I am writing about a very touchy subject, but one that most of us go through multiple times in our child’s lifetime. It hits me about three times a year, but I think the hardest time is birthdays.
As much as I don’t like to compare children (I am an advocate of individuality and accepting differences), I am human and still grieve for what I thought was “supposed to be”. So when my daughter, who has global delays, has a birthday, I am reminded of how the milestones that I assumed would be met at specific times are not being accomplished.
She is turning 13-years-old soon, and I am sad that she is not doing things that other 13-year-old girls are doing: giggling and sharing secrets with me and friends, crushes on boys, school dances, and wanting to wear makeup—all the things that I imagined she would be doing at thirteen.
Instead, she is losing her ability to walk, doing respiratory therapy daily, and hoping to stay out of the hospital for this year’s birthday. It just does not seem fair that she has to lose skills instead of gaining new ones.
I get sad and I get angry for what could have been and for what is being taken away from her. My best friend (and greatest support) and I call these times “little funerals.” That’s what it feels like each time I am hit by these emotions. I know it is normal and okay for me to have these feelings, but then I feel guilty for having them. It is tough to experience and it is okay to grieve and/or seek support or therapy.
I process my feelings, have my “little funeral,” and then move on and accept what it is. Then I can get my fight back and gear up for another year of my daughter fighting hard to keep what she has been given!
You can find more information about grief on this website.
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.