My baby is developing normally and is healthy and strong.

As the parent of a 49 year old who was expected to die before five, this brought back many memories and even a bit of wisdom I may have forgotten. Thank you for sharing your gift to describe such experiences. Loneliness can be paramount for all of your family. This helps us to remember we have opportunities to share with those who understand. And this many years later? I admire the progress being made. I realize there is still a long way to go. And I am delighted to see my precious daughter enjoying her life more than she ever has, feeling confident that she can contribute to others in her special ways and tough enough to patiently work her way through medical care, knowing that it is not permanent. She has taught me much I never would have known without her.

My husband snipped, and the midwife whisked the bean-shaped blur away.

You have beautifully articulated what those of us in the disability rights movement have been trying to say for decades. Our lives are not tragedies. They are journeys.


Ingrown Toenail: Worry and guilt about your right to move forward.

Asthma: Smother love. Inability to breathe for one’s self. Feeling stifled. Suppressed crying.

So the affirmation-uttering woman might more honestly say into your ear: It will not be easy, and it will not be comfortable, but it will be, and you will become.


Suffering is a part of life. –Pema Chödrön, When Things Fall Apart

Amazing! No words about your words would adequately capture all that I felt in your story. Thank you for allowing us to breathe in some of your experience.

He would never have been able to straighten my daughter’s back.

I am a bit speechless after reading this, so struggling with what to say. I think this writing is so important and amazing and soulful. I’m a bodyworker … I use mind body techniques with my chronic pain clients. And I’m always frustrated by the Louise Hay/affirmation approach as it misses so much of what is true and important. You capture that so deeply and beautifully here. Thank you!

What a beautiful piece. Stunning.

Hello Heather, Thank you for sharing your story. You speak a lot of good truths. I have studied the theology and benefits of suffering for 30 years, and experienced a share of it myself. There is an excellent book that is out of print now that not many people know about. I think you would benefit from it – it is called, Blessings, by Mary Craig. She is an incredible writer and had two children with disabilities – one severe, the common name was Gargoyle Syndrome, and the other with Downs. They were totally unrelated issues genetically. It is a treasure of a book. God bless you!

This is an amazing and profound story! You are a wonderful writer!

Hello Heather, Thank you for sharing your story. You speak a lot of good truths. I have studied the theology and benefits of suffering for 30 years, and experienced a share of it myself. There is an excellent book that is out of print now that not many people know about. I think you would benefit from it – it is called, Blessings, by Mary Craig. She is an incredible writer and had two children with disabilities – one severe, the common name was Gargoyle Syndrome, and the other with Downs. They were totally unrelated issues genetically. It is a treasure of a book.

Oh, lovely, a fetus-hugger using disabled people as your shield.

I just asked my friend the other day: “Do you remember in the 90s when every illness was your own fault?” I remember seeing Carolyn Myss on PBS discussing this.