As described in my first and second posts of this blog series, my family is in a new and unexpected phase of life. As we’ve begun adjusting to the life-changing circumstance of my son’s new chronic illness, I’ve noticed multiple, distinct layers of our adaptation, each a new source of time pressure in our already busy lives.
The layers of adaptation I described earlier include Revising Priorities and Reconsidering Self Care. In today’s post I’ll address the additional aspects I’ve identified. I’m curious to know whether, as you reflect on moments of transition you’ve experienced, these resonate with you as well.
Managing My Son’s Medical Needs
This is the obvious one. Taking care of my son takes more time than it used to. We have new routines and action plans that we follow daily. It takes extra time to get through the day now. Plus we have lots of appointments to travel to and attend, including Diabetes Nurse Educator meetings, nutritionist visits, social work sessions, insulin pump class, and doctor’s visits. And some activities that fall into this category don’t even directly involve A, like consulting with the insurance company, scheduling appointments, and stocking a myriad of supplies. Plus there’s all the thinking and analyzing that we do all day long – what caused him to go low? Why is he high now? Diabetes is a different definition of insanity: you can do the same things over and over and still get different results.
Supporting My Loved Ones
Another layer of adaptation I’m experiencing: helping people I love cope with the diagnosis. A. has feelings about having this illness, its impact on his life, and how he is handling everything. His sister K. has feelings about how all this impacts her; even though her health isn’t any different and there’s low likelihood that she too will have this disease, her life is forever changed by it. It’s my role as their mom to help them both express themselves. Typically they articulate and act out their concerns at bedtime, when I’m the most spent. We’ve been getting to bed an hour later than we used to.
Getting Farther Behind
My initial post in this series addressed this layer at length. In short, we each have only 168 hours per week, and that’s if we’re lucky. Given all these additional activities, lots of things in my life and business just weren’t getting done for a while there. I am grateful to have found fantastic new members of my Super Support Team to help my family and connect2 get caught up on the most important of these.
Educating Myself and Others
Then there’s all the learning. I’m still reading and learning as much as I can absorb about T1D. And an important part of my role as parent is to educate others who love him and/or work with him – at his school, Hebrew School, sports teams, playdates, medical centers, etc. There’s a lot to keep up with and to keep others in the loop about too.
Experiencing My Feelings and Coping with Others’ Reactions
Some people, including members of my family, have tried to help by telling me this really isn’t that big of a deal. They know, they say, because they’re aware of others with T1D. When they tell me this, I feel dismissed. They’re trying to take the weight out of the situation, but it’s not realistic. As I’ve connected with dozens of people with T1D in recent months, adults and kids, not one of them has said anything like “dealing with this eventually becomes no big deal; just wait six months and it will become so routine you’ll practically forget you have it.” Type 1 Diabetes is not like a crockpot; you can’t set it and forget it.
I’ve had a lot of feelings in the past three months, most of which I’ve struggled to express, either because I don’t make the time or because I’m just plain scared of them. As an extrovert, sometimes I can best get in touch with my feelings when I express them to others. Feeling ignored or minimized gets in the way. I am most grateful for people listening and validating however we feel in a given moment, just being present for us without judging our views or proposing solutions.
In sum, change is time consuming. It’s not just that now we have shots and glucose checks to do every day. This is a new world for us, far more complex than it may seem at first glance. Adapting to it takes time, perhaps even a lifetime. When you’ve entered a new phase of life, have you seen such layers?