My stepson, Marcus died last Friday, thankfully in his sleep. I was never that close to Marcus. I married into the family. I know that's no excuse, but it is what is. I think to him, I was the Boogie Man. It was always a battle to get him to use his sippy cup and get enough fluids into him. Whenever I asked him to drink he always drank. He sometimes ignored other family members, but he always drank for me. I'm sure to him I was an unknown quantity, and looked at me with a jaundiced eye. You see Marcus had a severe disability, both cognitively and physically. He was born with a thoracic neural tube defect- spinabifida needing 24 hr care. He was wheelchair bound, his verbal responses were monosyllabic, but knew more than his verbal responses would indicate. Perhaps, he was a person limited by his body to physically respond. A person trapped inside his unwilling body.
Marcus's wellbeing and care was guaranteed by a unparalleled loving family. Having married into his family, I think my feeling sorry for Marcus got in the way of me loving him.
When Marcus died my overwhelming emotion was a feeling of helplessness. I knew the pain and anguish Tracey( my wife and mother to Marcus) was going through. My helplessness for my inability to take away her pain, to protect her from the pain. I cried for Marcus, but more for Tracey and the amount of grief she had.
Another emotion was one I suffered in silence. That was the feeling of guilt. Damn, I'm a doctor, I knew there was something wrong with Marcus- his listlessness he wouldn't even listen to my pleas to drink. He just didn't look right. Yet I didn't say anything. I still don't know why, but it torments me. My silence was deafening.
In the last analysis, at least from my standpoint some good came from Marcus's death. I learned that guilt often arise from the regret of things left unsaid. But more importantly, we protect the things we hold dear, the things we love. Marcus's death made me realize the love I felt for Tracey. I think it is sad that it often takes a major event in our lives for us to realize the value of what we have.
A very moving tribute. You should take comfort in knowing that Marcus, like all of us, had a finite life’s trajectory. Please don’t allow your guilt to supersede the great care and love you showed him.
Thanks Cus for you and Pam's kind words. They mean alot to me