My son Gavin, at eighteen months old, was diagnosed with Type One diabetes. I was in the middle of my shift at the Movie Tavern, working another overtime shift because I was a single mother and rent was due in two days. My mom, who was babysitting my older boys and my newborn twins for the day, was supposed to be taking Gavin to the doctor because he had the flu and it wasn’t getting better. On top of being sick, his pediatrician thought that I had been unable to feed him or that I may have been neglecting him because of the weight he was losing. The few times that I had seen him this week, he was indeed thinner and always tired or sleeping. The team was in the middle of our morning meeting when my phone started vibrating in my pocket. Normally if I silenced it, whoever was calling would try back later in the day. This call was determined. It was my mom calling so I ran into theater six and took the call. She said, “Jena. They are taking Gavin by ambulance to Children’s Hospital. I sent Max to pick you up and bring you. They tested Gavin for the flu and it was negative so they ran some other tests. He tested positive for diabetes like I thought.” I remember asking her what that meant. What was diabetes? “It is really bad. He will have it for the rest of his life. I almost wish it were cancer.” When I entered the hospital room he was sitting in the hospital bed draped in a purple gown with an I.V. in his arm, and he was breathing rapidly. He looked fragile laying there asleep, fighting for his life. This tiny human being, born without a functioning pancreas, was about to change my life. This is the day that I stopped caring about my social life and my unfulfilling job as an overworked, under payed server, and I started to put all my time, energy, and focus on my children.
“Strength doesn’t come from what you can do. It comes from overcoming the things you once thought you couldn’t.”
To love and care for a diabetic child is multifaceted. To care for a diabetic child is to be a nurse and a doctor. It means remembering every single medication or tool that may or may not be needed at any point in time. It means being alert all day long to behaviors and signs of high or low blood sugar. It requires you to wake up from sleep all throughout the night to prevent your child slipping into a coma in their sleep. It means driving to his school twelve times a day, or bringing him home for sick day management so that a simple flu doesn’t turn his blood into acid and throw him in the hospital.It means advocating for him when even the doctors at urgent care know nothing about diabetes or his teachers do not understand the necessity for him using the bathroom a lot.
To love a diabetic is to be insanely patient. It means knowing that some days he won’t feel good for no reason at all. It means cancelling plans when he suddenly doesn’t feel well or teaching him about his disease so that he can be independent one day. It means holding his hand while he gets his blood drawn and through hours of appointments every few months.
To love a diabetic is to be a therapist. It means consoling him when he is tired and feels like he can’t do it anymore. It’s listening to him feeling like an outsider when he can’t stay the night for birthday parties or eat a cupcake in class. It’s trying to hide him when he is checking his blood glucose so he doesn’t feel like a freak and praying for him relentlessly.
To love a diabetic is to be a guardian. It means standing up for him when his mood flips and nobody else understands. It’s telling people off when they stare at his pump or at him checking himself at the dinner table of a restaurant. It means advocating for him to everyone you meet so that maybe someday people will stop insisting that this diabetes is the same diabetes grandma had that she cured with okra.
To love a diabetic is to not be superficial. It means seeing his little finger callouses and his bruises from pumps and loving him for the struggle that created those. It’s decorating pump sites for hours on end just to make him feel better about his two inch pump in his arm. Its sewing pockets into his clothing so that he can hide his gear and look badass.
To love a diabetic is to be understanding. It means knowing that he doesn’t always mean to be an ass when he is high or cry for no reason when he is low. It means donating labs to research studies you don’t understand fully and trying new things that could lead to a cure someday soon.
To love a diabetic is to be smart. It means researching new medications and methods, reading science journals and books about diabetes so that we are on top of it at all times. It means educating everyone around you so that they understand or donate to research for the disease. It’s stock piling supplies and prescriptions in case of an emergency where these everyday life saving supplies are no longer available to him. Its fantasizing about what you could jimmy rig in your house in case of an apocalypse.
To love a diabetic is to be selfless. It means going to a restaurant based off the carbohydrates menu instead of the atmosphere. It means hovering, being annoying and always being available at a moments notice. It means his dexcom glucose monitor that insurance will not pay for comes before a new car. It’s not taking a vacation because anything could happen while you are gone and its too risky. It’s missing date night because you don’t have a sitter that can do diabetes to your standards if at all. It’s inserting pumps or checking your blood sugar so that he feels better about it even thought you are not a diabetic.
To love a diabetic is to be brave. It means keeping your chin up while he talks about being miserable and you do not cry. It’s about praying about the scary things that run through your head at all times like seizures and dead in bed syndrome. It’s keeping a straight face knowing the chance of him statistically making it past 40 isn’t great.
To love a diabetic is not easy.
Insulin On Tap 