Adaptation: It’s Time Consuming

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.

Adapting to New Environment

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?  

9 Comments

  1. Paula G

    What a wonderful post Debra. I would concur that you have a right to your feelings and all that you need and are going through. Don't ever let anyone else tell you otherwise (like "it's no big deal" or "you shouldn't feel that way" or "hide your emotions"). If it is how you feel it IS REAL. You are both teacher and student here and from all I read, doing it grace-filled. Not easy but with grace and compassion. Many hugs to you all and can't wait to speak with you! Hugs
    -Paula
    My recent post 5 Tools to Cultivate Mindfulness in Your Business

  2. Sheri

    Well, friend, you and your loved ones have been in an earthquake. I'm sure feeling knocked down is how it feels b/c that's what has happened. I can't speak to the intimate way new concerns now inhabit your thoughts and feelings as a mom and yet, I know you to be resilient. And so will your child be also. Time to find your way in what there is to learn, time to put it into practice, time to reorganize around it all…it's a lot. LOT. And your brilliance-based way of looking at life is being expanded every time you check levels, every time you draw cc's.
    You are awesome and you are teaching your child how to do life by example in a deeply, darn adequate way. I am so pleased you're not shooting for perfect! Huge hugs to you and your lil man! xoxo ~Sheri

  3. Kristen

    Same here. I am here for you. This is a really well written post, and your comments about people dismissing your hurdles and subsequent emotional drainage are not supportive. I'm here with an ear and also to treat you super nicely if there is a day or evening when you get a small break and want to take care of yourself.

  4. Josh

    I feel terrible that we haven't seen much of each other the last few months, especially in your time of need. I can definitely relate to the theme of your post about revising priorities and adapting to change. I agree with @Julia above that you are a beautiful writer…I hope someday you write a book!

  5. peaceofmymindparent

    I'm glad you have a place to reflect and share what you're experiencing. It sounds like it could be, and is at times, lonely and scary to go through the adaptations you're going through. If I have been one of the guilty parties who ever made you feel dismissed, I apologize. I should know better. I'm thinking of you and appreciate your sharing of your experience.

    • Debra Woog

      Definitely not. You do know better. H-d knows you've learned, the hard way.

  6. Julia

    You're a beautiful writer and though I have never experienced this particular 'adaptation' your words make me understand so well. Your language is so clear and so descriptive — which I guess helps me relate your feelings to my own life. Thank you for reminding me of the importance to just listen — not try to fix or mitigate the pain for my own interest.

  7. Stef

    In reading this what came to mind is this is what it must have been like for my dad (in some ways) when my mom's MS got worse and worse. I personally haven't yet experienced a transition that brings with it this level of adaptation required.

    I guess I find myself hoping for everyone's sake (yours, A's and K's) that it can at some point become more "routine" and maybe "predictable." The words "no big deal" wouldn't have crossed my mind though. No one can know what is a "big deal" or not unless they've been through it — something similar I mean. "You only know something if you live it (quote by Marie Forleo)."
    My recent post SPARE ME The Undertaste!

    • Debra Woog

      T1d never becomes entirely routine or predictable. Maybe it's just as well this way – it keeps us always on our toes.