A Minute With Marqus
Marqus left us many memories – in the form of short stories, journal entries and sketches – that we plan to share over time. The goal of the Minute With Marqus has always bee to educate through the voice of a sike cell warrior. This month, we’ll highlight a journal entry from November 2010. He discusses “health years.”
Ashley Valentine, Loving Sister
Marqus during a 2015 hospitalization.
11-26-2010, 7:33 p.m.
I have been around for close to three decades. My life over this past 27 years has not been easy. My life is as good as it can be. This said, I don’t think my 27 years on earth would have made a day without my mother, father, sister, brother and nephew. I never really speak about what goes through my mind when sick. Film, my family and [a] small list of friends have kept me running.
My mother came up with a term called “health years.” Kids with disabilities go from babies to adults. When growing up in a medical system, our friends are the nurses, docs and people who keep us alive. People don’t know, but when you grow up with an illness that has no cure, life takes a new meaning. This meaning translates into ‘will this be my last day on earth with my family or will this hospitalization be my last?’ Sure you can say, ‘well you could walk out your home and get hit by a car and die.’ Step into the shoes of a world where that runs through your mind and the mind of your loved ones.
Francesca and Angelo Valentine during Marqus’s 2015 hospitalization
Children with disabilities get a real and raw look at life. We are surrounded by death and decisions that could take our lives. So, we tend to grow up very fast. When your life could end in a second, you can be very misunderstood and isolated. So, “health years” refers to us with disabilities. So, if you’re 10 years old, in health years you are 20 years of age.
A small glimpse into the family view is that term “our children’s tomorrow.” Mothers and fathers live with that in their hearts and souls. [Their child’s life] could end any day, so if you meet a family who has a child with any type of illness, take some time to talk to them and see how they are. Coming from a kid with an incurable illness, give them a chance to live their dream.
With a heavy heart and tear-filled eyes, we share this remembrance of Marqus Valentine from his family.
SEPTEMBER IS SICKLE CELL DISEASE AWARENESS MONTH
Although the nation is taking the next 30 days to speak up and speak out about Sickle Cell Disease (SCD), we as a national and global #rarediseasecommunity must speak about sickle cell every day of year.
We encourage you to have conversations with neighbors, co-workers, your congregation, with local civic and social organizations, even with healthcare professions, to educate people, to build empathy for this disorder.
To the Valentine Family, you have our undying love and unconditional support. @SCThalPatientsNetwork @SCTPN