I originally wrote this in January of 2018, on the twentieth anniversary of my daughter’s diagnosis with Type 1 diabetes.
Twenty years ago today [now twenty-five years ago], everything changed. Not so much for me as for my first born.
In December of 1998, during my winter break from teaching, my 19-month old daughter Emily and I got the flu. It was clearly a particularly bad flu season because I can count the number of times I’ve gotten the flu on one hand, and this was one of them. The two of us snuggled together on the couch for a week as our bodies fought to make us well. Soon enough, I was up and about, feeling much better. But Emily continued to just lay on the couch. For another week. She wouldn’t eat, but she was willing to take formula from a bottle, so I was relieved that at least she was getting some nutrients.
After a week of this and concerned that she wasn’t improving, I took her to urgent care, which was filled with parents and children suffering from that year’s flu bug.
“She has the flu ma’am. Just take her home and let her sleep,” I was told by an irritated doctor.
So I did.
Another week went by. Emily was still laying on the couch and not eating. So I took her back.
“Weren’t you here before? Remember? She has the flu,” I was reminded with a shake of the head.
They sent me home again.
The way I typically deal with illness is to just keep going, ignoring any symptoms. The longer I tend to lie around, the worse I feel. So I thought I would implement that strategy with her. We went out and celebrated Christmas. And New Year’s. I dragged her out to the playground, to Mommy and Me classes. And she was a nightmare to deal with (sorry Em, but you were!): constantly crying and cranky.
I had made up my mind that if she wasn’t better by the next Monday that I would return to urgent care a third time. But when Saturday rolled around and while visiting the grandparents, I announced that I could not take it any more, and I certainly could not wait until Monday. I was taking her today.
This time, I demanded tests: blood test, urine test, and any other tests they could think of.
“This is not my kid. Something is wrong, and you need to figure out what it is,” I told the on-call doctor.
Emily had decided she was not going to cooperate with any of such tests. A nurse had to hold her down on the examining table, and I had to lay down on top of her while the doctor first drew blood and then inserted a catheter. Emily screamed, and I cried through the entire ordeal.
When he finished, he told us to go home. They would call with the results.
But as I walked in the front door at home, the phone was ringing. It was the doctor.
“You need to get back here immediately. Your daughter has diabetes.”
What? I didn’t even know what that meant.
We drove right back to the hospital, where a crew of medical personnel descended upon us and then checked us into a room. My head was spinning.
She had to be checked in to the hospital?? I was so confused. This must be really serious, I thought.
Turns out, it was serious.
That day was twenty years ago today: January 3, 1998 [again, now twenty-five years ago]. Emily was only 20 months old.
My favorite memory from Emily’s birth was the moment she was handed to me. Well, the nurse did not exactly hand her to me. Turned out she was breech, and the doctors performed a C-section, not exactly the birth experience I was hoping for. As a result, my arms were stretched out perpendicular to my body and strapped down. Plus, I had a curtain hanging right below my neck so that I could not see what was actually happening to my body. When it was all over, the nurse brought my new baby around the curtain to show her to me.
I will never forget those big blue eyes looking right as me as she was held about a foot from my face. I remember saying, ‘She’s so cute!”
While they cleaned her up and swaddled her, I actually saw her entire life flash before my eyes. I’m not sure why that was my reaction, but I imagined it all, excited for the future.
But on the day she was diagnosed a year and a half later, I saw that vision fade from my sight.
“I have no idea what this life holds for her,” I thought. And it scared me.
I made the mistake of uttering these thoughts out loud to a few people who then appeared horrified upon hearing this. They would then try to convince me that she would still have a good life, that nothing had changed. They did not understand.
I never said I thought she would not have a good life. I simply said that this is uncharted territory for me, and whatever path her life would have been on pre-diabetes, was no longer the path she was on. I could not deny that this diagnosis would impact how she viewed herself and the world. I wasn’t sad about this, for it could be that her life would be considerably better because of this path. But I was super aware that this disease would in some ways shape her, and I didn’t know what that meant. And I certainly couldn’t relate to how her life would be impacted.
My other reaction was to go to the only thing I knew about diabetes: Steel Magnolias. So as an IV was inserted into her little baby arm, I was in tears because I thought that this baby in front of me could never have a baby! Talk about putting the cart before the horse. And of course, turns out that she indeed can have a baby with careful planning and hyper-vigilant self-care.
Dealing with this disease was, not surprisingly, completely foreign to me, as it usually is for most parents who have a child diagnosed with Type 1 diabetes. So many people have so many opinions about how to handle this disease. It is tiresome. And I feel badly that she will have to listen to uninformed opinions on her health for her entire life.
Did I do everything right as she was growing up? Not by a long shot. Did I make the right choices? Doubtful. But I made the choices that I thought were best for her and that I thought I could live with. What I too unsympathetic? At times, I am certain that i was. Did I beat myself up more than I probably should have? Absolutely. Was I as strict as I should have been? Nope. Did I yell at her at times when a hug would have been a better response? Certainly. It’s always more complicated than our good intentions, isn’t it?
But I remember one time at Family Diabetes Camp, when Emily was eight, and she and her brother James ran off with the other campers to swim or to practice their archery or to do any of the other things kids do at camp. Meanwhile, the parents met with a well-known pediatric endocrinologist. As people described going into restaurants carrying miniature scales and measuring cups to obtain more accurate carb counts of meals, or they described the complicated calculations they used to determine insulin dosages, or they shared stories of requesting friends to not serve birthday cake at their own children’s parties so as to not have their diabetic child feel left out, I felt like maybe I wasn’t diligent enough, for I did none of those things.
After a few such stories, the doctor interrupted and said that he was very pleased that the parents in the room were so meticulous about their children’s physical health, something necessary when dealing with Type 1 diabetes. However, he added, we cannot forget a child’s mental health, even if that means loosening up on the measuring cups and the birthday cake. I instantly felt relieved because I knew that Emily’s mental health was high on my list of priorities, higher than pulling out a measuring cup to fill with rice while eating with family at P.F Chang’s. And this doctor taught me that to make that choice was acceptable and even advantageous.
I can hardly remember those early days of giving shots to a baby in diapers. And Emily has been self-sufficient for many years. For I knew that at the end of this all, Emily needed to care enough about herself and believe herself worthy enough to take care of herself. And she could not be dependent on me for that care. When she was little, she could fight me all she wanted, and there were many days that I had to chase her around the house to draw blood. But I always won those battles. I needed to make sure as she grew older that she would have to be the one to conquer those impulses to run away from it all. And she has.
Today, I am just reflecting on this important anniversary. I have been pretty tough on her. I have probably seemed indifferent at times. I have not showered her with accolades for taking care of herself. I do not regularly ask what her numbers are. I don’t ask a lot of questions as she has been navigating through college [and young adulthood]. I assume she has it under control, and if she doesn’t and becomes concerned that she will let me know. I just remember when I was the one managing her diabetes that I couldn’t stand when people would constantly ask me how her numbers were and then had all sorts of opinions about them. I don’t want to be that person for her. But perhaps that has come across as uncaring by her. I hope not. But I don’t know.
It hasn’t been easy for me, so I know it hasn’t been easy for her. But she seriously is my hero. She never complains. She never blames diabetes for anything. She doesn’t let it stop her. She has her own best interest at heart. And overall, she’s a happy, well-adjusted kid, living a full life.
What more can I ask for today?
These aren’t things I tell her regularly. But I am saying them today. Hopefully none of this comes as a surprise to her.