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.
Love,
13 Comments
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Heather Ellis
Beautifully said!!! To hear of places wanting to eliminate DS makes my heart hurt.
Dylan has been the greatest gift our family could have asked for. I am so happy that he chose us to be his parents and couldnt imagine our lives with out him.
So proud of all the work you are doing to change the way a diagnosis is delivered.
We truly are the Lucky Few! -
Carol
Thank you Jack!
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Dawn
Wonderful story
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Angie hageman
My aunt shared with me that she had seen the story on CBS and I thought she clearly had to have gotten it all wrong. Something that horrible couldn’t possibly be celebrated on a national news story. Then I found a link and watched myself. So sad that such little value is placed on human life. Keep up your amazing work!
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Annadell
This is beautiful! I tell my daughter that God created people with special needs just as special and beautiful as He created her and that they are still PEOPLE worthy of love. I’m trying to teach her to view those with special needs as she would anyone else, to see the person and not the disability or diagnosis. We are all fearfully and wonderfully made in our own unique way 😊 I hate that anyone would try to kill off such a special population of people… people with Downs have been some of the sweetest, most beautiful souls I’ve met. And I know that their families wouldn’t change a thing about them.
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Nina
I keep thinking about the recent story of Grace and Arc’s Value Village, and the beautiful young lady that she is, also the young lady at Bethel who wants to be Miss America. These are examples of great potential that would never have existed if their parents had chosen termination. I was recently at a wedding and had a fabulous time dancing with two young adult men that had extra chromosome. They danced all night and had such a great time. They exhibited joy and had everyone dancing along with them. These human beings are amazing and wonderfully made!!!
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LeAnn Johnson
Carissa,
My name is LeAnn Johnson and as our beautiful son was not born with down syndrome, your words make perfect sense to me in your latest blog. Our sweet boy Jacob was born with multiple disabilities which I will not even explain because as you say it does not matter. The Iceland story you posted made me so incredibly sad that families are possibly losing out of the love of a beautifully special child.
I received your name by the way from Becky, a nurse at Gillette Children’s Hospital where we did pretty much all of Jacob’s medical care. We very, very recently started our own non profit as of August 10th of this year(which would have been our son’s golden birthday). We wanted to find a way of honoring our son’s memory and helping other families that are in similar situations caring for a child with disabilities. You see, after a long battle with illness, our son passed away at the age of 7 years on June 15th, 2015. His loss in one word is painful. I never knew pain until I was no longer to touch, hug, or kiss our beautiful boy again. His disabilities meant nothing to us as I think Jack’s Down Syndrome means to you. It is just love. That’s all. No other way to explain it.
Our goal is making baskets created with items that brought us comfort throughout the years as Jacob was hospitalized. We have delivered a few which is how I learned of you from Becky. We plan on focusing on Gillette Hospital-The PICU initially as that is where Jacob was always sent due to his special needs. I have a lot of work to do on his current website which I have neglected, to take some time to care for myself, and the struggles I have been going thru after losing him. I have accepted slow is ok though. I want to make sure I am honoring Jacob in helping families the way that he would be proud.
If you would like to read more on our son or connect, our site is FromJacobWithLove.com.
Take care and much love,
LeAnn -
Sue
Jack, you are a very beautiful young boy. I believe if you could have spoken, you would of used those very same words. God bless you and your family. By the way Jack, remember, you are perfect in God’s eyes. God doesn’t make mistakes! So wonderful to see these words open to the public.
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Sarah Hayward
Thank you so much for this. We have a beautiful little girl with Down Syndrome. We adopted her at age 2. Most people were very supportive. But I’ll never forget the lady who walked up to me and said "Isn’t it unfortunate that you couldn’t adopt a ‘normal’ child!" To which I replied "If you ever meet a ‘normal’ child, would you introduce me? I’ve never met one!". Our daughter, Ronin has made our lives exciting, scary, busy, and unforgettable. She is now 11 and I wouldn’t trade one minute of the time we’ve had with her. Thank you for advocating for all of our children! I just simply loved this.
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Lynn
Beautifully stated. See my basket! Wish I could send a picture of my 3 handsome boys and their beautiful sister, who just happens to have an extra 21. They adore her! We all do!
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Jim ogura
We are all different but we are humans. God bless those with Down Syndrome.
Tracy Niles
I was appalled by the article on CBS News. Our Grandson joined Jack in the awesome Down syndrome community. I know he is destined do to great things in his life. Iceland you are missing out on fantastic people! Tracy and Dennis Niles