As my children are getting older they seem to create elaborate stories of why they didn’t clean up their room or complete any other task on their to-do list. I’ve tried creating songs that help keep them focused, however it is hard to make the toddler “Clean It Up” song relevant for two teenagers. Despite my cheerleader-esque pep rally attempts coupled with brightly colored notes, which I strategically tape on mirrors, doors, phones and computer screens they somehow don’t see the list. I trip over my children’s shoes left in the hallway during my late night bathroom visits. I shudder when I think about the times I survived my feet being shanked by lego pieces hiding in the carpet. Maybe there’s a chance I could join Cirque Du Soleil due to my cat-like reflexes, navigating the indoor slip-n-slide made from discarded socks, melted ice cubes, lotion and mystery substances on the bathroom and kitchen floor. Adding that to having bottomless laundry hampers, and why does everyone expect to eat more than one meal a day?
Even though I have HAE and chronic pain I have the same challenges being a mother. I have learned through motherhood that tears will fall. I also learned that laughing is perfectly okay. The lessons I’ve learned from being a mother have helped me to be more patient, smile and even laugh at frustrations of life. I’ve learned to apply these same lessons to how I deal with the difficulties of my illnesses.
When I share personal stories about my illness online or at speaking engagements, I’ve been asked how can I smile or even laugh? People have questioned whether my medical problems were really difficult since I post pictures and videos of me laughing and smiling. In the early times of my diagnosis I asked myself the same question.
I can understand there’s nothing humorous in my stories about almost dying in front of my children or in the hospital, seeing the scars from my tracheostomies which are difficult to look at, the countless times I was on a ventilator, and being bedridden often.
The times medical staff and others called me a liar and a hypochondriac is infuriating. Reading the rude and nasty comments under a news article written about me and my disease was hurtful. People actually questioned my love for my family by keeping myself alive. They thought that if I really love my family I should die to stop their financial and emotional suffering. This is just a small part of the rude and hurtful ways people have talked to me. After hearing these stories, I understand why people question how I am able to still laugh and smile.
No longer did I want to be held captive to society’s ideas on how I should show my emotions. I decided not to waste another second trying to justify to people all the reasons why I should live. Chronic pain and HAE will always find ways to steal precious moments from me, my loved ones, and the people I want to help. Once I mourned my old life, and accepted the pain and disease in my life, strangely enough I found a sense of peace. I have chosen to make life-affirming promises to myself. I make an effort daily to observe and enjoy the beauty around me. I have learned to appreciate the big and little moments with those I love. I desire to use my stories to inspire others to live a life without regrets and to love themselves. I will continue to smile and laugh, acknowledging the humorous moments in life. When I’m smiling and laughing it doesn’t hide or diminish the pain and suffering I endure everyday. For those who ask if it’s okay to laugh and smile, my answer is YES. For when I laugh and smile it is a testament to the miracle of me being alive.