I agree. They wanted to do an amniocentesis on my wife with our second child.. we discussed it and we said no. If a test is not going to change your course of action, why even take it?
I know many families wrestle with those same questions when testing is offered. I think every family approaches it differently, but those conversations can be incredibly emotional. We said no to our amniocentesis as well.
And thank you so much for the coffee — that was such a thoughtful surprise and means more than you know!! ☕🤍
Anna, your love for your son shines through every word. “I would choose him a thousand times over, in every version of every life” brought tears to my eyes.
Thank you for sharing your story with such honesty and grace, and for reminding us that every person is more than a diagnosis.
Darlene, thank you so much!! That line came straight from my heart because it's exactly how I feel. I would choose him a thousand times over, again and again! Theo has taught me more about love, resilience, and perspective than I ever thought possible. I'm so grateful this piece resonated with you 🤍
Well said!! I do believe the fault is within the systems. My son was born 23 years ago and I was in the same situation, hearing the same things that parents are hearing today. Have we not learned anything? Why have we not grown as a society? Medical advancements, research and the internet are now at our disposable to know more than 23 years ago. I am so angry that this is still happening.
Debbie, this is exactly what I keep coming back to. Twenty three years later and parents are still hearing many of the same messages.
We have more information, more research, and more opportunities for connection than ever before, yet so many families still leave those appointments feeling hopeless.
Thank you for sharing your experience and for adding your voice to this conversation 🫂
We live in a world that is rapidly moving towards what is most comfortable and convenient for people. It's not every day you find someone who is prepared to take on challenges in life for the sake of what they feel is right. You're piece moved me, and may have changed my perspective on some things. Thank you for sharing.
Seb, thank you for reading with such an open mind.
If this piece encouraged even a small shift in perspective, then I'm grateful.
These conversations can be difficult, but I think they're important because they challenge us to examine the assumptions we've inherited about disability and difference.
I had a borderline nuchal translucency (did I get that right?). I declined all further testing. I had waited so long for my baby after years of infertility. He was mine. I was his, and nothing would change that.
Oh my goodness, that hug Theo is giving you is perfection; he's so clearly finding comfort in his momma. ❤️
And I agree with the previous comment; this was an incredibly compassionate piece and I'm grateful to have read it. It's so true that societal infrastructure matters and affects the decisions people feel safe making. Another wonderful piece from you!
Susan, thank you. That photo melts me every time I look at it. And I really thought it was a great image choice!!
And thank you for your kind words 🥹🫂🤍 I truly believe that support systems, representation, and access to community shape so much of how families experience a diagnosis.
I'm grateful for friends like you who engage with these conversations so thoughtfully.
Anna, this was such a compassionate and important read. I appreciated that you held space for both your own experience and the reality that every diagnosis, family, and circumstance is different. The line asking whether what people see is a reflection of the child or a reflection of our failure as a society stopped me in my tracks. Thank you for bringing empathy, honesty, and advocacy into a conversation that so often becomes polarized. This gave me a lot to reflect on.
Thank you so much for this thoughtful comment. I really wanted to make space for the complexity of the conversation while also asking bigger questions about the systems surrounding it.
I'm glad that line resonated with you because it was one that stayed with me long after I wrote it.
Thank you for always reading with such care and generosity 🤍
Anna, thank you for writing this with such care and nuance. What stood out to me most was your reminder that the conversation should not begin and end with a family’s decision, but with the systems that shape how that decision is made. Your reflection on receiving a diagnosis, sitting with fear, and eventually finding community was incredibly powerful. This piece challenged me to think more deeply about how we present disability, support families, and define what makes a life valuable. Thank you for sharing such a thoughtful perspective.
This moved me deeply. So often, families are asked to grieve a future before they’ve even had the chance to meet the child in front of them. Thank you for writing with such compassion, and for reminding us that every child is first a human being to be loved, not a prognosis to be feared 🫶✨
Thank you for sharing this extremely valuable perspective for both parents as well as for healthcare providers. Your words will help someone consider compassion next time they deliver a diagnosis- whether prenatal or not.
“Who hands you statistics before they hand you humanity. Who tells you what is missing before they tell you what is possible.” These words highlight the importance of compassionate counseling from the heart of someone who has been there. Thanks for advocating 💛
What a beautiful and important post. When I was pregnant I refused the test for Trisomy 21 because no result would make me not want my baby. And people told me I was crazy. Thank you for sharing your love and your story.
I agree. They wanted to do an amniocentesis on my wife with our second child.. we discussed it and we said no. If a test is not going to change your course of action, why even take it?
BTW … Just bought you a coffee.
Jim, thank you for sharing that 🫂
I know many families wrestle with those same questions when testing is offered. I think every family approaches it differently, but those conversations can be incredibly emotional. We said no to our amniocentesis as well.
And thank you so much for the coffee — that was such a thoughtful surprise and means more than you know!! ☕🤍
You’re quite welcome and it’s the least I could do for you for bringing the matter to light and for rational discourse.
Anna, your love for your son shines through every word. “I would choose him a thousand times over, in every version of every life” brought tears to my eyes.
Thank you for sharing your story with such honesty and grace, and for reminding us that every person is more than a diagnosis.
Darlene, thank you so much!! That line came straight from my heart because it's exactly how I feel. I would choose him a thousand times over, again and again! Theo has taught me more about love, resilience, and perspective than I ever thought possible. I'm so grateful this piece resonated with you 🤍
Well said!! I do believe the fault is within the systems. My son was born 23 years ago and I was in the same situation, hearing the same things that parents are hearing today. Have we not learned anything? Why have we not grown as a society? Medical advancements, research and the internet are now at our disposable to know more than 23 years ago. I am so angry that this is still happening.
Debbie, this is exactly what I keep coming back to. Twenty three years later and parents are still hearing many of the same messages.
We have more information, more research, and more opportunities for connection than ever before, yet so many families still leave those appointments feeling hopeless.
Thank you for sharing your experience and for adding your voice to this conversation 🫂
We live in a world that is rapidly moving towards what is most comfortable and convenient for people. It's not every day you find someone who is prepared to take on challenges in life for the sake of what they feel is right. You're piece moved me, and may have changed my perspective on some things. Thank you for sharing.
Seb, thank you for reading with such an open mind.
If this piece encouraged even a small shift in perspective, then I'm grateful.
These conversations can be difficult, but I think they're important because they challenge us to examine the assumptions we've inherited about disability and difference.
I had a borderline nuchal translucency (did I get that right?). I declined all further testing. I had waited so long for my baby after years of infertility. He was mine. I was his, and nothing would change that.
Patty, yes, you got that right!! 🤍
There is something so powerful about what you wrote. "He was mine. I was his."
Thank you for sharing that with me. I know that journey to motherhood was hard fought, and your love for your son shines through every word.
Oh my goodness, that hug Theo is giving you is perfection; he's so clearly finding comfort in his momma. ❤️
And I agree with the previous comment; this was an incredibly compassionate piece and I'm grateful to have read it. It's so true that societal infrastructure matters and affects the decisions people feel safe making. Another wonderful piece from you!
Susan, thank you. That photo melts me every time I look at it. And I really thought it was a great image choice!!
And thank you for your kind words 🥹🫂🤍 I truly believe that support systems, representation, and access to community shape so much of how families experience a diagnosis.
I'm grateful for friends like you who engage with these conversations so thoughtfully.
Anna, this was such a compassionate and important read. I appreciated that you held space for both your own experience and the reality that every diagnosis, family, and circumstance is different. The line asking whether what people see is a reflection of the child or a reflection of our failure as a society stopped me in my tracks. Thank you for bringing empathy, honesty, and advocacy into a conversation that so often becomes polarized. This gave me a lot to reflect on.
Thank you so much for this thoughtful comment. I really wanted to make space for the complexity of the conversation while also asking bigger questions about the systems surrounding it.
I'm glad that line resonated with you because it was one that stayed with me long after I wrote it.
Thank you for always reading with such care and generosity 🤍
I appreciate that you shared this perspective with us. As the mother of a child with Down Syndrome it’s a difficult time right now.
Aoife, thank you for sharing that. I can only imagine how heavy and emotional this moment must feel for many parents in the Down Syndrome community 🫂🤍
I'm grateful you took the time to read and engage with this piece.
Sending love to you and your family, and thank you for continuing to help others see the beauty, joy, and humanity behind a diagnosis.
Anna, thank you for writing this with such care and nuance. What stood out to me most was your reminder that the conversation should not begin and end with a family’s decision, but with the systems that shape how that decision is made. Your reflection on receiving a diagnosis, sitting with fear, and eventually finding community was incredibly powerful. This piece challenged me to think more deeply about how we present disability, support families, and define what makes a life valuable. Thank you for sharing such a thoughtful perspective.
This moved me deeply. So often, families are asked to grieve a future before they’ve even had the chance to meet the child in front of them. Thank you for writing with such compassion, and for reminding us that every child is first a human being to be loved, not a prognosis to be feared 🫶✨
Thank you for sharing this extremely valuable perspective for both parents as well as for healthcare providers. Your words will help someone consider compassion next time they deliver a diagnosis- whether prenatal or not.
“Who hands you statistics before they hand you humanity. Who tells you what is missing before they tell you what is possible.” These words highlight the importance of compassionate counseling from the heart of someone who has been there. Thanks for advocating 💛
What a beautiful and important post. When I was pregnant I refused the test for Trisomy 21 because no result would make me not want my baby. And people told me I was crazy. Thank you for sharing your love and your story.