I’m a person, not a diagnosis.
*This is the best way for me to formulate a brief response to the recently published story by CBS News and eliminating Down syndrome in Iceland. The weight of this has been so emotionally draining. I want you to deeply think about what it is like to have to defend that your child’s life has worth to the world. This is the part of this journey that is exhausting and why we live our lives so publicly. And so we pull up our boot straps and march…I look at Jack and can only think this is how he would respond…
Hi, I’m Jack. I’m a person, not a diagnosis.
So when countries talk about ‘eliminating Down syndrome’, they are talking about a human life uniquely created like me.
I am not a mistake. I am fearfully and wonderfully made. I happen to have Down syndrome which basically means I have an extra 21st chromosome in each cell of my body which effects my development, but certainly not my parent’s love for me and what my life has taught them.
My mom shouts my worth because she believes that a lot of people make assumptions about my life, placing a certain value on me, simply because of the diagnosis I have.
Not because they know me.
She believes this is absolute craziness and had to start Jack’s Basket to remind people that every life is a gift and that families deserve a better start to this journey, which includes hope and encouragement, not a death sentence. Providing families with up to date resources from amazing Down syndrome organizations including DSDN, GiGi’s Playhouse, DSAMN, and NDSS. She’s made it her personal mission to educate medical providers on the emphasis of the language that is used when delivering the diagnosis, providing research by Dr. Brian Skotko revealing best practice for delivering a diagnosis to new and expectant parents. I’m sad to know that the power of assumptions has led to a belief system that my life does not have worth and babies prenatally diagnosed wiith Down syndrome are aborted, and in some countries up to a 100% termination rate. My mom says this is a genocide and history has proven that that has never worked out well for many. Forgive them Father, they know not what they do.
I assure you that I am not suffering like what was recently implicated in the story, explaining that the potential life of someone with Down syndrome will be a life of suffering and complications. My parents have expressed that the journey of parenthood is filled with highs and lows, which I trust them as they’ve had great experience raising me, my brother, and sister (who both happen to have one less chromosome than me). When my mom watched the video, she was appalled to hear the nurse (that assisted the abortions) say that we have the opportunity to plan out our lives as parents. Funny thing is when talking about unexpected plans and raising children…I don’t often see people like myself in the media being arrested for sexually assaulting others, shooting someone, becoming an addict or thief, committing adultery, experiencing teenage pregnancy, or running over a group of people. But babies with Down syndrome will have a life of suffering and complications? Why is the most dangerous place for a baby like me in a mother’s womb? My mom said there are certainly people in the world living lifestyles that are filled with suffering and theirs were a result of daily choices or habits, mine was just because I was conceived. She tells me often that no matter the choices or number of chromosomes, each person is God’s masterpiece, created in His image to do great things and she just wishes others saw people that way. But it sounds like that isn’t the case as people have decided to use the power of eugenics to screen people like me out. Forgive them Father, for they know not what they do.
Just for the record, I have introduced my parents to a beautiful new life and community that they would have never known if I were not here. I make different beautiful. My family doesn’t take little things for granted. I work hard, and I love and encourage others to be their best. It may take me longer to accomplish things, but I will do them, and my family and friends will celebrate with me.
I daily remind those around me that we were ALL created with a purpose. I just want to be loved, valued, and respected just like you desire to be.
My parents are so proud of me and are grateful for my life. They always talk about the positive impact that I’ve had on those that know me. I also have many, many friends rocking the extra chromosome and it’s evident to me that their family has a deep love for their child with Down syndrome.
Because of the lack of knowledge and experience knowing individuals uniquely created like myself, along with personal bias and assumptions of people in power, certain parts of the world will miss out on a whole lot of love and joy. My heart hurts for you. My life is not to be feared, I can assure you, ask my parents. Simply stated, give these precious babies a chance to change lives for the better, like mine has.
Thanks for viewing me as a person, not as a diagnosis.