IN THE BEGINNING…
You would think this marking our one year anniversary that the story would start a year ago. However, I think that the story starts over six years ago, when I found out Julie was pregnant with our baby girl. Being an overgrown boy, I didn’t know how I was going to handle being a father to a girl. What would I do with a girl? What would we have in common? How would I bond with her? All these questions and our girl was still months from even being born.
Fast forward several years and I will say, unequivocally, that Zoe was the daughter that I was meant to have. She is definitely a girl. She wears dresses, paints her nails, and draws cute little hearts on things. However, she is very easy for me to get along with and we have tons in common. She rides on roller coasters with me, she catches frogs, she follows me on her scooter while I skateboard, and I love her with all of my heart. But… I am her father and there are things that are best left to her mother.
HAIR
One time nanny and family friend, Jenny, once took Zoe to get a haircut. Julie wanted the split ends removed and her hair tidied up a little bit. Instead, as Julie was trying to get her grow out, Zoe’s hair got significantly shortened. To this day, I still feel sorry for the interrogation that Jenny received from Julie.
“What did you tell her before she started cutting her hair? Were you watching when her hair was getting cut? Did you say something to stop it?” This went on for several minutes. Right then and there I decided that, as Zoe’s father, there are some things best left to her mother. This does not give me a pass to avoid the difficult conversations but when it comes to hair, make up, fashion, and female body parts - Julie is in charge.
THE WORST TIME OF NIGHT
I run the night time schedule. I want the kids in bed on a school night at 8:30. In my ideal world, I would be watching Sportscenter at 8:31. Sadly, that’s not how it works. I have the best of intentions of getting the kids to bed on time. I usually do get them in bed close to 8:30. Some nights they stay in bed. Some nights they don’t.
“I need another snuggle.”
“I’m thirsty.”
“I can’t fall asleep.”
The excuses are endless. I have to accept that no matter how hard I try there is a half hour period of being on call between 8:30 and 9:00. So, it was a year ago that I had put the kids to bed and I was in my bed reading my iPad. Zoe entered the room and announced, “My bagina itches.” I was too tired to laugh at her mispronunciation of the word “vagina” and lowered my iPad, turned my head in the direction of Julie and bellowed, “JULIE!” Without even waiting for her to respond I lifted my iPad back up and resumed reading.
Julie tended to Zoe and came back twenty minutes later. She flopped into bed next to me and said, “Stupid baginas.”
We spent the next several minutes talking about all the adorable ways Zoe mispronounced things and how we would eventually be sad when she stopped. She drank Crystal Like (not Light) and smoovies (smoothies). She liked to eat at Cold Stump (Stone). There were things that were her absolute fravorite (not favorite). And of course, as a girl, she had a bagina.
Although the conversation was funny, Julie mentioned to me that she flushed the toilet after Zoe went and it looked a bit cloudy. It was probably nothing, but she was going to take Zoe to the doctor the next day. A few minutes later, I was sound asleep.
URGENT AND IMPORTANT
When Julie was on maternity leave, she had a bad habit of calling me when I was at work. I would answer the phone and get an earful about something that did not seem that important. At some point, I leveraged the two by two matrix from “The Seven Habits of Highly Effective People” and drew it on Julie’s whiteboard. On the y-axis, was labeled “importance” with a line for not important and a line for important. On the x-axis, I had a label for “urgency” with lines for not urgent and urgent. I then proceeded to circle the quadrant in important and urgent and said, “Don’t call unless the issue lies here.”
Yes, ladies, I know it’s sad that I’m taken as I know I look like an absolute joy to be with. However, this drawing saved me from ducking out of several meetings to hear details of things that could wait until I was at home. With this in mind, the next day, Julie called me while I was in a meeting towards the end of the day. I almost answered the phone because I figured it must be important if she called, but I let it ring. I figured if it was important, she would leave a voicemail or call back.
Julie did neither and I knew something was really, really wrong. I tried calling her back multiple times and couldn’t focus on anything until I reached her.
DENIAL, ANGER, BARGAINING, DEPRESSION, AND ACCEPTANCE
While this is intended to be my personal account of caring for a young child with Diabetes, this portion was told to me by Julie. I hope that I captured this portion of the story accurately.
Julie brought Zoe to the doctor and the doctor was able to diagnose Zoe right away. As Julie was expecting a yeast infection and got Type I Diabetes, she was in a bit of shock. The doctor made arrangements for Zoe to be admitted into the Seattle Children’s Hospital where she would begin insulin therapy, get her glucose levels back under control, and Julie and I would receive the training that we would need to care for her until she was old enough to care for herself.
I am still unclear as to how much was told to Julie and Zoe in the doctor’s office. I do know that, later, Julie recounted to me that she was driving over the 520 bridge towards Children’s Hospital when Zoe began to cry.
“You mean I’m going to have to get shots before I eat anything for the rest of my life?”
Julie told me that she dug very deep inside to not lose it and stay strong in front of Zoe. Julie confirmed Zoe’s worst fears and tried her best to calm her down. The two were admitted and placed in a hospital room when Julie called me back.
Personally, I felt like I was going to vomit when I heard the news. I spent the rest of the day Googling random combinations of phrases combined with diabetes as I had no idea what this disorder was. To make things worse, the only person around me when I got the news asked me what was wrong. I said my five year old daughter was diagnosed with diabetes. He responded with, “She’s going to have a rough life.” I called him Crazy Jim for a reason…
I picked up Carson from extended care and told him that his sister was sick and that she was in the hospital. I tried to keep it high level and assured him that even though she was sick, she could not make other people sick. I did my best to let him know that since we knew what was wrong with her, we could keep her healthy and that she was going to be alright. Us boys went back to the house that seemed way too empty and way too quiet without the girls and ate our dinners in silence.
After dinner, I cleaned up a bit and announced that I would write Carson’s teacher and let her know that Carson would be missing a few days of homework. Carson’s heart is never into doing homework, but my will to sit him down and make him do it was simply lacking. We watched TV for a bit and put him down for bed. I was thoroughly depressed.
Before turning in for the night myself, I called Julie and the initial depression started to lift.
“She has been absolutely amazing. She is laughing and joking with the staff. They have checked her blood sugar and given her insulin injections, but she’s doing really well. Make sure to come visit tomorrow during the day and bring Carson tomorrow evening.”
The next morning, I dropped Carson off at school and went to Fred Meyer. I looked a lot like Gru from “Despicable Me” as I purchased a giant pink, fluffy unicorn to bring with me to the hospital. I did my best to stay focused on work and left for Children’s Hospital.
I made my way to Zoe’s room and I did not find a sick little girl. I found a vibrant and cheerful child who was laughing and smiling like normal. She positively lit up when she saw me and hugged and kissed her new unicorn. I asked her how she was feeling and she said, “Great!”
Nurses came and went and I witnessed her glucose being tested. She barely noticed as her fingers were continuously pricked for blood and looked at the glucometer with genuine curiosity as to what “her number” was. She seemed to enjoy the balloons and gifts that had been sent and seemed perfectly happy to have Julie’s undivided attention. When Julie was not by her side and attending classes/training on Diabetes, Zoe seemed extremely comfortable with the staff at Children’s Hospital. The sickness in my stomach I had been carrying around began to fade.
WHAT IS IT?
Diabetes is in the news a lot and comes in a few different forms; Type I, Type II, and gestational diabetes. The artist formerly known as Juvenile Diabetes, now Type I, is an autoimmune disorder. As its previous name indicates, it is usually diagnosed in childhood. Roughly 1 in 400 people carry the genetic marker that makes them susceptible to Type I Diabetes, but not everyone with the marker will become a diabetic.
At some point, those carrying the marker may have an incident that triggers their immune system to attack their own pancreas killing the beta cells that are responsible for producing insulin. Each case is different, but after this attack there is a “honeymoon period” where some amount of insulin is still produced. The honeymoon period varies for each individual, but insulin production does not shut off overnight.
Insulin is used by the body to break down glucose. Without it, glucose levels will rise. High glucose, or hyperglycemia; results in feelings of lethargy, high glucose readings, fruity smelling breath, feelings of thirst, frequent urination, and cloudiness in urine (from excreted sugar). If it goes untreated, it can lead to ketoacidosis which can cause a person to slip into a coma or even die.
In a non-diabetic, the pancreas produces insulin as a response to consuming carbohydrates. The blood glucose level is regulated and will be in a certain range. I can eat a half gallon of ice cream and snort a line of sugar and my glucose will not go over 100. Zoe, on the other hand, is usually over 150, a number determined by a team of medical experts.
While hyperglycemia is bad and can lead to a coma and death, the opposite end of the spectrum is hypoglycemia. Hypoglycemia is caused by blood sugar being too low. Coincidentally, at its extreme, hypoglycemia can also lead to a coma and death. The whole trick to being a Type I Diabetic, therefore, is to keep one’s blood glucose level within a certain range.
The instruments that a Type I Diabetic, or in this case the diabetic’s parents, have are two forms of insulin and a glucometer. This is far from an exact science. A small amount of blood is drawn from the finger or toe of a diabetic and placed on a testing strip. The glucometer analyzes the blood in about five seconds and returns a number. The number of carbs that will be ingested is estimated and a correction may or may not be administered based on the results from the glucometer. The diabetic is then administered a certain amount of insulin before eating. This MUST happen before every meal. In our case, Zoe’s glucose is checked roughly 5-8 times per day. She receives one injection of Lantus (a slower acting form of insulin) every morning and an injection of Humalog (a quick acting form of insulin) with EVERY meal that contains more than four grams of carbohydrates.
Type II Diabetes, which was formerly known as Adult Onset Diabetes, usually begins much later in life. Whereas sadly, there is no cure for Type I diabetes, Type II diabetes, depending on the case, can be managed to the point where medication is no longer required. Often times, Type II Diabetes is associated with obesity, bad diet, and general lack of physical activity. There is a condition for Type II diabetes referred to as “pre-diabetes” which is reversible. However, I would strongly urge anyone reading this to not judge any diabetics as there is a strong genetic component to Type II diabetes as well.
IT’S NOT YOUR FAULT
“It’s not your fault,” was small solace that was repeated to Julie over and over again in the hospital. Zoe, Carson, and I all got a virus that made us sick. Carson and I were grumpy for a few days, wanted more sleep than we got, and eventually recovered. Zoe’s body, on the other hand, went overboard and killed the beta cells in her pancreas.
In hindsight, all the symptoms were there. She dropped some weight, always claimed to be thirsty, and sometimes acted extremely tired. Even though, as parents, we dropped the ball a bit, we caught the problem before serious complications ensued. Sadly, many children are diagnosed when they have a hypoglycemic incident and wind up hospitalized.
I attended one class in the hospital and I think I grasped everything that I needed to know in about ten minutes. We were with another family that had their ten year old son diagnosed. The boy was in our training with us and it was interesting to hear his perspective. He wasn’t exactly excited about his condition, but at the same time he was adamant that he felt so much better after being diagnosed and having his glucose levels restored to normal. As bright and verbal as Zoe was at the time of her diagnosis, she was only five. Hearing firsthand from someone more capable of articulating himself was a good experience for me.
The boy’s father allowed his son to inject him with saline solution to get some experience with a syringe. I vowed that I would let Zoe practice on me as well. Thankfully, when I offered, she said, “No thanks. Can’t I just practice on an orange or something?”
I practiced on some synthetic skin. I was absolutely terrified of handling the syringe and the thought of sticking it in my daughter. Now, a year later, I can do it one handed.
CARSON’S REACTION
In the evening, I took Carson to see Zoe. We found her room, but Zoe was absent. We wandered to the play area and I was unprepared for what happened next. Zoe was being Zoe. She had a bubble wand and was happily creating bubbles and chasing them. Carson saw her and began to cry. Carson never cries.
“She’s going to have to get shots for the rest of her life!” he bawled.
I didn’t know what else to say as I saw my girl acting every bit the same as she would have had she not been in a hospital.
“Carson, she’s still the same old Zoe,” I said.
“Yeah! Carson, I’m still the same old Zoe,” she said giggling.
Just like that, Carson stopped crying. Just like that, Zoe was no longer a victim. We could have been anywhere and the kids snapped right into their usual roles. Zoe blew bubbles and Carson chased them. They laughed. They played. They fought. They made up. They played some more. Zoe and I made a painting and Carson talked to Julie. I took Carson home and we both felt much better than we did the night before. On Thursday, we barely spoke to each other, on Friday we were laughing and wrestling again. I made sure that Carson knew Zoe would be coming home for good the next day.
“Same old Zoe,” became our family motto for a while. However, on the fourth usage of this phrase, Zoe paused and looked at me quizzically saying, “Wait, I’m not old!” Just like that, “same old Zoe” became “same Zoe.”
THE AFTERMATH
At noon, we went to the hospital and Zoe was again bouncing off the walls. Laughing and smiling. We packed up care packages and gifts. She said her goodbyes to the staff. Just like that, we left. At home, things started to feel pretty normal. I spent a little extra time calculating how many carbs she was about to eat, I did her injection for dinner, and then we ate.
At home, everything was fine, but in a day, Zoe would be returning to school. Julie had reached out to the nurse and we were told that Julie would have to handle her injections until the school was prepared. Fortunately, Julie was working from home when not travelling to Texas and would be able to drive the five minutes each way to handle her lunchtime needs. We didn’t know why the nurse was not doing it and didn’t question it for the first week. However, one week was quickly turning into multiple weeks and we started to press for answers.
It turns out that the nurse was going through the “procurement process” for a sharps container and that is the reason Julie was doing the injections. I will be the first to say that there is a strong protocol for the handling of medical waste and needles that truly does need to be followed. I am extremely careful about discarding needles and only do so in designated containers. I would feel horrible if a fast food worker or hotel maid got pricked by a needle. I’m sure anyone randomly stabbed by a needle conjures up images of a methed out trucker with Hepatitis C versus our cute little curly haired girl with no communicable diseases. If anyone was randomly pricked, the testing and waiting would be a sheer nightmare and I wouldn’t wish that on anyone.
Thankfully, a sharps container can be easily purchased at any drugstore at a cost of roughly $3. This is not an exaggeration, I just bought one for $2.96 That’s right, the school nurse refused to do Zoe’s injections because she didn’t want to either ask us to or go herself to any number of drug stores in the area (Target, Rite Aid, Fred Meyer, and/or QFC are all in close proximity to the school) and spend $3. Then, even after the container was in place, she refused to do the injections.
Turns out, in the State of Washington, pretty much anyone can be a nurse. The nurse at Emily Dickinson didn’t really seem to want to do any more than check children for lice and apply the occasional band aid. In fact, the nurse then went on to propose that Zoe inject herself under her supervision. Eventually, in order to accommodate our child’s needs as mandated by state law, a temporary nurse was brought in at the expense of our community. Even worse, the temporary nurses were rotated through with zero consistency.
JUST ONE RULE
Diabetics are taught there are multiple sites where they should inject their insulin. The back of the arms, legs, and stomach are all valid sites. We were cautioned that injection sites can develop a build up and therefore it is very important to rotate sites. In the hospital, under medical supervision, Zoe was injected in the back of her arms, the front and back of her legs, and in the stomach. She absolutely hated getting an injection in the stomach, so we promised we would never do that site again. To this day, she prefers to take her injections in the arm, but does not put up much of a protest about using her legs. This girl receives multiple injections every single day without protest and I thought the least I could do is honor her one and only rule.
So the nurses came and went and a little five year old girl had to adjust to the different nuances of the various inconsistent adults responsible for her injections. Until one day a nurse that had experience with diabetes caring for elderly patients insisted she take her injection in her stomach. Zoe refused and stated plainly, “It’s my body and I don’t like getting injections there.”
She reached a standstill with the nurse du jour and wound up getting her teacher involved. I couldn’t be more proud of her for standing up for herself. Sadly, as our family prepared to move out of state, the school is no better equipped to handle a diabetic student. Statistically, at any given time there should be over one student who needs a nurse capable of monitoring and working with a child. Instead of viewing our circumstance as a wake up call to ensure that they could accommodate future children with similar needs, our departure was celebrated as the school would no longer need to bring in additional nurses. The original nurse who steadfastly refused to learn a new skill is still there doing nothing more than she did before.
NEW SCHOOL, NEW RULES
When Julie and I had our offer for our new house accepted, we immediately looked into how would Zoe’s needs be accommodated. Whereas I do not have enough bad things to say about Emily Dickinson, I have nothing but positive things to say about Bee Cave Elementary. At her new school, Zoe has the same nurse. The nurse has been patient and kind to Zoe and has never failed to call Julie if needed. Moreover, if a child brings in cupcakes, the nurse does not get flustered and knows how to take care of the situation. I have met her on several occasions and am very happy that we have much better care for our daughter.
Though the nurse situation is better, the extended care has not always been as good as I would have liked. The Boys and Girls Club in Redmond was staffed by many councilors that Zoe looked up to. Her absence was obvious and notable and when she returned, the councilors treated her no differently than before. Both kids loved being there and that was due, in large part, to the staff.
The extended care situation in Texas has been a bit different. At first, the kids were a bit overwhelmed by it, but eventually, they settled in. However, there was a woman in the front who used to have a very large tray of candy that she would give out to the kids. Zoe has always been very good about either refusing the candy outright or saying, “I’ll put this in my backpack and save it for later.” Both are perfectly fine answers. The woman had been told multiple times that Zoe was a diabetic, but it was almost like she would wildly overcompensate for “forgetting” and offering up candy. The first three times, I let it slide. I simply said as soon as Zoe was out of earshot, “Please don’t make a big deal of it. She knows how to handle the situation. I’d appreciate it if you don’t keep bringing it up, especially when she’s standing right here.”
Then little things would slip out of Zoe’s usually very positive mouth. Typical argument:
“Dad, can you take me to Justice to buy a toy?”
“Is today your birthday or a special occasion?”
That’s usually where the conversation ends, but Zoe countered with, “But I have diabetes and it’s really hard!”
I pulled the car over and took a deep breath.
“Zoe, it really isn’t fair that you have diabetes. I admit this. And I am sure it seems hard sometimes, but the thing is - everyone has something that makes their life difficult. At least you know what that thing is. We can manage this problem and you will lead a long and happy life if you don’t see yourself as a victim.”
Inside, I was seething. I knew exactly where this bullshit was coming from. Julie had a word with the individual and it got better, but I believe that someone in the care of children should not be telling her how hard her life is or letting her feel like a victim.
On a similar subject, I had a brief conversation with my parents which felt pretty awkward at first. They came to Texas for the holidays and it was only a few months after Zoe’s diagnosis. I (for me) gently asked my dad not to comment at all when Zoe gets tested or receives an injection. I told him he would be tempted to say something about how good she is about it, but I prefer that he acted like it was the most natural thing in the world. For once in my life, I must have been fairly tactful because my dad said that he understood, that it wasn’t a problem, and he would be sure to respect my wishes.
In the early days, Zoe would want to go to the bathroom to receive an injection. I put a stop to it fairly quickly. First and foremost, there is no place I would rather NOT take my daughter than a filthy men’s room. Second, this might very well be a lifelong condition. There is no reason to hide it or, more importantly, to feel ashamed of it. My policy has led to some pretty funny scenarios.
DIABETES, MEET ASPERGER'S
Julie, Zoe, Carson, and I were in the dining room of a McDonald’s where I proceeded to check her glucose. I did the math quickly and pulled out her humalog pen and proceeded to give her an injection in the arm. As I was covering the needle and placing it back in its case, an eight year old said rather loudly and inappropriately, “She must have diabetes. That’s very serious.”
The boy’s mother was absolutely mortified. And just like that, the boy and Zoe both took off to the playground. Julie took one look at the mom and smiled.
“He’s on the spectrum isn’t he?”
The mom was somewhat relieved and a very long and bonding conversation ensued about raising children on the spectrum and the funny, brutally honest things that they say.
Zoe has definitely come a long way from when she used to feel uncomfortable about getting injections in public. Sometimes I forget that her schoolmates and friends have never seen her get tested or receive insulin. These things are always done in the nurses office. Lately, when a friend is over at the house and witnesses it for the first time there’s a pattern.
“What’s your dad doing?”
“Testing my glucose.”
“Does it hurt?”
Shrug. “Not really.”
Me, “Zoe is super tough and doesn’t even feel it.”
And like that, the subject is no longer taboo. The next testing or injection seems like the most normal thing in the world and the kids stop focusing on it. For the most part, when she is not being poked by needles, she is a perfectly normal kid. She loves “Frozen”. She plays outside. She likes to make up games with her friends. As a parent, there is such a fine line between letting her know how important this disease is to manage and not letting it define her.
HALLOWEEN
Zoe’s diagnosis came the week before Halloween. We were a bit at a loss about what to do as we wanted to make sure that she felt as normal as possible. Fortunately, Julie did some research and we came to an agreement.
Zoe would wear a costume and trick or treat and collect as much candy as possible. After trick or treating, she could pick a few pieces of candy and have them. The rest, she would sell to us so that she could a toy or save it for something that she wanted. We were lucky that Zoe was more excited about money than she was for candy and her first Halloween was a smashing success.
A few weeks later, in the car, Zoe said out of nowhere, “You know, I like toys more than candy.”
“That’s cool, but why is that?”
“Because you don’t even need a shot to play with a toy.”
“Because you don’t even need a shot to play with a toy.”
It’s not what she says, it’s how she says it. She really meant it as a statement of fact and wasn’t feeling sorry for herself. I couldn’t have been more pleased with how she has adjusted.
WE CAN’T GO TO MCDONALD’S
About two weeks after her diagnosis, I was driving the kids home. Carson said, “Can we go to McDonald’s? We haven’t been there in forever.”
Zoe responded, “No, Carson. We can’t go out to eat any more because of my diabetes.”
I came close to cutting over four lanes of traffic to make a u-turn and head in the opposite direction.
“Zoe! We can go to McDonald’s. We can do anything that we used to do, we just have to plan for things. We are going to go to McDonald’s tonight.”
No matter how much you hear about sugar and obesity, that did not cause Zoe to become diabetic. These lifestyle factors are relevant to Type II diabetes, not Type I. Her disease was caused by an autoimmune disorder. I don’t think that my children should eat McDonald’s daily, but it is fine to go there occasionally - mainly when I don’t want to cook, clean up, or spend a lot of money.
We walked into the Redmond McDonald’s and that’s when I began to panic. Yes, almost every fast food joint provides nutrition information. That’s good! That information is very hard to find, use, and understand. That’s bad…
Honestly, I got my first professional break in life when a partner at Deloitte Consulting asked me during an interview, “What’s twenty-two times seventeen?”
I didn’t even hesitate. “Twenty-two times seventeen is the same as twenty times seventeen plus two times seventeen. Twenty times seventeen is the same as two times seventeen times ten. Two times seventeen is thirty-four. Thirty-four times ten is three hundred forty. Plus two times seventeen is three hundred forty plus thirty-four. The answer is three hundred seventy-four.”
The partner was dumbfounded. He told me in all his years, he had never seen anyone do that before. I can’t figure out how this “math monkey” (as Julie calls it) skill of mine makes me qualified for any job. I’m a bit of an idiot savant when it comes to this sort of thing. Regardless, I am trying to establish that I’m pretty decent at this type of basic math, but standing there that night in the McDonald’s, it was pretty daunting.
Doing the math is the easy part. Finding the information, remembering the information for multiple items, and doing all of it while the kids are tugging on you is the real trick. However, Zoe was so happy to be doing something so normal that I’m glad I made the u-turn.
I can’t tell you how much time I have spent trying to find nutrition information on my phone or diligently looking it up on micro-sized font from a poster while being bumped by patrons. At this point, I know by heart the carb counts of most of the usual suspects. That and I started to figure out that being exact is impossible. Most of the time, it’s the best guess combined with monitoring.
Several months later, we went on a cruise to Alaska. Almost every meal was served buffet style and there was no nutrition information to be found anywhere. Usually, my OCD prevents me from guessing, but guess I did. The first few days, she ran a bit high. By the end of the cruise, we had her pretty stable. Learning how to guess was a lesson I was not able to learn until Zoe helped me out.
JAY FUCKING CUTLER
When I was in the throes of my fantasy football addiction, I wound up drafting Jay Cutler as my starting quarterback. On a particularly bad week for Mr. Cutler, he gave me an almost unheard of negative amount of points on a three interception four fumble game. In fact, I lost my weekly head to head match up by less than two points. Had I not started Mr. Cutler and had simply not played a quarterback, I would have won.
I did the only thing I could think of doing, I took to FaceBook and stated that Jay Cutler sucked. I did not expect the response that I got. A friend from high school, who doesn’t care about football in the least, defended him. She has been a dietician and working professionally with diabetics for years. She went on to inform me that not only does Mr. Cutler donate a large amount of money to diabetes research, he donates a lot of time to working with children with diabetes. To these kids, he is nothing short of an inspiration. Here is someone playing one of the most demanding positions in the NFL who has to do the same things they do - checking glucose levels, getting injections, logging his numbers, etc. Seeing a living breathing example of an athlete not held back by their disease is incredible for their morale.
Ordinarily, I would not speak about someone else’s medical condition. However, in this case, Mr. Cutler has been extremely forthcoming about it. In fact, reading some of his interviews on nfl.com has helped me understand Zoe a bit more. Again, Zoe is a bit too young to be articulate. Mr. Cutler on the other hand did not become a diabetic until he was twenty-four years old. His diagnosis came in part due to his extreme exhaustion he experienced while working out with teammates in preparation for a new season. He talked quite a bit about how when he is glucose gets very high (near 400) he can barely get out of bed.
Zoe has always been pretty bad about getting out of bed, but at least I understand that now there is a medical issue making it worse. When I test her and see that she is high, I try to be extra patient and give her some time for her to level out. She is a little kid and these things are difficult to understand.
Regardless of whether Mr. Cutler leads the Bears to a Super Bowl, I will forever be grateful for his willingness to share his condition and raise awareness. He is doing an incredible job of leading by example and thus far he has outlasted the two quarterbacks drafted ahead of him in 2006 (Vince Young and Matt Leinart). He takes the condition seriously, but does not let it hold him back. Zoe was mesmerized in an interview where he spoke about his condition and seemed connected to him when he showed the pen he uses to inject insulin. I was happy for her to have a positive role model.
DID YOU GIVE ME MY SHOT YET?
Recently, Zoe has shown some interest in injecting herself, which is cool. However, most of the time, either Julie, myself, or the nurse does the actual injection. On some level, she has to know that I am not entirely comfortable poking her with a needle. There have been several occasions when I have given her an injection when she smiles at me and says indignantly, “When are you going to give me my shot? I want to eat.”
I know she is doing it to make me feel better about what I have done. It’s her way of letting me know that she isn’t hurt by it. I will always be thankful for it.
Right before Father’s Day, I looked at Carson and said, “Carson, you made me a dad.”
Zoe, being the youngest, didn’t want to be outdone.
“Yeah, but I made you a nurse,” she piped in.
99.99% of the time her attitude and sense of humor are absolutely perfect. It makes it so much easier for those who help take care of her.
YOU KNOW EVERYTHING
For all of my lack of empathy, I try to do my best when it comes to my daughter. However, I do not have her condition nor do I know what it is like to go through a daily routine of glucose monitoring and injections. One of Julie’s co-workers has a sixteen year old daughter, coincidentally named Zoe, who is a Type I diabetic. Teenage Zoe, as she is called in our house, occasionally babysits and is a great role model for our Zoe.
Diagnosed at the age of nine; she plays tennis, is a good student, and has a very positive outlook. Teenage Zoe has made it a goal to become an endocrinologist and has participated in numerous diabetes studies.
Julie mentioned once that Teenage Zoe was attending a diabetes conference. Our Zoe responded with, “Why would she go to a conference about diabetes? Your blood sugar gets too high and you pass out. Your blood sugar gets too low and you pass out. There, you know everything.”
Again, it’s not what she says, it’s how she says it. Our Zoe who adores Teenage Zoe couldn’t possibly fathom spending an entire day learning about diabetes research. Our Zoe has mastered the Zen art of living in the present and controlling what she can control. I definitely can learn something from her.
RUSSELL WILSON’S DAD
A few months in, I was in bed after the kids were asleep. I don’t know why, but I wound up looking at Russell Wilson’s (star quarterback for the Seattle Seahawks) Wikipedia page. I had known that Wilson’s father, Harrison Wilson III, had died before Russell made it in the NFL. According to the good folks at Wikipedia, Harrison passed away in 2010 due to diabetes related complications.
With all due respect to the Wilson family, this scared me. Not knowing the exact circumstances there are things about Harrison Wilson that are widely known. Harrison graduated from Dartmouth University, received a law degree, and practiced as an attorney. I think it is safe to say that he was an intelligent man. Further, Harrison played football for Dartmouth and made the San Diego Chargers practice squad. It is safe to say he was a good athlete. Yet he tragically passed away at the fairly young age of fifty-five. It would have been much easier for me to read had this not been about someone who was well educated and probably took good care of himself.
I talked to someone who deals with diabetics on a daily basis. The sad fact is that a large amount of diabetics fail to control their disorder. It is estimated that a full one third of those with diabetes do not monitor their disease at all. Yet, in spite of this alarming statistic, the life expectancy of a diabetic has gone from twenty-seven years less than the regular population to just three years less. Advances in insulin therapy and monitoring have made this disorder far less devastating than it was in the past.
My friend was quick to point out that while Harrison Wilson may very well have done everything right, he is the exception and not the rule. Due to the amount of discipline and vigilance required of diabetics, especially the Type I’s who are detected early in life, many are far healthier than the general population.
However, as I sat there in bed reading a seemingly innocuous Wikipedia entry, Julie came in and asked what I was reading. At that moment, I would have rather had her catch me looking at porn than reveal what I had just seen.
I would like to thank Russell Wilson for donating money to the Charles Ray III Diabetes Association and spending his off days visiting children at the Seattle Children’s Hospital. As new and horrifying stories seem to be coming out of the NFL on a weekly basis, I am glad that many are using their wealth and celebrity for good causes.
A CURE
Wanting to accentuate the positive, I recognize that treatment of diabetes has radically improved. The life expectancy gap has considerably shrunk, the quality of life has greatly improved, and a cure always seem to be just on the horizon.
I first started reading about a few viable options that sound almost like science fiction. Researchers are working on combining a Continuous Glucose Monitoring System (CGMS) with an insulin pump to create a “Bionic Pancreas”. While a diabetic’s pancreas may have failed them, technology is almost ready to have a small machine capable of secreting glucose or insulin as needed by the user without their intervention (http://articles.baltimoresun.com/2014-09-12/health/bs-hs-bionic-pancreas-20140912_1_type-1-diabetes-insulin-pump-american-diabetes-association).
At the same time, therapies attempting a biological cure are also being explored (http://jdrf.org/research/cure/#regeneration). While both approaches are fascinating and worthy of continued research, I have stopped talking about a cure in front of Zoe.
I tend to forget at times the way that children can perceive the passage of time. I can remember being Zoe’s age and having my mom say, “We will leave in five minutes.”
At the time, five minutes seemed like an absolute eternity. Today, five minutes seems like nothing. Telling Zoe that the bionic pancreas may be available in a few years is tantamount to saying it could be available in a couple of decades. The best we can do is to live in the now and use the tools that we have, support research efforts, and continue to hope. Setting expectations or continually wishing for a cure does not seem like the appropriate strategy.
WE DON’T NEGOTIATE WITH TERRORISTS
It can start innocently. “Carson and Zoe, do you want spaghetti and meat sauce or tacos for dinner?”
The kids do not answer. “C’mon guys, which one is it?”
Finally, Carson says, “Spaghetti.”
Now, Zoe is perturbed because her brother got his choice, so she has to go the opposite. “But I want tacos!”
“Carson answered first we are having spaghetti.”
“Fine. I’m not eating and then I’m going to pass out because you don’t love me.”
Love him or hate him, former President Ronald Reagan had a saying which I find appropriate for these, thankfully few, times. “We do not negotiate with terrorists.”
It’s a fine line that we walk between taking her disease seriously and allowing her to feel like a victim. Thankfully, the last incident was several months ago and I sent her to time out for saying that. Before we even got home and the time out started, she said that she was sorry and didn’t really mean it.
The word “zoe” means life in Greek. In retrospect, we couldn’t have picked a better name for our girl. I would like to take some credit for her resilience, usually fantastic attitude, and her sense of humor. None of these attributes are a result of good parenting. They are simply who she is and we are very fortunate.
Throughout this first year, she has been forced to grow and mature way beyond her years. There are times when these types of arguments arise and they are so atypical that I have to step back and remind myself that she is only six. Like I said, we are very lucky.
THOSE PARENTS
Chris Rock has famously stated that his goal in life as a father to a daughter is “to keep her off the pole.” Preventing my daughter from becoming a stripper is definitely high on my list of priorities. However, right after that goal is to avoid giving her an eating disorder.
That being said, I think to the uninitiated, it may sound like we are well on our way to doing just that. We often discuss the number of carbs in food with a six year old. It may sound like we are trying to force a low carb diet or making her more body conscious than appropriate, but this is absolutely necessary.
Good, well meaning people have tried to help out. I was at a party when Zoe stated she was hungry. I told her she could have some cheese (zero carbs). The host kindly offered that she could have blueberries. After all, blueberries are “healthy”. Ordinarily, yes blueberries are a great food and kids love them. Unfortunately, it would necessitate another injection and it is difficult to figure out the right amount of Humalog to inject given she had just ate.
At some point, Zoe will be capable of making her own decisions and will be much better at meal planning than we are. It is, after all, her body and she knows best what foods make her feel good. Until then, we could use a little understanding as we have these conversations which might seem inappropriate for a child of this age. We are doing our best to care for her and are not trying to force her on any kind of diet or make her feel bad about herself.
DEPRESSION
One of the first things I learned about diabetes is that diabetics have two times the likelihood of developing clinical depression. At first, I thought the depression was from maintaining the level of discipline required to treat the disorder, the constant injections, and the level of anxiety over glucose levels. All those factors may very well contribute to depression, but a diabetic’s glucose levels have a huge impact over mood.
Paradoxically, have a glucose reading over 400 makes a diabetic extremely lethargic to the point where it is difficult to do simple things like get out of bed. This level of lethargy looks a lot like clinical depression. Knowing what a huge impact glucose levels has on moods, it is imperative to make sure we keep her in an appropriate zone for both her long term physical state, but also her mood/mental state.
CALL TO ACTION
Our taxes were radically complicated by living in a foreign country, selling a house, and a few other things. That being said, we filed for an extension. Realizing that our extension date was coming up, I got on the phone with our accountant to finally deal with everything. One of the questions I got asked was, “Did you make any charitable contributions in 2013?”
I paused. Then I got embarrassed. The answer was no. The “Ice Bucket Challenge” was a fantastic campaign that brought awareness and contributions to an important disorder. No one I know is affected by ALS, but the research conducted there is applicable to other disorders. Hopefully, no one is charity-ed out at this point and if you have read this far, you would consider donating to a few worthy charities:
If you feel amused, educated, or entertained in any way; please consider a $5 donation to either of these sites. Or, if you have your own personal cause or charity, donate a few bucks their way.
Additionally, even though Type I diabetes is exceedingly rare - be aware of the signs. Type II diabetes affects roughly 1 in 8 Americans. Know the signs and make appropriate lifestyle changes. I continue to caution against judging Type II diabetics, as genetics makes a strong contribution to this disorder, but Type II diabetes may be able to be prevented and controlled. Make sure to get a decent walk and avoid large quantities of sugary drinks and simple carbohydrates on a repeated basis.
To everyone who has asked about Zoe, thank you for your continued support. Know that she is doing very well and we are very, very proud of her.
