The test tube was placed upright in a container of water on our stove. When the water had boiled a while, the test tube was removed, and the color of the solution was observed. The original color of the Benedict’s solution was blue. If the solution containing the urine was blue, after boiling, then there was no sugar present in the urine. If sugar was present in my urine, then there would be colors: green, yellow, orange, brick red, or brown. Green showed a low amount of sugar, brown showed very high sugar.

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testing blood sugar with Benedict’s solution

It was nice that there was only one injection each day before breakfast, but there were no fast and slow acting insulins, so control of my blood sugar levels was not good at all. The animal insulin was a 24 hour insulin, so the morning urine test result determined the dosage, but urine tests do not approximate blood sugar well. The glass syringe and metal needles were kept in alcohol, and sterilized with boiling water on the stove once each week. We had our own well, and the water contained limestone deposits. After boiling, there was a white film on the needles and syringe, so we had to use a whetstone to remove the deposits. The limestone frequently clogged the insides of the needles, so we had to push a small wire through the needles to unclog them. If the deposit was not removed it was difficult to push the needle into my skin. The needles were almost three quarters of an inch in length. I was supposed to push the needle into the muscle on top of my legs, or on my arms. My father gave me my injections until I was ten.

During the night I would sometimes have hypos. Some of those hypos became seizures. I would thrash around during my sleep, my teeth clinched, my muscles would become drawn, and I was almost unconscious. Mother poured small amounts of the sugar water they kept nearby on my lips, until I had enough in my mouth to partially awaken me. Then I drank the liquid more freely. I was always drenched with sweat, and very weak after a seizure. My body was sore the next day and the sugar water caused my urine test to show high the next morning. I continued to have seizures for many years, but they occurred less frequently when I was older. There was never any effort made to call an ambulance. Perhaps it was because the nearest hospital was at least 10-15 miles from our house, and I doubt that the paramedics in the ambulance had glucagon injections. Home care was probably the best solution. I think my mother saved my life many times during the years I lived at home.

Dr. Davis told us that I should not eat sugar, but no other instructions about an appropriate diet were given, so we didn’t know about carbohydrates. We lived on our little ten acre farm, and we had cows, chickens, pigs, and a horse. There was a very big garden, and an orchard. We bought very little food at the grocery store, so processed food was rarely part of my diet. Our own milk, eggs, vegetables, and fruit were readily available. We had meat from the chickens and pigs. Mother canned food each summer and fall. I helped my father with the farm work, and I was very hungry, so I ate big portions at every meal. I ate all the same food that my parents and sister ate, except items containing sugar. Mother used saccharin to sweeten the pies, cookies and cakes that she made for me. I ate lots of bread, potatoes, and other things that were not good for me, but we thought all foods were okay, if they did not contain sugar.

My parents did the best they could for me during my childhood and Dr. Davis gave no instructions that helped. We did not know there could be potential problems, and I led a rather normal day to day existence. There were no health problems with my diabetes throughout my childhood, despite my very irregular blood sugars. I have often wondered why I did not have DKA back then. Was something protecting me? All the fast acting carbs I ate each day (without correction boluses like I take now) must have kept my blood sugar very high. I’m sure my parents were devastated by my diabetes, and not knowing how to care for me. My parents raised me in much the same way that they were raised in their mountain homes. They were raised on farms, and they loved that kind of living.

When I talk to parents of T1D children diagnosed today, I advise them to join online diabetes support groups for parents. Children with Diabetes, created by Jeffrey Hitchcock, and the many parents’ support groups on Facebook are very good sources of advice and information for parents. Getting support from experienced parents can help so much! There are books that are available, but I think the online community is best. Having T1D children meet other children in their communities is a very good idea. Diabetes camps in the summertime are an excellent idea. Attending the Friends For Life conference in Orlando, FL is another source that I have seen work so well with children who are type 1.

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Richard at 76, having lived with T1D for 70 years

If you’d like learn more about Richard’s life with type 1 diabetes, then check out this video interview where Richard shares his experiences with Daniele Hargenrader. Richard was also interviewed about living with T1D for over 7 decades on Diabetes Mine. Richard will also be a speaker at the 2016 FFL conference in Orlando, FL. You can follow Richard on Twitter @Richardvau157.

Team Pancreas: Caregivers Matt & Rachel

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How would you describe your child’s condition?

Matt: Henry has type 1 diabetes. This means that his entire life is centered around the fact that his body does not produce the insulin he needs to process glucose, so we check his blood sugar about ten times a day by poking a small needle into his finger and adding that drop of blood onto a meter that tells us what his BG (blood glucose) is. Depending on what the number is, we give him insulin, sugar, or wait. This means that we deal with low blood sugars, which are potentially, immediately, fatal; high blood sugars, which can have drastic, long-term consequences for his life; or “normal” blood sugars, which help keep him healthy. We get up every two hours every night to help maintain his blood glucose. Two weeks ago, Henry looked at me and said, “Diabetes is a hard life.” I agree.

Rachel: Our son, Henry, has an autoimmune disease, type 1 diabetes. Something triggered his beta cells to stop producing insulin, so he must take subcutaneous insulin for the rest of his life, test his blood glucose 8-12 times a day and always account for the carbs he eats with insulin. There’s never a break from type 1 diabetes, because the person with diabetes or the person’s caregiver/s is trying to replicate a job the pancreas once did.

What care for your child is required, and how do you and your partner divide this care?

Matt: We make sure that he gets enough insulin to cover the carbs (sugars) he eats so that his blood glucose does not get too high and cause damage to his organ systems. We also make sure that his BG does not drop to a low level that could result in seizure or death. We count all of the carbs he eats and program his (miraculous) insulin pump to keep him in balance. We also change his pump site every two to three days, as well as his constant glucose monitor (CGM), another amazing device that keeps us updated on an estimate of his BG. Rachel definitively manages the difficult logistics of this care. She deals with insurance companies, refills at the pharmacy, and talking to the reps at Animas (insulin pump) and Dexcom (CGM).

Rachel and I both deal with the daily stresses of handling diabetes. We both count carbs, take BG readings, get up in the middle of the night and evenly split the duties of changing Henry’s pump and CGM sites. Henry has developed a pretty nasty allergy to the tape that holds both of these machines onto his skin, so we have to take a lot of precautions to make sure that his exposure to them is minimized. Rachel reached out to the diabetes online community and found people who helped us come up with solutions when our docs had basically given up and asked us to go to multiple daily injections.

The best balance that we have, in terms of day-to-day care, is that Rachel is very good at keeping track of what Henry needs medically and practically; she amazes me with how much she has learned about diabetes and its care—  and I am helpful in the ways that I try to create some distance from a life with diabetes and a “normal” life for Henry. I’m probably more likely to encourage us to get ice cream or wait to change a site— this balance only functions because of how hard Rachel works.

Rachel: In the wise words of Kenny Rogers, “Know when to hold ‘em, /  Know when to fold ‘em / Know when to walk away / Know when to run.” I know when to hold ‘em, which comes in handy with the rigor and attention counting carbs and dosing insulin requires. Matt knows when to fold ‘em and let Henry live the life of a five year old with birthday parties, extra ice cream, and a day longer with a site. Henry will need both of these skills as he learns to live and manage his diabetes. Balancing diabetes is an art and a science, so I’m the science while Matt’s the art. Matt and I both know when to walk or  run away from a negative comment, failing site, or excessive carb scene.

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Team Pancreas

How has being a caregiver changed your relationship?

Matt: I don’t think it’s changed us fundamentally. We don’t always agree about everything to do with Henry, but we always talk about why we think a certain action is best in the certain moment. Ultimately, we are both focused on making sure that Henry is safe and protected. Chronic conditions are definitely an added stressor, and I’m sure that we get a little snappier at 3:00 in the morning, but we are both committed to each other and to caring for Henry.

Rachel: A lot, but a little. A lot because we are now caregivers for our son, who has a chronic condition, but not a lot because we decided to become partners and then parents together long before diabetes entered our lives, so we’ve mostly figured out how to handle stress and difficulty. A day to day difference is struggling with time, because everyday actions, such as preparing for a trip or eating at a restaurant, are now more complex and require discussion, preparation, and planning. We have to depend on each other more.  

Describe a caregiver technique you and your partner do differently.

Rachel: We both do really hard things. For the past 18 months I’ve put in Henry’s pump site, which feels like I’m stabbing him with a giant needle. Henry anticipates site changes, and it’s just awful to know that I’m causing my child physical pain, even if it’s for treatment. When Henry asks something like, “Will I have diabetes when I’m a grown up?” Matt can answer this question honestly and have Henry laughing within a few minutes, whereas I have to leave the room because I don’t trust myself to answer without getting choked up.

Matt: We have split things up, but we talk or text at least two or three times a day about his care when we are both at work. Changing the site of Henry’s pump is stressful because of the precautions we have to take with his skin and because he dreads them. We put Lidocaine on his skin to decrease the pain but they still worry him. I prep the area on his skin and get the pump primed to administer insulin and hold him while Rachel actually inserts the pump.

In twenty words or less, describe your partner’s caregiving superpower.

Rachel: Matt’s superpower is levity that inspires patience and laughter, needed in the shadow of a wrong number at the right moment.

Matt: Rachel’s superpower is her love for Henry and how this gives her a laser-like focus on keeping him alive.

Caretaking for Two

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It’s Diabetes Awareness Month, as well as National Family Caregivers Month, so Semisweet is sharing its second guest blog, an interview with a parent caregiver, Angie Ashe, mother to Elliot and Fiona. Elliot has Arthrogryposis and Fiona has Amniotic Band Syndrome.

Elliot & Fiona

Elliot & Fiona

How would you describe your children’s conditions? 

When my first daughter Elliot was born, her physical disability was a delivery room surprise. When we adopted our younger daughter Fiona two years later, her physical disability was completely planned. Because of our experience with Elliot, my husband and I deliberately set out to find a daughter who could benefit from all the great specialists we met along the way. Elliot has Arthrogryposis, which means that her limbs did not develop properly in utero. She has very limited muscle and range of motion in her limbs. She also happens to be non-verbal. Fiona has Amniotic Band Syndrome, which resulted in an underdeveloped foot that had to be amputated and missing digits. She also happens to talk non-stop. Neither girls require any medication or special diets. Their needs are mostly physical.

What care for your children is required, and how do you and your partner divide this care?

As their caretaker, I do a lot of heavy lifting. I don’t mean that metaphorically. I lift a 45 pound 5-year-old (who often fights being carried if it means she’s going to bed or the bath), a 35 pound four-year-old, and a wheelchair in and out of my trunk all the time. It took some getting used to, but I have a pretty strong back and no need for a gym membership. Most parents get the privilege of fighting with their kids, telling them they’re too old to be carried. I get the privilege of helping my five-year-old walk around in her leg braces, a feat we were never sure she’d accomplish. I’ll take all the work involved in helping her up and down the structure at the playground just to hear her giggle when she goes down the slide.

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My husband Rob and I both work in our family. He works full-time as a Television Editor. I work as a Children’s Librarian, but I only work part-time for the kids. Because of my schedule, I am the parent who takes the girls to every doctor and hospital appointment. When your children are as complicated as my children, that equals a lot of appointments. There’s the lower orthopedic surgeon, the upper orthopedic surgeon, the cardiologist, the neurologist, the neurosurgeon, the urologist, the ophthalmologist, the developmental pediatrician, and the orthotist. Let’s not forget the offices we’ve visited just for fun, like the audiologist and the optometrist. Plus, the offices all kids have to go to, like the pediatrician and dentist. In between all this, there have been many visits to the hospital’s hand clinic for nighttime splints to be made and adjusted and the casting clinic for serial casting of the legs. Plus, there are the many, many hours spent in OT, PT, speech, social skills therapy, and behavioral therapy.

Having listed all these, don’t think for a second that I dread any of this. I actually like taking my girls to their appointments. I show up early with snacks and games for everyone. I’m that mom. If this is going to be their life, it’s my duty as their caregiver to make it fun. My kids know everyone wherever we go. The staff at all the offices are their buddies. My girls may be scared of the blood pressure cuff, but they are not scared of the nurse holding it. My job is to make sure that they know they are surrounded by friends at all these appointments. I like to think that I am surrounded by friends too. Since I have no time to just hang out with friends, I have made many of the people who work with my daughters my friends over the years.

Just because my husband misses most of their appointments does not at all mean that he is hands-off. My luxury in our family is that I do not have to deal with insurance and bills. I have never called our insurance, ever. I’m quite proud of that. It’s freeing to show up at all these appointments and never worry about how they are going to be dealt with through insurance. I’ve had times where an employee at the front desk has asked me an insurance question, and I just smile and declare that I haven’t a clue. I have to reserve so much of my brain power for all their medical info that I rather enjoy saving no space for insurance mumbo jumbo. I believe my husband likes having an important role in our medical journeys as well. I completely trust him to do all this, and he does a spectacular job. I pride myself on being an intelligent woman, but there is a beauty in being blissfully ignorant when it comes to all the back and forth between insurance. For the sake of honesty, I’ll admit that I’ve written a few letters of appeal, but it’s more fun to believe that I am free of all insurance worry.

road

Describe a caregiver technique you and your partner do differently.

One major way that my husband differs from me is that he is a homebody, and I don’t sit still well. I like to take the girls to the gym or park, if we are bored at home. He, on the other hand, never gets bored at home. I think both qualities are good to have in a family. While I can get anxious that Elliot is not getting enough exercise, I can see that bumming around the house is something that she needs sometimes. She works a lot in therapy and school, and he helps remind me that it is not going to hurt her to do nothing for a little while.

There is one area in Elliot’s life that I have never trusted my husband: her splints. Elliot got her first pair of wrist splints in the NICU. They are meant to hold her wrists in an ideal position when she slept. When she was smaller, the splints were actually putting a little pressure on her wrists, trying to help them move into a better spot. Now, they just maintain. She’s achieved a lot with splinting. If they are strapped on too tight, they can create pressure sores. If they are too loose, they will offer little benefit. For five years, I have tiptoed into Elliot’s room after she’s gone to sleep and quietly strapped each splint on. I acknowledge this is my own form of craziness, and, therefore, do not resent my husband for knowing nothing about her splints.

One big thing that I don’t think a lot of people realize about my life as my daughters’ caretaker is that it involves a lot of medical decision-making. You see, there is not one pattern to follow for any of this. There are tons of surgeries out there and tons of opinions on all of them. Every single choice I have made on my daughter’s behalf I have heard someone talk negatively about it in an online support group. The boots with the bar that helped my daughter’s club feet, those are awful, don’t work at all, should never be used on a child with my daughter’s condition. I thank goodness all the time that I have excellent research skills as a librarian and know better than to believe everything I read online. Out of the plethora of treatments, we have to pick some (or none, as some choose to do), and we have to do our best to be happy with our decisions. Luckily, my husband and I make a great team when it comes to these decisions. We’ve talked about these procedures endlessly, and we meet in the same place when it comes to our daughters’ care.

Elliot started kindergarten this fall, and I can happily say that I handed off some of my caretaker duties to her teacher and aides at school. She is part of an amazing special ed program in our city, and her transition to longer school days could not have happened at a better time. Five years of early interventions is a lot. Five years of working my butt off. Adding Fiona to the mix almost two years ago sped our household up even more. I was honestly exhausted. Right now, I am grateful that I can lay off Elliot a bit and let her just relax when she comes home from school. I still have a hard time leaving her be, but I’m getting better at it. I stretched her 6 times a day for years. I bribed her with Goldfish to take tiny steps through the aisles of Target for years. Now, I let her sit and play iPad. Nothing else. It’s nice. She’s learning to communicate with us through that iPad now too, so don’t knock the iPad time.

I’m going to be my daughters’ caretaker for life. Fiona will leave our nest one day, but Elliot likely never will. My vision of my future has changed over the years, but it’s not a bad thing. Elliot loves the ocean. She might be my key to getting that little retirement house at the beach that I always dreamed of. My job as her caretaker now is to make sure that she grows up to be someone I will love spending every day with. Elliot, Rob, and I will rock in our rocking chairs, watching the ocean, waiting for Fiona to visit and tell us of all her adventures. That doesn’t sound bad at all.

family

The Ashe Family

Parent Caregivers: Kevin & Rebecca

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It’s Diabetes Awareness Month, as well as National Family Caregivers Month, so Semisweet is sharing its first guest blog, an interview with parent caregivers, Kevin and Rebecca who are parents to Everett. Everett was born at 33 weeks, and a few hours after his birth, Kevin and Rebecca learned Everett has Down syndrome. Infants and children with Down syndrome will experience delayed milestones, like rolling over, talking, standing up, and walking.

Here’s a Facebook status that Rebecca posted last week: I was multitasking during Everett’s PT visit, and while the physical therapist was here, I was attempting to cook dinner, but Everett was using his walker, and I got so excited. Kevin and the girls got home right in time to see the firetrucks pull up. Good to know that the fire alarm works. No fire, lots of smoke, but Everett stood up on his own. We ate leftovers to celebrate.

What’s a tame little kitchen fire when your child stands up for the first time?

Everett standing up for the first time in physical therapy.

Everett standing up with the help of his walker.

How would you describe your child’s condition? 

Rebecca: My child has Down syndrome. Down syndrome doesn’t have him. It is just part of him and doesn’t define him. It is part of his person. Because of the additional 3rd copy of the 21st chromosome there are certain (daily) things that we need to be mindful of as far as health, learning, or daily living. Everett is smiling, has red hair, has DS, and loves to play with cars.

What care for your child is required, and how do you and your partner divide this care?

Rebecca: Because I was off work for almost two years the scheduling primarily falls on my shoulders. When I returned to work, I kept that responsibility since my husband works a second job to supplement our income. I make his weekly therapy appointments (averaging around 4 appointments a week). Friday is therapy free, so Friday is fun day. About once a month I try to accomplish a bigger long term goal involving support groups, advocacy, funding issues, or later life care.

What impact has being a caregiver had on your relationship? 

Kevin: It has not made it harder. It is the mindset we have chosen. It is just giving extra opportunities to Everett. In no way has it weakened our marriage.

How has being a caregiver changed your relationship?  

Rebecca: It reinforces the fact that we are a team.

Describe a caregiver technique you and your partner do differently.  

Rebecca: Kevin will carve out time and work on a skill that a therapist is asking us to do. It is direct instruction. I will normally have the kids around me and we all do it together and I just try to integrate it into our play.

In twenty words or less, describe your partner’s caregiving superpower.

Rebecca: Kevin’s superpower is his love for his children, from our first baby to our fourth baby.

Kevin: Rebecca’s superpower is the ability to keep everything going.

Cousins First, D-Cousins Second

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I helped ease my sister back onto her hospital bed when the afterbirth pains had passed. I stood over her, but she was already asleep, a grimace  of pain and sadness etched her frown, even in sleep.

Less than 24 hours ago she’d had an emergency cesarean to deliver her 33 week old twins. Baby B was showing distress. The twins where delivered at 5:06pm and 5:08pm, and whisked to the NICU. Rebecca and her husband were called into the NICU at 2:00am to meet their babies, but before she could see her babies, still in the wheelchair, the doctor asked if they’d had prenatal chromosomal testing. Twins are automatically considered high risk, so they’d had every test. She was told her son had Down syndrome before she ever got to see or touch him.

She was told how the world would see her son before she ever saw her son. When any infant or child is diagnosed with a condition, syndrome,  or disease, the parents need to grieve for the life they’d expected for their child, then, without much flourish, put that life away and show up for the life that is. Rebecca showed up. Before Everett was discharged from the NICU, he had a team of therapists waiting for in-home visits.

When Rebecca and I talk about this moment she asks, “Why wasn’t I allowed to meet my son before someone told me what was wrong with him? Why did someone tell me what my son couldn’t do before I saw him? Why can’t people see what he can do?”

Two months later, the twins were healthy and home, but my husband and I were in the hospital with our son, Henry, who was just diagnosed with type 1 diabetes. A week later, we had our first follow up at our local doctor’s office, and the nurse not so much asked as  stated, “Your son, he’s the type 1 diabetic?”

“No,” I said, thinking of my sister. “He has type 1 diabetes.”

Just like his cousin, my son has a diagnosis that will define him, but much of their battle will be for a people to see them as people first. Rebecca knew this all along. Person first language.

D-Cousins

Cousins first, D-Cousins second

About a year after her son’s birth, my sister delivered this speech to a group focused on advocacy for Down syndrome (DS).

Two. This number began popping up in my life. Two blue lines on the home pregnancy test. Two embryos. Two fetal heart beats. Two tiny bodies growing inside of me. Two heads, two hearts, two souls, two babies to join our other two children at home. Everett and Vivienne were born two minutes apart. At two in the morning, only seven hours after they were born, we were asked what chromosomal prenatal testing we did.

I am a planner, so we did every check, test, and measurement throughout the entire high risk pregnancy. Apparently because they are twins, Vivienne “covered up” many of the markers all the specialist and doctors would have looked for with Everett. Before I got to even see or hold Everett, one of my two perfect babies, I was told what was “wrong” with him.

Days later we were shown his karyotype. A karyotype is a picture of a person’s chromosomes. Instead of two 21st chromosomes there were three. Everett has Down syndrome.

The next day was Christmas Eve, and I as discharged from the hospital, but I left my two premature babies in the NICU. They were born two months early, but the babies got stronger, and so did I. Daily I would visit them, but I was torn between the two isolettes.

Not having a prenatal diagnosis of DS forced me to hit the ground running. I had planned for my son to have one life, but now I was planning for him to have another. I looked for specialists, services, groups, funding, schooling, and opportunities for my son.

When Everett was two months old he started receiving services through our state’s early intervention services and as a two person team, we created plans, goals, and outcomes for Everett. When we came across an issue like feeding, sitting, or playing, we problem solved together. Two heads are always better than one.

During the peaceful moments right before bed I think of my two perfect babies and how they came into the world too early. I take their hands or caress their cheeks and I think of all of their cells and chromosomes in their bodies that make them who they are. I can imagine Vivienne’s Karyotype: the two 21st chromosomes next to one another. Then I think back to the time in the NICU when I was alone and scared, when the geneticist displayed Everett’s Karyotype to my husband and me. I remember those three 21st chromosomes lined up next to each other. Now I know that three is just as good as two. Maybe three will be my new lucky number.

Rebecca and Everette

Rebecca and Everette

Amy’s Diagnosis Story

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Diagnosis stories are powerful teaching tools that help people learn to recognize the symptoms of type 1 diabetes. For the person diagnosed with type 1 diabetes, a diagnosis is the day his or her life changes and goes forward. Semisweet is sharing “Amy’s Diagnosis Story” in her own words.

Amy, diagnosed at age 29, February 2004

It was in Manhattan in the fall of 2003 when I had dinner with my good friend Sam who was diabetic as a result of a bout of pancreatitis a few years before. It was in jest that we decided to check my blood sugar. We’d had steak and potatoes and bread and several glasses of red wine, followed by a rich chocolate cake with sugary espresso. We were laughing at how even a “normal” pancreas would probably be overloaded by a meal that rich, but neither of us expected anything out of the ordinary. My blood sugar came back at 195. We chalked it up to the rich meal we had just eaten and laughed it off, and I tried to forget about it.

Amy a couple months prior to diagnosis

Amy (center) a couple months prior to diagnosis

In the next few months my life underwent a major transition when, after years of struggling to get control, I finally gave up drinking altogether. I had my first sober Christmas and New Years and was taking it day by day in a whole new reality. By February I had lost 20 pounds, which I was thrilled about and assumed was a result of a whole lot of beer weight melting off. Sometime in the middle of the month I started noticing fatigue and a persistent thirst and I very quickly lost another 10 pounds. Then one day on the way to work I literally had to stop on the subway stairs because I was too tired to make it up to the street. I knew in my gut that something was really wrong, and I flashed back to the night with Sam and the peculiar blood sugar. I was terrified to find out what might be going on. I had no health insurance, no money, and my entire family was 2,500 miles away, but the next morning I walked to the urgent care clinic on Atlantic Avenue and signed in to see the doctor.

I was shown to an examination room and was joined by a nurse who asked me what was happening. When I told her my symptoms and about the sugar of 195, she got the doctor to come in. The doctor assured me that I shouldn’t worry, that a diagnosis of type 1 diabetes in someone my age of 29 was very unusual and that the 195 had probably been a meter error. But just to get peace of mind we started by checking my sugar with their meter. When the meter read 305, my heart stopped. The doctor wrote me a note on her prescription pad and told me to go across the street to Long Island College Hospital emergency room and give them her note, with instructions to put me at the top of the list and get me admitted right away. Within an hour I was in the intensive care unit.

A week later I was sent home 25 pounds heavier armed with needles, insulin, a glucometer, and no idea how to adjust to life as a diabetic. My mom flew in and stayed with me for a few weeks as we learned to count carbs, calculate insulin doses, and wake up to check 3 am sugars. Leaving my apartment felt like a major undertaking (with a cooler for my insulin in tow) and I will never forget the first low blood sugar with the sweating, disorientation, and loss of brain power leaving me helpless. I was unsure that I would ever again feel care free, independent, young, or healthy.

Although being newly sober when I was diagnosed was overwhelming, I now see it as a blessing. Getting sober requires surrender to a new way of living and complete willingness to accept what comes as a result. The spiritual strength that I was finding in recovery was key in transitioning to life with diabetes. Now, 12 years after diagnosis and 12 years sober I see the two as one connected event that taught me to cherish my health, to be grateful for each day, and to strive to live a purposeful and joyful life. Managing diabetes can feel like a full time job, yet I have been able to manage it through graduate school, a career, and two pregnancies and healthy babies.

amy marriage

8 years after diagnosis

Wanda’s Diagnosis Story

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Diagnosis stories are powerful teaching tools that help people learn to recognize the symptoms of type 1 diabetes. For the person diagnosed with type 1 diabetes, a diagnosis is the day his or her life changes and goes forward. Semisweet is sharing the diagnosis story of someone who’s lived with T1D for 53 years. Here’s Wanda’s Diagnosis Story in her own words.

Wanda, diagnosed at age 12, December 19, 1962

About two weeks before Christmas in 1962 I developed a tremendous thirst and along with it, numerous trips to the toilet to pee. This was not immediately noticeable to my mom, but after a week of this, I required a parental note so that I could be excused from my class to go the bathroom, which was an embarrassment for a twelve year old.

My mom’s initial thinking was that I had a bladder infection, so thankfully she set up an appointment with our family doctor for the following week. By the time of the appointment, I was drinking (and peeing) over 1 gallon of water, plus other fluids, each day. I had a huge appetite, but was listless and quickly losing weight, almost 20 pounds in 2 weeks. Our doctor did a quick urine test in his office and diagnosed me with type 1 diabetes, which was called Sugar Diabetes at the time. I was twelve years old and in Grade 7 when I was diagnosed with type 1 diabetes.

I was admitted into the children’s ward of the local hospital and spent one month in the hospital. I remember being worried I would miss Christmas, but the doctor said I could go home for Christmas day if I returned in the evening, which is what we did. I was in hospital for about 4 weeks as I learned the complexities of diabetes care. They also figured out how much insulin I would require to manage each day. Glucose testing was mainly done with Eli Lilly urine testing strips, which certainly weren’t as accurate, but gave you idea if you were in trouble. There was no sliding scale, and pumps weren’t yet invented. I measured food in “exchanges” and ate the same amount every day, so 1 ounce of meat was 1 meat exchange a slice of bread was a bread exchange, etc.

Wanda 1 year after diagnosis

Wanda 1 year after diagnosis

The diabetic care back then was a bit of a nightmare, initially. I had a stainless steel needle that my mom sharpened on a matchbox (the gritty strike edge), and she then sterilized by boiling it in a strainer along with a glass syringe. She did this every night so I was ready for my single shot in the morning. I took snacks to school for mid-morning and mid-afternoon, as well as my carefully measured lunch. I was on the school track team and also played field hockey, so if I needed extra sugar, I drank some juice.

By the time I was 19 we had disposable syringes and needles available at the pharmacy, but with the appearance of recreational drugs on the scene, I would get a hard time when I purchased them, so I had to show them my medical card stating I was diabetic. I got my first home glucose-testing machine when I was in my thirties, and it was about the size of a paper back book, but still fit in my purse. It cost about $250 and was not covered by our medical plan at the time. Thankfully, managing diabetes has gotten easier.

There was NO history of type 1 diabetes in my family, so no one was on the lookout for it. The signs are great thirst and consumption of liquids, resulting in increased urination. Fast weight loss and lethargy come quickly afterwards. I lost weight two weeks after the symptoms appeared. A simple blood glucose test can diagnose diabetes.

Wanda on a Caribbean cruise, having lived with T1D for 51 years

Wanda on a Caribbean cruise, having lived with T1D for 51 years

Here I am­— 53 years (and still counting!) after diagnosis. I really have 2 jobs in life: one is regular life, school, employment and the other is managing my diabetes. It makes for a busy schedule, but I am still here, enjoying the results of good management and great medical care. I have travelled the world: Australia, England, much of Europe, Hawaii, the Bahamas and many of the U.S. States, without a single incident. May every newly diagnosed child take heart; there is a great life ahead. You just have to believe it and go for it. Diabetes doesn’t have to run you; YOU manage IT!