Book Nook - I Couldn't Tell You

When Lily Deschamps was born, the odds were stacked against her. Cloacal anomalies, a single kidney, and a series of grueling surgeries defined her early years. Doctors offered few assurances. Her parents held their breath through each procedure, each recovery, each new setback. Today Lily is 24 and living a life she once couldn't imagine — but the road there nearly broke everyone who loved her.

Her mother, Sarah Deschamps, spent years as a teacher and administrator in both the United States and Japan. She knows something about resilience. But nothing in her professional life prepared her for the emotional and psychological weight of raising a medically fragile child — managing crises, holding the family together, and quietly losing herself in the process. Now, with her second memoir I Couldn't Tell You, Sarah is ready to tell that full story.

I had a chance to interview Sarah to learn more about her journey.

What are some things people may not realize about parenting a child through repeated medical trauma?

It is never-ending. When you are not worried about a surgery, you are worried about scheduling one, or are worried about preparing your family for one. When it isn’t about hospitals, it is about clinic visits or medical insurance or understanding complicated diagnostic numbers. It is also filled with worrying about when you can fit in the laundry and a home cooked family meal. Parenting a child through medical trauma for us involved getting through an evening at home where up to two hours a night are spent doing a medical procedure that is risky and complicated. When you are all done with all of that, it is about trying to think about how to keep yourself and your children's and your partner’s heads above water. It consumes every minute of every day. 

How does chronic illness affect the entire family?

It affects every aspect of a family. It starts at the smallest level when you have to decide how to support your other child who doesn’t have a chronic illness. You wonder how can you create a life for that child that is beyond the illness. How do you choose between going to that child's important basketball game or going to the critical doctor’s appointment? The same is true between the parents. Having steady income and medical insurance are critical when you have a  child with a chronic illness. How do you decide who gets to work, or how do you manage two careers? How do you divide the normal tasks of feeding the family and doing the laundry and tucking the children in bed at night when at the end of the day there is no energy left?

What is medical PTSD and how can parents and caregivers take care of themselves while navigating their child's medical issues?

I can describe my caregiver's PTSD. Soon after my daughter was born with a rare disease that required her to have seven operations before her seventh birthday, I started a notebook and filled it with every detail about every medical term related to her condition. I had files, alphabetized, covering every procedure and what was coming next. My life was consumed by preparing for, having, and then recovering from surgeries, and I proudly organized it all. 

In the hospital during those operations, I am Herculean. I thrive in a hospital, and bring my best self to a medical crisis. I can do everything from talk in detail to doctors, to understand medications, to assist with procedures if needed, and even to fluff a pillow behind my daughter’s head. When I’m in a hospital, I’m fully present and can do anything. 

About two days after we leave the hospital, when my daughter is healed and healthy, when the crisis is over, those skills are not necessary anymore. No one is paying attention, they have all gone back to their own lives. That is when I get my PTSD. I become depressed and lethargic. I cry a lot. It is as if a piece of me is missing, so I start to relive what happened in the hospital and become angry with myself for not doing everything well enough, for not helping enough, for not being professional enough or emotionally connected enough. This can cause a panic attack where I lose touch with reality. All of this is described in my second book, I Couldn’t Tell You. 

The key to taking care of yourself when you have caregiver PTSD is to realize it is happening, which for me was incredibly difficult. My life had required me to have those over dramatized emotions to get through the day because I was saving my daughter’s life over and over. When I hit bottom, which meant I stopped seeing friends, stopped going out, was absentminded at work, got divorced, was disconnected from my children, and I was truly alone, that was when I finally looked for help.

I had sworn, as the title of my book indicates, not to tell anyone. I was supposed to be the one who kept it all together and was always smiling and happy and driven. I was the one who saved my daughter’s life. I wasn’t supposed to have problems, even though my life was falling apart around me, I didn’t see it. When I was at the bottom, I somehow found a therapist, and I saw her for a long time. She had me see a psychiatrist who, after helping in so many ways, gave me the best piece of advice. She said to trust my friends and family. She told me to tell them the truth. So, I finally did. 

How can families protect (their) mental health despite being in survival mode?

The most important thing when you get this devastating diagnosis is to educate yourself. I don’t just mean about the medical condition, but about how to live with it, how to have it be a part of your life, not be your life. A doctor told us when our baby had just completed her second (of seven) operations that this was a marathon, not a sprint, and that we had to take care of ourselves. I thought that meant doing everything we could to give our daughters the best chance at a good life. It is that, but it is also going on date nights with your partner, taking the family to a movie, playing games, and getting professional help. You need to have support on this journey because it is a million times harder than you ever could have ever imagined.