Jenny Glick is a therapist but these are lessons she’s learned as a married mom of a son living with diabetes.
I was privileged to be the keynote speaker at an event at the Denver Aquarium last week. The event was sponsored by the American Diabetes Association (ADA) for parents and caregivers of children with type 1 diabetes (T1D).
Many of you who have followed my work over the years know that I have a twelve year old son with T1D and we have been living with this disease for almost 9 years. Chronic disease introduces an entirely new dynamic into a family and into a marriage. Like most families, I was unprepared for the emotional stress that this illness would put on my own heart and my relationship.
I was invited to speak at the ADA on the “emotional aspects” of T1D. I asked the coordinator, “Is it okay if I talk about the tough stuff…the stuff that usually is not discussed?”
She said, “Absolutely!”
So, I did.
I started the conversation by sharing that I spent 4 years with my son, from ages 4-8, afraid that I would wake up in the morning and he would be dead.
Silence in the room. Followed by a dozen or so women quietly crying in their napkins.
There it was.
Honest and naked fear exposed in public.
I could feel an exhale in room…I had said what many of us had felt but what we never would say aloud. It was the truth. My truth at least and the truth of many parents who live with this and other life-amplifying illnesses.
I went on to discuss the tremendous strain that diabetes had put on my marriage, our finances, the expectations that we had for our child’s future at the time. While I threw myself into learning how to count carbohydrates and give shots to my 4 year old, I was an emotional wreck and not sleeping to boot (most parents with a child with T1D get up during the night to check blood sugar levels).
As I shared my own trials during those first years with the conference participants, I saw heads nodding in agreement and understanding. I moved on to talk about different ways to stay connected to yourself and to your partner during those first intense years of diagnosis…my message:
“It’s hard as hell but you can learn to thrive in it!”
Afterwards, a number of individuals and couples came up to talk with me about their own experiences…how they felt so alone trying to keep their child alive and healthy; how their family or friends did not quite understand because their child “looks normal” in all other ways; and how they were overwhelmed and afraid as they tried to grapple with how their lives now looked with diabetes.
There are millions and millions of people who have children that live with chronic conditions and type 1 diabetes, fortunately, is one that can be well-managed and most children will experience normal and healthy lives. And yet, the emotional ride of this, and other chronic conditions, is not one that any parent is prepared for. We do our best, we show up,and some days we lay down and cry from the difficulty.
Tip #1: Get to know your own fears
If you don’t know your fears, you will be running from them. When I was terrified of my son dying, I was a CONTROL FREAK about so many things which made me a real peach to live with (sorry husband!). In the diabetes world, we are taught about CONTROLLING as much as we can: carbohydrate intake, protein intake, fat intake, insulin ratios, basal rates, too much activity, not enough activity, etc.
It is a real skill to learn how to have manage the particulars but also be nimble in the process and relax into the unknown of it all.
Tip #2: Get to know your partner’s fears
Ask your partner what she or he is afraid of…even if you are not married but co-parenting your T1D child. And after you ask…really listen (see Tip #3).
Tip #3: Learn to listen to your partner’s fears
This means listening and not trying to fix, minimize, or “make better” in some other way. Learn how to be a companion to your partner as they allow themselves to be vulnerable to their own fears…and just hear those fears. A good phrase to use is, “Tell me more about that.”
Often, in an effort to try and make it better for our partner, we say things like, “You are doing everything you can! Nothing bad is going to happen to our son!” It’s not so much about something “bad” happening but that the game has changed unexpectedly and having a hard time with the new rules is normal.
Tip #4: Get connected and stay connected
Finding support networks is necessary for us as parents and especially for parents with children living with special needs. I heard so many people last week tell me that they felt alone and like no one understood. As human beings, we desperately want to be understood…find your people and stay connected to them.
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Photo: Christiaan Tribert/Flickr