My daughter has many diagnoses. But just recently, the more obvious one hit me in the face. It is the one that is slowly taking away her life.
It is the one that has no true “name” or diagnosis. It is the “mystery disease” for all her doctors, and can also be somewhat confusing as far as it being static or progressive. Of course, deep down, I know what is happening to her because I am her mom. But sometimes, it is easier to be in my “safe place.”
My safe place is not a physical place; it is a mental place. A place of denial and rest.
The doctors who see her once and diagnose her with cerebral palsy, helped me find my safe place. As do all the different doctors who each have their own opinion because the typical tests are showing that there is nothing wrong with her. This mental roller coaster has helped create my safe place.
It is so much easier for me to mentally pretend she is not getting worse. I am with her every day and I know deep down that I am helping her with many more things than I did a year ago. But on a day-to-day basis, the changes are not as noticeable.
Her pediatrician always puts me right back into reality. He has taken care of her since she was tiny and released from the NICU at 6 weeks of age. He sees the yearly regression, the loss of abilities, and how she is getting worse.
She just had her well-child visit. It was an eye-opening experience for me. It brought me back to reality and reminded me how scary things really are. The mental “rest” of the denial phase of grief is sometimes a hidden blessing and allows me the mental break I need. That gives me another burst of strength to face reality and continue on another day.
Visit the information on children with Multiple Disabilities, Rare Conditions or Who are Undiagnosed as well as Accepting, Grieving and Adapting.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.