I am the Alpha Parent.
I’m pretty sure that for families with a kid who has special health care needs, there has to be one parent who has more control over the medical life of the child. I have to say that my husband does a lot: when Wendy is an inpatient at the hospital, he is the one who does the overnight shifts. When we are home, he gets up at two in the morning every night and checks Wendy’s blood sugar. He is there in the morning to give Wendy her first round of medicine. He helps with site changes for both her insulin pump and continuous glucose monitor. And he is the one who largely deals with the health insurance that is connected to his employment.
In short, I am by no means alone in this partnership.
I am an adjunct professor at small college ( I teach three classes per semester). It’s part-time, so much of the day-to-day responsibilities fall to me. These include, making Wendy’s lunch with a break down of the carbohydrates, having near encyclopedic knowledge of all of the carbs in her life, checking her blood sugar and making adjustments to her insulin ratios as needed, keeping in contact with the school nurse, making and keeping appointments with Wendy’s doctors, along with other tests and bloodwork, keeping track of her prescriptions, and being the “parent on call” in case of emergencies. These emergencies might include high blood sugars, fevers, or symptoms that might land Wendy in the hospital. Because she is immune suppressed, she gets sick easier and faster than other kids and it is a constant, everpresent fear.
This is, of course, in addition to the normal parenting duties: carpools, after school activities, sports, sleepovers, cooking dinner, and keeping the house clean enough so I’m not mortified when we have company over. Oh, and then there’s the never ending paperwork for all of the above, and the fundraisers for Diabetes Camps and Transplant Olympics, and the few committees that I’m on at the hospital to make it a better place for sick kids. It’s a lot of work, parenting is hard, and these extra health issues make time tighter and more stressful. I always maintain, though,that none of us know what we signed up for to be a parent, and we walk the path that we are given. Mine just happens to have a lot more medical intricacy than most.
The bottom line is that, ultimately, I’m the one that keeps it all together. I keep both the pantry and the medicine cabinet stocked. I make sure that appointments are made, met, and followed up on. I have the memory of all the medication, the insulin ratios, the carb count of numerous items, all that I can recall on command, along with most of Wendy’s current blood chemistries and her A1C. I keep the ship afloat, so to speak.
So what happened when I was offered an opportunity to go with a group of students for a week to Central Europe to study the Holocaust?
Well, to put it bluntly, I panicked.
The thing was that I really really wanted to go and had a lot of offer my students: I used to live in Central Europe, I’ve written a novel about it, I know the cities, the people, the culture, the history. I’d be really good at this thing, leading students through holocaust sites and memorials. It would be intellectually fulfilling and meaningful to me, as most part-time jobs just tend to be place holders for someone else, this would be real work that would affect the global outlook of these students.
I hadn’t been away from my family for a week since Wendy was born, and certainly not since she had gotten sick. Michael had been away a few times, for a week or longer, but the longest I had ever been away was for four nights, and that was only with one child. Now we had two.
Michael was supportive of the trip. He said I should go, that he would handle it. So I set a schedule with all the names, dates, and phone numbers of the extra kids I pick up in the morning, or kids that come for an hour after school, all of the minutia that I probably hadn’t told him throughout the weeks. I stocked the fridge with easy meals (Michael doesn’t cook) and I made sure that there was enough medicine. I also made sure that there were no doctors’ appointments, outstanding library books, or gaps in child care.
Then I took a leap of faith and left.
And nothing happened.
By nothing, I mean that I had a fantastic time. I got to see a lot of places I haven’t seen in years, I got to be the “resident historian” on the trip, and I got to have real interaction with students, many of whom were going to Europe for the first time. I missed my family, but they had a normal week, with all of their activities and events. No one landed in the hospital, no one had an emergency. It all went smoothly.
This fall, I was asked to go again over spring break 2016, same cities, same schedule.
I said yes.
And, predictably, I panicked.
I guess that I’m a little bit of a control freak. As long as I have everything scheduled and monitored, I feel like I’ve got the best chance of keeping Wendy out of the hospital. Fortune favors the well prepared. But being in Europe fosters all of the “what ifs” in my life. What if she gets sick before I leave? What if she gets sick while I’m gone? What will Michael do? Who will watch Penny? How long will it take me to get home? Will my family feel abandoned?
Seriously, these things run a loop through my mind, along with the accompanying guilt and worry.
Having said that, I know that Michael is incredible and capable. I know that we have a caring community filled with people who would help if there was a problem. And I know that we have family that can fly in if necessary and get there before me. I also know that Wendy’s in a really good place, that her health has been stable for a while, and that in the future it may be more questionable for me to leave, right now it’s a safe wager to go.
But as the Alpha Parent, it’s really hard to let go of the worry and guilt, which ultimately lead to doubt.
It’s the doubt that I have to overcome.
(Photo: The John Lennon Wall, Prague)
“Life is what Happens when you’re busy making other plans.” –John Lennon