Finding My Sense of Self While Parenting a Child With a Chronic Medical Condition

I am a woman.

I am a body that created a human and fed that child in the first months of his life.

I am a wife.

I am deeply grateful for the most amazing partnership with my husband.

I am a mother.

I am proud of myself for creating, birthing and raising this beautiful child.

I am hard on myself for not doing things perfectly.

I am a mother to a baby with special medical needs.

I am sad that my first year as a mom was marked with so much confusion, heartache, and tears.

I am so grateful for my son for teaching me patience and a depth of love I never knew existed.

I am a daughter.

I am more sensitive to my parents’ feelings after becoming a parent myself.

I am a friend.

I am often feeling guilty about not being a better friend.

I am a physical therapist.

I am a better physical therapist because of my experiences as a mother.
I am a worse physical therapist because I am so damn sleep deprived.

I am a multitude of roles that make me me and that define me as a person, but I am not the sum of all my parts. Sometimes I am more. Sometimes I am less.

At times I am lost. At times I am tired. At times I am helpless. At times I feel that I fall short in my roles as mother, wife, physical therapist, daughter and more.

mom and young son at the pool
Amy and her son

But other times I can look in the mirror and know I am the best version of myself at that moment. I am not currently competing in triathlons because I am busy running an ultra marathon of medical diagnoses, doctors appointments, medicines, fights with insurance, breast pumping, dishes, more dishes and even more dishes. I did not go in to work today because my son needed to go to the ER instead. I am not able to attend social events and dinners with friends because of my son’s medical needs at night. I hope my body and professional and personal relationships stay strong through this time. But at the end of the day, I am my son’s mommy, and I am my best version of myself because I am available to him.

I am vulnerable by sharing my feelings.

I am empowered by sharing my feelings.

I am growing and evolving, ever-changing because of my experiences.

I am at the core the same person I have always been.

I am.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? Check out our Submit a Story page for more about our submission guidelines.

Find this story helpful? Share it with someone you care about.

Related to Chronic Illness

Kathy Soppet’s husband and children

To My Husband on Father’s Day: What Blue Means to Me as a Person With Chronic Illnesses

I have always loved the color blue and all of its hues. It is endless skies and vast rolling oceans. It is beautiful, comforting and a part of me. It inhabits my wardrobe, it inhabits my dreams. It is the color of my December birthstone. It is a constant companion. I don’t ever associate it [...]
woman standing in front of building at UCSF

The Skills 'Lifelong Patients' Can Bring to the Workforce If You Give Us a Chance

As I sit in my office reviewing my calendar for the next month, I’m plagued with concern. I have four medical appointments lined up in the next two weeks, and worry about the effects that can have on my job. I’m lucky to have a flexible and understanding boss, but I constantly worry about my [...]
A young woman lies in bed.

To the People Who Tell Me, 'It Must Be Nice to Lie in Bed All Day'

I know. Ideally, nobody wants to have to work. So, while my lying in bed for a good portion of the day must seem appealing to you — I can, hand-on-heart, tell you my chronic illnesses are not. Do you know how exhausting it is to just lie in your bed, only able to muster [...]
A slender woman,with long blonde hair in a straw hat with large brim,blue shorts and blue t-shirt,on the shoulder woven straw bag,admiring the sunset while standing on the beach near the sea

I Am Not Ready to Show My Scars and Tubes at the Beach, and That's OK

So here’s the thing. My body is constantly changing and being modified in some way in order to survive. We add some extra parts, we take out the extra ones, we exchange those that are faulty. With each change, I have to reconnect myself to my body and remember it as my own again. That [...]