An intense, scary and courageous conversation recently began on the NTSAD Facebook page: What will 'the end' look like? Will I survive it? Will I even survive the anticipatory anxiety leading up to it? In these questions, parents are wondering the unthinkable and they are actually putting into words-giving voice to-the unspeakable: How can I live these days and months knowing with every bone in my body that I am going to have to say Good-Bye to my beautiful child and watch them die? And how will I ever go on afterwards?

My daughter Cameron died from infantile Tay-Sachs almost 12 years ago, and even as I now feel more joy than pain at the thought of her, I am chilled to the bone just writing the questions above. I remember these same choking fears as if it were yesterday. I also remember how and why they went away, months before Cameron died, and the rush of air that came back into my life during these last months. I hope that my experience can help other parents who are currently wrestling with such fears.

Cameron's first cousin Hayden, a year older, also had Tay-Sachs (their respective fathers, Charlie and Tim, are identical twins who in a statistically improbable development both married carriers, me and Alison. Of course, none of us knew we were carriers at the time!). Hayden and Cameron were diagnosed with Tay-Sachs within 5 weeks of each other, when Hayden was 18 months and Cameron just 6 months. So we were all on this horrific journey together, but Hayden was a year further along in the progression of the disease. Thankfully, we two families were (and are) incredibly close and we took strength from each other, told distasteful sick children jokes to each other, and thought our way together through some of the major care decisions we had to make for our children. We were lucky in this.

When Hayden was two-and-a-half, he developed another pneumonia. The disease had already taken so much from him and it was apparent to everyone-most especially his parents-that he was at the end of his life. Charlie went down to New York to be with his brother. I stayed in Boston with my older daughter Taylor who we felt should not be on the scene in the days leading up to Hayden's death. When Charlie called me to say that Hayden was in his last day, I hung up the phone unable to breathe. I thought of Hayden's parents-especially Alison- and how incredibly scared they must be. I imagined them with Hayden, knowing they were holding him in their arms for the last hours, and I literally could not find air. I doubled-over into a ball at the magnitude of what they were going through. And in this moment, as I held their fear, I confronted my own ... and felt it begin to fade away.

After Hayden's death, Charlie returned and carefully but thoroughly told me about Hayden's last few days and how it was for Tim and Alison. He assured me that the days had been peaceful, that there was a feeling of grace about the home, and that Hayden's passing itself had been very peaceful and painless. He then described for me what happened afterwards, including taking Hayden's body from the apartment. And with this telling, all of the details, my fear vanished for good. Three weeks later, when Tim and Alison came to visit us in Boston, I watched in awe as they moved and talked and even laughed, and I understood in full that I would not shatter.

I like to think that this was Hayden, Tim and Alison's greatest gift to us: the concrete evidence that the death wasn't scary or painful and that parents are ultimately so brave that they can bear witness to their child's death and then continue to breathe, bathe, love and live afterwards.

Through their example and Charlie's account of Hayden's death, I came to understand that I could do this too. You can too. I promise.

Unfortunately for all of us whose children have been given a fatal diagnosis, we live in a country that doesn't deal well with pending death, most especially the death of a child. With few exceptions, health care providers don't help us anticipate our fears, confront them, or process them. And it is the rare person, professional or otherwise, that initiates the conversation that we all secretly want to-need to-have: What is the end going to look like and will I survive it? The answer in all the instances that I know of is that with proper care from hospice or other palliative doctors, the death is peaceful and painless and you WILL survive it. I promise.

For me, I came to understand that Cameron's spirit was getting bigger and bigger as it prepared to leave a body that couldn't carry it anymore. And then, when it was time, she took her last few breaths, in our arms, and left. Of course, just thinking about this moment, I cry. And I don't think about it very often. But in those last days, supported by nurses and a palliative care doctor, I was fully present with my daughter, absent of fear. She was leading me, and I followed. And then, in the days and months that immediately followed, Charlie and I figured it out. We held our grief, acknowledged our pain, saw a phenomenal grief counselor regularly, did ceremonies to honor Cameron, and felt ourselves return to a new normal where we were changed but more than just OK. Cameron was physically gone-and this absence was often brutal in its stark nature-but she was still there and she filled us up in new ways, ways that we are still discovering nearly 12 years later. This is how it is. I promise.

Bereavement is a treacherous business but I have seen first hand how time, talk and therapy get us through to where we are truly living in the absence of our child. At a bereavement support group that I co-facilitate, I have watched as parents who have lost children to disease or horrible accidents begin to mend their broken hearts and actually come back to life. And this is my message to anyone who is currently in the grips of fear: You will not break, you will survive, and with time and help, you can even thrive, with your child's spirit at your back spurring you on. I promise.