The most awkward question a person can ask me is a simple, common question you ask someone you don’t know. “Do you have any brothers or sisters?” This can put the person I just met in an uncomfortable position because I have to say “yes, but he died toward the end of my 6th grade year, he had cerebral palsy.” It would feel disrespectful to not acknowledge that I had a brother, so even though it appears to many that I grew up like an only child- I didn’t.
He lived to be 14.
He couldn’t walk or talk. He had a feeding tube. He wasn’t supposed to live 3 days and he lived years beyond what was thought possible.
He had to wear diapers. Sometimes he would bite his fingers or accidentally yank out his feeding tube because he didn’t have control over his reflexes. He could smile, laugh, cry and communicated joy and sadness in his eyes.
I will admit sometimes I have just answered, “I don’t”, in an attempt not to create an awkward moment with someone I’m not going to see again.
Then a question will come up about my parents and I again create an uncomfortable moment by sharing that my mom died of breast cancer in 2004. The person immediately feels horrible for asking what should have been a lighthearted question and I again feel like “Debbie Downer” from SNL.
My mom detected her breast cancer late, partly out of her despising going to the doctors after years of trips to the hospital with my brother. Pneumonia was a common sickness for my brother and ultimately ended up taking his life.
My mom was not supposed to live until our wedding day but ended up dancing the night away at our reception.
She had two more relapses of cancer, a tumor on her spine the size of a golf ball and later cancer in her bones in her arm. She prayed that she would live to see her grandkids. She got to meet one of them. He was two years old when she died.
So how has this shaped me? I have experienced death at a young age and all the challenges of my younger years revolving around a special needs child, as they should have. My parents did the best they could to try to balance attention and trying to do things “normal families” do.
In my late twenties, I lost my mom; the person whose advice I now ironically was willing to receive, along with cooking instructions and all things domesticated that I had NO DESIRE to learn growing up.
When you loose someone you love, you grieve not only the person but also all of the moments in life that you will not get to experience with them.
I remember sitting at my mom’s bedside in the final weeks of her life, asking her if there was anything that she still wanted to do. She replied with sadness that it was too late. She had always wanted to go to Hawaii but she was too weak. Trips to the bathroom across the hall took all of her strength and left her in so much pain because of the cancer in her bones. She knew her time on this earth would be ending soon.
So how have the deaths of my special needs brother and my mom affected me? Having half my family members in heaven has made me want to LIVE!!!! I don’t want to live with regrets about things I didn’t try, places I always wanted to explore, things I wanted to experience. When I get out of my routine I feel more alive, I feel like apart of me is awakened. I will not wait for life to pass me by. It is up to me to experience all I can out of this life before I’m reunited with my family in heaven. I want to live and love fully without regret. I witnessed strength in both my mom and brother to face the fearful and to love. I have observed first hand that life is short and not guaranteed for any certain length of time.
I love the quote from Maximus in the movie Gladiator “What we do in this life echos for eternity.” Along with many other amazing qualities, my mom had an adventurous spirit . As I live my life, I feel like she is proudly looking down on me until I see her again.
Both of my family members left this world before they could experience so many things they would have wanted to. Maybe I am making up for all of us.
I am constantly adding and crossing experiences off my “bucket list” or maybe I should call it an “adventure list” that I want to fulfill instead.