Today marks the 50th anniversary of the death of my beloved two-year-old son Steven, known as Stevie. He died of leukemia on this date in 1966. It was the worst thing that ever happened in my life. Parents are supposed to die before children, not children before parents.
I remember everything about his diagnosis, about the stunned reaction of my husband and me, about his many hospitizations and remissions, and then, his death, at 4 am on December 14.
He was such a beautiful, happy, loving child. I have happy memories of him when he was healthy. Then came the terrible day in May 1966 when we learned why he was having trouble walking. At that time, there was no cure. Most of the drugs he took were experimental. They worked for a few weeks, then he began getting bruises and it was back to the hospital.
It was a hard time for the family, especially his older brother, who was four and could not understand what was happening.
His father, now my ex-husband, established a chair in pediatric hematology at Mount Sinai Hospital in Stevie’s name. When it was formally opened, I spoke to the doctor who holds the chair and asked him about the state of leukemia research today. He told me that most kids now survive–I think he said 80-90%–and that made me happy for them but sad that Stevie lived at the wrong time.
A few months ago, I saw a documentary about cancer on public television. The first episode included a lot of footage about childhood leukemia. It showed the desperate parents, the doomed children, the race to find an effective treatment. If I recall correctly, the first child to survive this scourge developed the cancer in 1964 or 1966. Her drug cocktails worked. She was at the Dana Farber Cancer Center in Boston. Stevie was at the Children’s Blood Center at New York Hospital. His drug cocktails did not work.
I lit a yahrtzeit candle for him. I sometimes wonder what kind of person he would have been. I know he would have been kind, cheerful, happy, and loving. That’s the kind of child he was.

Sending love and virtual hugs to you, Diane.
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Love to you, Diane.
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Sending love to you and your beautiful boy. ❤
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Diane,
May his memory be a blessing.
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Very saddened by your loss of Stevie, all these years later the sorrow lingers, keeps the little boy alive in your heart.
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No words, but a sharing of heartfelt understanding. .
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Thinking of you, Diane.
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Saddened by your loss of your lovely little boy. Blessings for his memory in your heart.
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Heartbreaking. May your son’s memory be a blessing.
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We love you so much Diane!
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Love to you and your family Diane, as well as your beautiful Stevie
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This blog means the world to me, Diane, as I struggle to understand how to fight most effectively the forces determined to kill public education, so crucial to our tattered democracy. My heart goes out to you on this anniversary of your beloved son’s death.
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Thanks for sharing such a personal story, beautifully told!
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How very difficult and sad to lose a child. I am very sorry. Your loss may have been 50 years ago, and time has a way of healing. Yet, the sadness is still there. Sending love.
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Holding you in comfort and much love.
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Sending much love your way and wishes for deep peace in your grief.
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My thoughts are with you.
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My sympathies. I can only imagine.
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During my first year of teaching, one of my Kindergarten students passed away due to leukemia. I still remember how fragile he was but how much he enjoyed being with his classmates and how his love touched us all. Sending blessings to you and Stevie.
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Thank you for sharing “Stevie’s” yarzheit with us. May your son’s memeory be a blessing.
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Diane,
Thank you for sharing Stevie’s brief life and beautiful virtues with us. Your painful loss and picture of Stevie that you drew today should motivate all of us to contribute to research on childhood diseases and to insist that our government officials support more research into the health issues of children across our nation. We will do this.
Bob and Kay
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Such a heart wrenching loss. My heart goes out to you and your family at this time. May you find peace.
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Thank you for sharing. I am sorry for your pain.
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Thank you for sharing about your son. Very touching. My family was fortunate that cancer hit our family much later. In 2001, my brother was diagnosed with ALL at 27. Luckily he responded like children do now. It sidelined his teaching career for a while. Lots of other issues but he is with us. Something for me to be thankful of in these troubling times
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When I was in 7th grade, our small community within the larger city of Chicago lost 2 girls to leukemia. One was in my class. I still remember her and the agony of the family and the community. It’s comforting to know that for children today it is not a death sentence.
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My sincere thoughts and prayers as you remember your sweet son.
Pat
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So sorry for your loss. Losing a child has to be one of the most difficult things to ever face.
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Thank you for sharing about your son.
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“May you be comforted among the mourners of Zion and Israel” That’s usually said on the death of a loved one, but with the loss of a child it must be always a fresh wound.
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Diane, unfortunately I have a deep understanding of your words and emotions. I left education for cancer advocacy almost 19 years ago. If you are interested in adding your voice to cancer issues and want to contact me, you have access to my email address. I believe, now more than ever, that connections and collaboration between education and cancer/disease advocates are more important then ever. We will either succeed or fail together. And the enemy we face will try to pit our constituencies against each other.
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Thank you GregB for what you do. It can’t be easy, but it is so important.
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You take good care. Recognizing this anniversary is really hard and also very important. It means you have never forgotten.
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My heart aches for you. Thank you for trusting us with your pain.
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So sorry for your loss.
My husband’s older brother died young also and there was an unspoken sadness in the family especially as his anniversary of passing approached.
My husband was the youngest and was born years after his brothers death, but the pictures were hard for me to discern which child it was as they shared many physical similarities. I often wondered if that was a blessing to my mother in law in some way.
May the memories of the times shared bring you peace.
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Oh, Diane, I am so sorry. Thank you to you and Stevie’s father for helping find effective treatments for this terrible disease. What a wonderful tribute to your son. I am sending love your way.
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Today holds special meaning in our family’s life too. It is the 41st anniversary of my father’s death and the 18th month of our grandaughter’s fight against leukemia. . Right now she is part of the 80-90%, but as everyone has stated above, our thoughts are with you. Please continue your fight for everything that is right with public education.
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Dear Dr. Ravitch,
I am sincerely and profoundly sorry for your great loss. I receive several of your posts via email, daily and I am grateful for them. Thank you for sharing your precious Stevie with your readers. I feel privileged. God bless.
Stella M. Seilo
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In deepest sympathy! We had a 7 year old boy die with brain cancer in 1976, Dec 5. He had brain surgery, chemical and radiation therapy. Every December we always remember the pain he went through over two years. He was a young artist. I served in the US Navy on an ammunition ship in Vietnam. That was hell. His death and suffering was worse.
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Diane, there are no words.
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This is the time of year when we all feel the loss of loved ones so keenly. I’m very sorry for your loss and am sending prayers of comfort your way.
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Big hug dear friend…you brought me to tears..worst thing that can happen to a parent. Saying kaddosh for Stevie.
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Thank you for the remembrance of Stevie. I’m glad you were able to talk to the Doctor now working in Stevie’s honor. When I read the book “The Emperor of All Maladies” there was so much of that sad story of trying to treat childhood leukemia. And in the latter part of the book has a good bit of the recent success with treating adult leukemias, one of which I have. I am on the side of fortune that allowed me to start taking one of the new drugs just in the nick of time, and it is working for me, so far.
It is clear that your happy kind child still lives in your memory and heart, and no doubt influences your own happiness and kindness, and by this we are all blessed.
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Dr. Ravitch,
I cannot imagine the pain you’re reliving, or even the deep, abiding sorrow and constant ache of losing a child. I am so incredibly sorry for your loss. When my father died, my grandmother told me that no parent should ever lose their child, and although we don’t think about it often, truer words were never spoken.
Thank you for your tireless efforts on behalf of children. While the thought of the lives you’re helping will not take away the extraordinary pain of your loss, I hope it gives you some comfort to know that you are making such a huge difference in the lives of others. I’m sure your son would be infinitely proud of that.
“Through verdurous glooms and winding mossy ways…”
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I am so very sorry for your loss. Thank you for sharing your memories.
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I’m thankful for you and your children, Diane. And I’m very sorry for your pain and loss. I think it’s felt by all. My deepest sympathy is for you.
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Peace, Diane. ❤
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So sad and moving. My sympathy.
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Although I’m crying, thank you for writing about Stevie. Joanne
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I will include you and your son in my prayers, Diane.
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I grieve with you, Diane, for your son and all the children for whom the cure comes too late, as well as for the parents who stand by helplessly.
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How sad I felt to read that your beloved Stevie passed away so early in life. Love and peace be with you on this day.
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That is beautiful! Sorry for your loss. It can never be easy to lose a child – even 50 years later, I can sense your pain. I’m glad you’ve been able to channel your energy into helping others so much!
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My thoughts and prayers are with you. Wishing you peace and the kindness of others on this difficult day.
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💕🤗💕🤗💕🤗💕🤗💕🤗
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I believe Stevie has remained “kind, cheerful, happy, and loving” with HaShem, and you will readily recognize him when you meet again, since you nurtured all that goodness in him, because that’s the kind of parent you are.
Blessings to you and yours, Diane.
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Thank you for sharing with us and also for your valuable writing about important things. I’m sure that Stevie would have been proud of his mother.
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I am sorry for your tragedy, and thank for always sharing so much with us: Your heart and your head. I am so thankful for you. My best in 2017.
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Unfair and nonsensical.
No one’s fault, yet calls into question all belief.
The happy moments were real and endure.
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So sad; I can’t imagine. Thank you for sharing.
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Sending love to you from one mother to another.
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TRULY SORRY. One of life’s cruelest blows.
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Oh Diane, I am so sorry. Much love and big hugs to you.
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Sorry for your loss, my thoughts are with you .
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You and your son are in my thoughts and prayers.
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I am so sorry for your loss. Prayers for you and your family.
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I’m so sorry for your loss, Diane. I can’t imagine the pain of having to bury one’s child. I just now said a prayer for Stevie.
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Much love and hugs to you, Diane. We are only 11 1/2 years away from our worst day. Thank you for sharing Stevie’s story.
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We love you Diane.
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His memory is his legacy. My thoughts are with you.
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Your lifelong work to help children is a great memorial for your son. My deepest condolences to you on this difficult day
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I know you and I aren’t on the greatest of terms right now, Diane, but I am truly sorry for your loss. I know it’s something that one never “gets over” (nor would you want to, really, I think), but you have done amazing things that I think are a tribute to his memory. Thank you for all you do.
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Thank you, Dienne. The election is behind us. We are on the same team.
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Diane,
Please accept my condolences for your great loss. Thank you for sharing with us. We are lighting candles in our hearts for Stevie.
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Dearest Diane,
I am sad that we share this particular bond, yet strengthened to imagine that I too may grow to reach out and help others as you do daily. Aug 31 was the 6th anniversary of our eldest’s death at 23, whose fight against a rare auto-immune disease was compounded by bipolar disorder. It is strangely comforting to realize that holding the knife-like memories of his suffering and hospitalizations is perhaps not a sign of weakness, but a normal part of surviving the loss of one’s child to disease. In this too you are my role model. Blessings and sympathy to you on this sad day, and thank you for sharing the treasured memory of your little boy.
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So very sorry to hear of your child’s passing too, bethree5….feel we are friends from afar.
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Thank you for sharing this tribute to your son. I will try to fill today with acts of kindness and generosity in his honor.
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“The arc of the moral universe is long, but it bends toward justice.” It was unjust to lose Stevie. Past, current and future medical researchers, who “bend the moral universe”, begin/began as children in schools. Your work to preserve the educational opportunities that can and will change our universe, honors your son, as does your fight against injustice.
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May you find peace in the time that you had with your son!
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Thanks, Diane. Here’s an electronic hug to all parents who have lost a child. My wife and I lost a much loved son, Jody, who had cerebral palsy and was blind from birth–a wonderful kid who made friends with people we did not even know, and learned to croon in tune though he never spoke a word.
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Jay,
Blessings on your Jody.
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It is beyond amazing that you trust us with this disclosure. Thank you Diane, for sharing your parenthood pain and loss with us. You are in our heart space in so many ways that even a comment here begin can’t convey.
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Dear Stevie: There are so many strong, loving, courageous people posting here on your Mother’s site. You would enjoy every one of them. Blessings to All.
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Dear Diane,
There can be no doubt that Stevie would have grown into the kind, happy and loving – not to mention smart and dedicated – man you describe had he been given the chance. You, after all, are his mother. May the blessings of the season be with you as you mourn and celebrate his brief but wondrous life.
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My condolences on this sad anniversary. Thank you for sharing your son’s story on your blog.
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I can only imagine your grief. Things are indeed so different today. My husband has had CML leukemia for nine years now and leads an absolutely normal life with the miracle medications that have been developed. In fact, the latest studies show that patients can sometimes now go off the drugs entirely, with no relapse. I’m so sorry your Stevie didn’t live in today’s world, when he might have been cured. My heart hurts for you.
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Thank you for sharing this with us and for everything you do Diane!
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Diane, I send tender love your way, and will keep your family in my heart, especially today. Peace be with you.
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diane – you & stevie are in my thoughts & prayers… thank you for all you do for ALL children!
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Hugs and love to you, Diane.
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My sincere condolences, Diane. Thank you very much for all the work you do for education. I’m sending blessings to you and your loved ones.
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I’m so sorry for your loss. Thank you for all your work and dedication to improving the lives and opportunities for all our children.
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Sincere condolences to you, Diane.
May Stevie rest in eternal peace.
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So very painful. Sorry for your loss……
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Yesterday was the 41st anniversary of my son, Jordan’s, death. He was born with congenital rubella and only lived for 12 hours, but the pain is still palpable. I know how difficult it is to face Dec. 14th every year, Diane, and I’ll keep you in my heart every year from now on, from one mother to another.
Sue Corbiin
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Love to you and love to Stevie.
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I think that only those of us who have had a similar loss can truly understand.
I worked with Hospice for 20 years as a volunteer and I used to tell people
that like any terrible wound there remains a scar that lasts.
That you are working so very hard for children MAY be of some condolence. I truly hope so.
As you know and have stated, the loss of a child is the most tragic event that a parent can ever face.
Your’s was 50 years ago. That may seem like a long time but again, the scars are ever with us.
God bless.
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My heart goes out to you. Life goes on, but is never the same after the loss of a child.
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Oh my goodness.
I did not know.
I am so dad for you.
I cannot imagine anything more wrenching.
My sister’s grandson, the son of my niece, died of spinal meningitis, at age 3. I remember the grief.
My own son, at age 32, was in an accident and his aorta was torn from its mooring in the torso, , and transected and, we almost lost him, so I have some acquaintance with the trauma. He survived and I got to see him turn 48 this year.
But you lost your son’s future, too.
You are a remarkable woman.
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Diane, I’ve never posted before, but your post today about Stevie made me hurt for you and all the parents who have lost a child. Thank you for your courage in all that you do.
Mary
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Nothing worse than losing a child – I’m sorry you had to endure that sorrow. My sister died of leukemia also but as an adult. My heart goes out to you.
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My heart goes out to you today, Diane. To suffer such a loss and then devote your life to the education of children across the country makes it even more clear that you are a woman of remarkable strength and courage. It is an honor and a privilege to know you. Stevie would be proud of his mom.
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Blessings to you, Diane.
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Zich-ro-no li-v ra-cha
His memory is a blessing
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Thank you for sharing your story. I’m very sorry for your loss, Diane.
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Stevie was obviously a wonderful person, just like his mom. My heart is with you.
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From another who lost a child, my very premature little Rebekah, my heart aches for you. Those children are so special. The hurt never really goes away. God bless sweet Stevie.
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It takes a lot of inner strength to share a personal story such as yours, Diane. Thank you. I hope that the painful experiences we have in life, probably the worst is losing a child, help us have more compassion for others and fuel the work we do to bring more justice into the world.
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I’m an Early Childhood professional and, much like you, Nancy, I have been a college professor for the last 20 years. I was inspired by my late mom, who had been a civil rights activist since the 50s and involved her children in the cause for social justice from very early ages. So, for as long as I can remember, I have been on a mission to remedy the human condition. I don’t know if Diane knows it or not, but I did not realize until recently that there is a name for this in our religion, Tikkun Olam, which is Hebrew for “repair the world.”
I learned about the name for this mission after I became homeless and my religious community saved my life. I came to realize, however, that this is something instilled in many of us, from diverse backgrounds, even if we don’t know the biblical roots or the name for it. For example, my doctoral training was at a Catholic Jesuit university and they, too, are all about bringing social justice to the world. And many years ago, it was the Lutherans who helped me to recover from a devastating addiction even though I had no health insurance. So I have learned personally that a commitment to the aims of social justice is ingrained in a lot of us.
A lot of us, but certainly not all. For some, the words “social justice” are a dog whistle eliciting fear and loathing of anyone who is different from them. Somehow, we need to awaken more of those people to Tikkun Olam, including caring about others and valuing the common good. That includes the sorely misguided half of the country who have bet on billionaire oligarchs to save the world, even though they have a historical track record as authoritarian leaders and robber barons, and for whom lack of regulations has served as permission to exploit workers, the disadvantaged and the most vulnerable.
I think it takes both private influences and high profile role models demonstrating this commitment to justice to effect change, such as our families, Diane and you.
Thank you both for all that you have done and continue to do to repair the world. The children of parents like you have a lot to be proud of, including Stevie, Matt, and all of your other kids, blood relatives and not. Love to you from one of your unrelated, grateful, grownup kids.
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Dear Diane,
Sending you hugs and much love and admiration on this sad and poignant day!
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you, and Stevie, are in my heart today…. {{{ hugs }}}
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I am so sorry for the loss of your son, Stevie. I cannot imagine the depth of your loss, despite the passage of time. Time simply adds more questions–school days, learn to ride a bicycle, high school achievements, college and career choices, marriage, family. I carry my grandchildren in my heart, wherever I am. How much more it must be so for a parent whose child has died. Thank you for sharing your loss, your grief, your hope and regrets, and your wonder about the person Stevie would have become. ❤️
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I am so sorry for your loss. As a mother who lost a son at birth 25 years ago, the pain never goes away. I have recently been diagnosed with Leukemia and my doctors are saying with the treatments they have now, I should be fine.
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I am so sorry for your loss–I just returned from a trip & read this post. May his memory be a blessing.
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