Every week Gabriel gets a big dose of Chemo called Methotrexate. When he is able to take the full 100%, his dosage is 13 pills. They are tiny and yellow. We all hate them. We get them ready away from the kitchen and in a disposable container.
In these three years Gabriel has developed a taste for certain things and a distaste for others. His Wednesday routine is noodle soup and shrimp cocktail. We oblige when we can. We start him off with an appetizer of Zofran to lessen the nausea. And we usually start our night off with wine to lessen ours.
Later tonight he will take 6MP, this is the cute name, it has a longer more scientific name but everyone in our world knows 6MP.
When this all began Gabriel couldn't swallow pills. Now he is up to swallowing 15 in a few minutes.
June 2 cometh.....my Mom's birthday. Gabriel's diagnosis day. I remember I hated telling her because I didn't want to spoil her birthday. We will certainly never forget this day and most of the events that happened on this day. They are forever etched in our mind banks. I remember talking to Cheri Kay, our most beloved PT. I remember wailing in anger at this horrible lottery we had won. I remember Cullen and I holding each other up in the hallway away from our kids eyes while the sweet nurses in orthopedics filled them with juice and graham crackers from their stash, oblivious to the horror story they were about to live.
Later, we would talk about how similar hearing this diagnosis was to hearing the diagnosis that our baby had Down syndrome. Time stops when something unexpected happens. I remember after Gabriel was born talking to Lisa my best friend who had just had a baby a few weeks earlier and we cried, I remember talking to my Mom who told me it was all ok and I cried. Cullen and I cried, we shook our fists at the sky. Our biggest worries were how the world would treat this baby, this child, this person. How sad this is.....
Now I can see this in such a different light. I so wish I had had a different view of nature and life 18 years ago. Much of the world is not nice to people with Down syndrome but this is not a reason to grieve, this is a reason to embrace change. Change of the world, not people with Ds.
I want the diagnosis of your baby has Down syndrome to be a world away from your child has cancer. They are nothing similar. Nothing. I want this news of having a child with Ds to change from sounding like a death sentence.
It is not a death sentence.
Having Down syndrome is nothing to fight. It is something to embrace. Something to embrace wholeheartedly. Love it! Live it! Let people with Ds be!
Having cancer is something to fear. Cancer can be a death sentence. It is awful. Cancer is something you will fight with every tissue of your being. I know my son has fought Leukemia like a man on a mission. He also has embraced his personhood like a man on a mission.
This is the only thing similar in his two diagnosis'.
One diagnosis is evil and is called cancer. The other diagnosis is good and is called Down syndrome. Never forget this. I hope we can see the diagnosis of Down syndrome change from one of grief and sadness to one of life and love! #leukemiasucksdownsyndromedoesnt