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When I Realized My Daughter Doesn’t See My Chronic Illness

This upcoming May, it will be eight years since my diagnosis of gastroparesis. Looking back, I never thought I would go through and experience the things I have over the past eight years. My experiences have made me grow as a person. Several years ago, when I was really struggling with my gastroparesis, I often wondered what would happen to me based on what the doctors told me. I never imagined I would be at peace with my health condition, be happily married and be a mom.

On Christmas Eve, our daughter turned 4 months old. It simply blows my mind. She has been such a blessing to us. Motherhood is amazing. Over the years, I had doubted and worried what life would be like if we were to have children. Physically would I be able to do it? Would I be able to be a present parent in my child’s life and be active and involved with them? What kind of life would we/I be able to give our child because of my disease? Questions like this quite often occupied my thoughts.

Several weeks ago, I noticed that my gastroparesis was acting up. I began experiencing stomach spasms. Almost immediately, I knew it was time to go to the hospital. I had always wondered what would my child think about seeing me in the hospital. What would they think and would it bother them? Would it affect our relationship? As I was being taken back into the procedure room, I thought about how my disease was taking me away from my family. Instead of spending time at home making memories, we were at the hospital. I have always feared I would miss out on some of our child’s life because of my disease, whether it be piano recitals, soccer games or simply reading them a book before bed.

When I woke up after the procedure, I was greeted by my husband and daughter. After I got my bearings, I asked to hold our daughter. I was a mess physically, between the grogginess and the stylish hospital gown accompanied by an IV. I learned an important lesson. Regardless of how I feel or look, whether I’m at home or in the hospital, I will be my child’s mother. My disease does not affect or change that. She sees me as “Mommy,” she doesn’t see me as a patient with a disease.

After realizing that day at the hospital that my daughter will always see me as “Mommy,” I have tried to remind myself to live in the present and enjoy each day with our daughter. I don’t have the promise that I will feel the same tomorrow as I do today. So what if my housework isn’t caught up? It can wait. It is all about prioritizing my energy and time. Why would I want to spend the majority of my energy cleaning the house, while reserving very little energy for my daughter? Wouldn’t it be better to spend the energy and time with her? She will only be this age once. I can’t get that time back. Honestly, she isn’t going to care if our house isn’t the cleanest one on the block.

Something else that has occupied my thoughts since that day is my appearance. Our society today focuses so much on appearance. Anyone who has a disease or illness knows it can take a toll on your physical appearance. Some days there isn’t enough eye cream in the world to take care of those dark circles under my eyes.

I used to focus and spend so much energy and time on my appearance. But our daughter does not care if my hair isn’t fixed or if my face is without makeup. To her, I am “Mommy,” regardless of what I look like.

woman lying in hospital bed holding baby in her lap
Jennifer and her daughter in the hospital

Follow this journey on My Life With GP.

The Mighty is asking its readers the following: Describe a time you saw your disability, disease or mental illness through the eyes of someone else. If you’d like to participate, please send a blog post to [email protected]. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.