To email me: suzannexs@yahoo.com
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Latest Featured Comments
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- Rick says, Unfortunately, I think in order to gain big money (contributions) you have to spend big money ($500k salaries).
- Katrina says, I greatly appreciate and completely understand because I lost my beautiful 12 year old son Terry to a horrible monster brain tumor …
- Julie says, If her ‘gift’ had been a cancer diagnosis of one of her two young daughters, would she don her little black dress and heels and gush the same wonderment and awe of her good fortune?
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CONTENTS
Latest Posts:
- I Never Wanted You to Label My Late Child a ‘Hero’ (Published on Huffington Post and Mothering)
- ‘Fault in Our Stars’ Doctor Critic Does Kids with Cancer a Disservice (Published on KevinMD)
- A Race Against Time (Published on Modern Loss)
- The First Time I Laughed After the Death of My Daughter (Published on Mothering)
- The Grieving Parent and the Pressure to be Positive
- Finding My Tribe: A Place for Bereaved Parents to Belong (Published on Mothering)
Before the Storm:
- Flashback: What I Saw in the Hospital Elevator
- My daughter’s diagnosis. An Uneasy Alliance (Published in the Washington Post)
- Welcome to Pediatric Cancerland: How it Feels for the First 24 Hours
- Post-Traumatic Stress in Parents of Kids With Cancer (Published in the San Francisco Chronicle)
- Brain tumor recurrence. The Beast is Back (Published in the Pediatric Brain Tumor Foundation’s newsletter)
- You Know You’re a Cancer Parent Pro When … (Published on the Huffington Post)
- Cancer Etiquette: Dealing With Blundering Well-Wishers
- Desperate Measures: Buying Pot for my 11-Year-Old (Published on the Huffington Post)
- What I Wish I’d Said to My Child’s Doctor (Published on KevinMD and Cancer Knowledge Network)
- The Puzzling Partnership of Cancer Parent and Social Worker
- High ‘Scanxiety’: Portrait of a Brain Tumor Parent on the Brink
- Descent
- The Last ‘I Love You’ (Published on the Huffington Post and iVillage Australia)
- My Daughter’s Disease — Via E-mail:
- Speech at Natasha’s memorial. The Essence of Natasha
Immediate Loss:
- The Sting of Bereavement Cards
- What Not to Say to Bereaved Parents PLEASE! (Published on the Huffington Post)
- Handling casual conversation in the grip of grief. How Are You?
- Should we talk with terminal children about death? Finding Natasha’s Last Letter to her Sister
- 6 Mistakes People Make When a Friend’s Child Dies (Published on the Huffington Post and Mothering)
- Return to ‘normality.’ Sunday at the Mall — Minus 1
- In Natasha’s Room …
- Why this mom is a little miffed with St. Jude hospital. Hey Jude, Don’t Forget the Other Heroes
- Living With the Loss of a Child: Update at 14 Weeks
- A Race Against Time (Published on Modern Loss)
Living with Grief:
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- Reflections of a Bereaved Cancer Mom: Regrets and Gratitude
- Brain Tumor as a ‘Gift’? That’s Codswallop
- Message in a Lunchbox (Published on the Huffington Post and Brain, Child: The Magazine for Thinking Mothers)
- Why this Skeptic is Contemplating a Psychic Connection, Part I
- Reflections from a Meeting with a Psychic, Part II
- An 8-year-old Mourns a Much-Loved Sister (Published on Mothering)
- A 13th Birthday Without the Birthday Girl
- Those Bolshie Bereaved Parents: Should We Shut Up and be Grateful?
- Do Bereaved Parents Have Post-Traumatic Stress Disorder?
- Update 6 Months After Loss of Child: ‘You Will Always Know her Name’
- The Heartbreak of ‘How Are The Kids?‘
- The Grieving Parent as the Abstinent Alcoholic
- Why This Bereaved Mom Can’t Bear Back-to-School Season: (Published on the Huffington Post)
- Does my Other Daughter Have a Brain Tumor, Too?
- 8 Months After Losing my Child: 5 Things That Help; 4 That Don’t
- Should parents share their grief with a surviving sibling? The Day that Lady Gaga Made me Cry
- A Bereaved Parent’s Plea: ‘I Wish You’d Say …’ (Published on Mothering)
- ‘Tis the Season for Grieving
- What Bereaved Parents Want From You
- Searching for Other Bereaved Parents: Why Aren’t Hospitals Helping?
- Grief Crashes a Thanksgiving Getaway
Grief and Reflections After the First Year:
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- A Bereaved Mom Braces for Christmas
- 6 Surprising Realizations a Year after the Death of my Daughter (Published on the Huffington Post and Mothering)
- Treasured: Remnants of My Late Daughter’s Life (Published on Mothering)
- A Bereaved Parent’s (tongue-in-cheek) Guide to Job Postings
- A Grieving Sibling Gets a Message From her Sister (Published on Mothering)
- Dreams of a Bereaved Mother
- Finding My Tribe: A Place for Bereaved Parents to Belong (Published on Mothering)
- The Grieving Parent and the Pressure to be Positive
- The First Time I Laughed After the Death of My Daughter (Published on Mothering)
- I Never Wanted You to Label My Late Child a ‘Hero’ (Published on Huffington Post and Mothering)
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News Stories:
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- ‘Fault in Our Stars’ Doctor Critic Does Kids with Cancer a Disservice (Published on KevinMD)
- Should Doctors Tell Cancer Parents to Quit Chasing Quackery? (Published on KevinMD and the Huffington Post)
- Yes, You SHOULD Question Community Fundraisers for Kids With Cancer
- Aaron Eckhart, Getting into Character Shouldn’t Mean Betraying Bereaved Parents
- What Hospitals Should Learn From Tragic Jahi(Published in the San Francisco Chronicle) and The Tragic Case of Jahi McMath: Why Children’s Hospitals Should Stop Marketing Miracles (Published on the Huffington Post)
- The Tragic Tale of Another Natasha: How did 13 Docs Miss a Teen’s Fatal Tumor? (Published on the Huffington Post)
- Will New CEO of Famed Kids Cancer Nonprofit Get a $1 Million Salary, Too?
- The Dying Tradition of the Doctor’s Condolence Letter: ‘Even the Vet Sent a Card When the Dog Died’
- C’mon Hollywood Moms, Stand up for Kids with Cancer!
- Renegade Neurosurgeons: Patient Champions or Charlatans?
- Childhood Cancer Awareness Month: Hall of Fame, Hall of Shame (Published on the Huffington Post)
- Kids With Cancer: 8 Brutal Truths to Choke on (Published on the Huffington Post)
- ‘Pet Project’ Offers Hope to Patients with Brain Tumor(Published in the San Francisco Chronicle)
- Hold off on the Halo for Angelina Jolie, Please!
- Shocking Pink: A Bereaved Brain Tumor Parent’s Perspective on Breast Cancer ‘Overawareness’ Similar version posted here on the Huffington Post
- Why the War Against Childhood Cancer is Far From Over (Published in the San Francisco Chronicle)
- Oh, No, Sheryl Crow, Not Cell Phones Again
- Kids With Cancer — Where’s the Outcry?
- ‘Rhoda’ vs. Ted Kennedy: Speaking up (or not) for Brain Cancer
- Would you Support a Children’s Cancer Nonprofit that Pays its CEO Half a Million?
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I am so happy to read this. This is the kind of manual that needs to
be given and not the random misinformation that’s at the other blogs. Appreciate your sharing this best doc.
Thank you!
Thank you for sharing such real & raw emotions & stories….
I wandered into your blog after seeing your discussion of using THC for Natasha on the Huffington Post. I just want to thank you for sharing your family’s story. Your daughters are beautiful and the way you write is very moving. Including pictures of Natasha at various stages in her life was lovely. Just wanted you to know that you reached someone today (I’m sure you do everyday) and I appreciate what you said about “overawareness” of some cancers/diseases while things like childhood cancer go underfunded and under-researched. Also, I’m not sure how to say this without saying the wrong thing, but you really made me appreciate my children’s health and not take it for granted. Although I adore them, there are days when I want to sell them to the gypsies (perhaps Natasha was a well-behaved 3-year-old, but mine is not). Your story reminds me not to get too wrapped up in those little things and to appreciate that they are healthy enough to be naughty.
Many thanks t (from the Happy Soul Project!); Cara, I appreciate your observations.
I’m reading your articles as I’m lying here in Rambam hospital in Haifa, Israel next to my precious 11 year old son who is fighting lymphoma. PTSD? For sure! Actually I’m still struggling with PTSD from his and his twin sister ‘sister birth at 25 weeks gestation, and the ensuing 3 years of them bring medically fragile. At least those hospitalizations took place in English! Godspeed and wishing you and your family good wishes, Rebecca
Thanks, Rebecca. Good luck with your son fighting lymphoma.
I’m so sorry. You’re right. There’s no good way to lose your child and I can’t believe that it’s not common sense the five things to not say to a grieving parent! I pray for your peace and comfort when it’s time.
Thanks so much, Naya.
I am deeply sorry for your loss. I love that you named your beautiful daughter “Natasha”. Natasha is such a beautiful and strong name. Thank you for sharing your story so authentically and honestly. I do not have any children as of today. Although, I found your story incredibly helpful. I am sending you love, grace, strength and peace today and everyday forward. You, Natasha and your family are in my thoughts and prayers.
Godspeed,
Brooke Ann
Kind words. Thank you, Brooke Ann.
I am so deeply sorry for your loss and thank you for sharing Natasha’s and your family’s journey with us so eloquently. My one and only girl is a 15 year brain tumor survivor. I try to hide it, but always feel as if something is following us. Your family is courageous, loving and full of grace.
Thank you, Rita. Fifteen years is a remarkable milestone for a brain tumor patient, but I understand what you mean about not knowing peace.
In your life there is clearly a before cancer and after cancer by which you remember everything. For me there is the same divide but I’m not a cancer mom or even a cancer survivor. I’m a early 30 something who believed, up until March of 2012, that I had it all figured out. I had my husband, my kids, my job and although my thirst for reading everything I could get my hands on was very much intact, I was living a selfish life.
I knew about childhood cancer, I knew the names of the monsters that children were fighting. I could rattle of Neuroblastoma, different Leukemia’s, the names and locations of brain tumors etc… Yet it was like knowing how to speak French, neat but not useful in day to day life. Then on a brisk spring day my life changed.
I was shown SuperTy. A journey I was sure would end with him surviving. When he suffered more from the “cure” than the cancer and was sent home on hospice I changed my life; I took a job with a children’s cancer charity. I took my photographic memory and poured myself into statistics, treatments, children, their families and helping. I wrangled donations just for research. I convinced hospitals to let me make goodie bags to help with the parents who were new on this cancer nightmare. I went on TV, pushed magazines to do stories, got into the newspaper, you name it. I did all of this just on donations. I never took a dime for anything but research.
I will always be on the outside looking in when it comes to cancer. I will never know the pain you feel today and will always feel. Your words help me fumble less with what to say to parents facing the worst. Your daughter, your beautiful daughter, is part of why I know that this life is the right life for me. No longer can I be selfish and my husband and children know that things are nice. Big TV’s, shiny cars and the newest gadgetas are fun but making a difference for just one family means more than all the best toys in the world.
Thank you for your writing. I hope one day to make a big enough difference that everyone will know about your daughter and every child with cancer.
Wow! Feeling very humbled and very thankful for your kind and moving words, Annie. The pediatric cancer world is very fortunate to have you on our team. Thank you!
I understand how hard it is to lose a child. My son, Gordon Alexander, died 27 years ago at the age of 1 day short of 5 months. At the time, it was thought that the flu triggered SIDS. There is not a single day that I do not have some fleeting thought of this sweet child. I now have a grandson who is the spitting image of Gordon and another born on Gordon’s birthday–how “freaky” is that?
In the days that followed Gordon’s death, I felt numb. We had two older children–and so many children said to me–“Well, at least you have 2 other children!” As if the life of my son did not matter. (In case you wonder why I am just saying me and my–Gordon’s father was an abusive man who died, thankfully, 15 years ago.)
I understand the anguish you feel and the wanting to validate your daughter’s life–Natasha is a beautiful girl.
And–in a strange turn about–I had a brain tumor last year removed. I was a school teacher and retired due to some residual effects from the surgery…so I know something about that. I will pray for you and your family–your words are so inspirational. Take care and God Bless!
Jbvisconi, Thank you for saying that so much more eloquently than I could: bereaved parents do not get over their loss. Ever. The “at least you have two other children” comment is extremely tactless. I appreciate your prayers!
I am sorry about your own brain tumor and I’m wishing you strength and love in the road ahead.
I found your blog totally randomly, through a link through a link on FB I think. I got to your article about what helps and what doesn’t and I wanted to share one thing..
I’m not a bereaved parent. So feel free to tell me to shove it. I haven’t walked in those shoes.
That said….you mention therapy is essentially off the table for you and you haven’t met a bereaved parent who says it’s helped. I can kind of see that, but I also wanted to comment that in my experience, most people “try” therapy once or twice for whatever it is they are going through….and it doesn’t “work” so they quit. The only time therapy ever “worked” for me was when I committed to it for a length of time (6 months for me). Most of my friends scoff at me and say what you’ve heard…”It didn’t work for me”. But the real story is that they didn’t really give it a shot.
I don’t think losing a child is something “wrong” that needs to be fixed. And I so appreciate your view on it………it’s not an illness. You are going through what a normal parent would go through.
But……..I guess if I were your friend, I might say that therapy might still “help” if only to have an objective, trained shoulder to vent to. So much in my life has been helped by having what outside persepctive. So I wouldn’t entirely rule it out. It can help if you give it the time to do so. If you feel like you could use it.
xo
Definitely not going to tell you to “shove it,” CSpence! I would not rule out therapy and a couple of bereaved parents have told me that they’ve been helped by therapy, especially the PTSD-aspect of grief (the “easier” part of child loss). Personally, I find it more helpful to listen to the experiences of other bereaved parents, but I think we all have to find what is helpful to us.
Re your last paragraph: the challenge for bereaved parents would be finding a grief therapist with experience in child loss — rather than stillbirth/newborn loss (relatively common) or spouse/parent loss (much more common).
Your an amazing example of the strength of the human spirit. Thankyou for being so brave and selfless to share your story.
Kelly, Kind words — not necessarily accurate! — but thank you so much.
Natasha is so beautiful. Found you through your piece in Mothering.
Thank you Megan. I think she is beautiful, too!
❤
Incredible! This blog looks just like my old
one! It’s on a totally different topic but it has pretty much the same page layout and design. Superb choice of colors!
I came across you blog because I needed to read about losing a child as I am my parent’s surviving child. My brother died 3 weeks ago at the age of 45 from cancer (sarcoma). I want to help my parents, but I do not think I can. I am a French Canadian and I translated a poem that describes the pain of a parent, I hope you will like it. I am very sorry about your daughter Natasha. Your blog is helping me.
Please don’t ask me if I will overcome it
I will never will
Please don’t tell me that he as left for a better world
He is not here with me
Please don’t tell me that he is not suffering anymore
I still don’t accept that he had to suffer
Please don’t tell me that you know how I feel
If you never lost a child
Please don’t ask me to be cured
Mourning is not an illness
Please don’t tell me
” at least you had him for xxx number of years”
Tell me at what age you think your child is suppose to die?
Just tell me that you are sorry
That you remember him
Talk of him
Say his name
Please just elect me cry
Sandra
I agree with every sentiment expressed in that poem. Thank you for going to the trouble of translating it, Sandra. I don’t know your parents obviously, but I would think that your presence is very meaningful to them and a great source of relief.At just three weeks post loss they might be a point where they appear to be beyond comfort to every adult in their lives.
Thank you for taking the time to reply. Thank you for your words, it means a lot. I will continue to take care of them the best I can, I will talk of him, say is name and cherish all the memories of my big brother. I will continue to read you.
Sandra
I really enjoy the article post. Cool. dgecedcddecf
My brother suggested I might like this blog. He was entirely right.
This post actually made my day. You cann’t imagine just how much time I had spent for this info!
Thanks!
Thank you so much for being brave and sharing.
Thanks for reading, Po’ Girl!
Hi Suzanne – I just wanted to thank you for all these wonderful articles. I lost my eight year old son suddenly almost six months ago, and it seems that the pain is getting worse instead of better. My son was cognitively disabled. He needed a lot of care and we were in and out of the hospital quite a bit. I miss even those days so much now! Your stories of crying in the car especially sounded like the life I am leading right now. I am terribly sorry for the loss of your beautiful daughter Natasha. Thank you for sharing your story…it truly made me feel less alone tonight. – Regan
Regan, I appreciate your last sentence very much. Reading your message makes me feel less alone, too.
Month six is a challenging part of the grief journey; from what I hear from other bereaved parents, it is not unusual to feel worse at this time. Wishing you the best in the road ahead, and I am so sorry you lost your 8-year-old son.
I have lost two daughters, one of cancer and one to suicide. People say she is not suffering any more, and of my other daughter, she was so brilliant with her music, she just “went home”. None of this helps and no one understands except people who have been through the same thing. Thanks for this blog xx
Christine, Thanks for reading it and I am so sad for your extraordinary loss. “Not suffering anymore” and “she went home” are two of the most common platitudes said by non-bereaved parents. Both are painfully unhelpful and make us feel more alone in our grief. Sometimes a polite one-line response lets the “fixer” know that these comments are not welcome, without causing hurt feelings. Take care.
Oh my goodness Christine, I just read your message here. My only child, my 14 daughter, just recently died a few weeks ago from complications to DKA – I have some major guilt for that. I am so sorry that you lost two daughters. I hope you have been able to find some help dealing with your daughters suicide. I have so much pain and I feel for you.
Richard.
Thanks Suzanne, but I think I need a suicide specific blog or to talk to someone else whose child died of suicide. I think it’s really different. I know in the long run we have all lost our children, but she told me that she was suicidal and had tried before so it’s not as if I didn’t know. I was just hoping that I could finish the job I was doing and that I would go to her after that, and I will of course, regret that decision for the rest of my life. Thanks so much, and love to all. If you know of anything specific to suicide can you let me know? Thanks x
Christine, Have you read this post about an article written in the NYT from a mother whose daughter committed suicide:
I identified with her a lot, although obviously these are very different causes of death. When I wrote that post, the author was meant to be writing a book “Ghost Mother.” I don’t know if it’s out yet.
Did you try the Compassionate Friends? This is more “popular” (ugh! what an inappropriate word) for bereaved parents of children that have committed suicide. It seems to work well for some, poorly for others and ranks somewhere in between for another subset of parents. Worth a try.
Thank you so much for sharing Natasha’s/your story. I wish none of us had to live in a world without our child/children but since we do i am sending you hope and hugs. Thank you again for your words of wisdom and helping me along this journey (that i so wish no parent had to endure). xo
Thank you! Sending you hope and hugs, too!
Thank you for taking such devastation and choosing to share it. In your beautiful Natasha’s name you are touching lives and making ripples for the people who need it most. I am so grateful to have found your blog.
Thank you, Athena.
I just found your blog. I am the mother of two amazing boys. One of them is 20, and one of them would be 9 now, but he drowned in February 2013 two weeks before his 6th birthday. I am brokenhearted. Some days are bearable, some aren’t. Today isn’t, and so I found your blog. Thank you for sharing your pain with other grieving parents. This is the loneliest journey.
Thank you for reading, Lisa.
I’m so very sorry for your loss. I am in my 20s and have no children so I can only imagine your pain. I had been watching a youtuber I follow talk about how he lost his daughter and somehow came across your blog. I’m terrified that this will happen to my child in the future and cannot imagine what you have gone through.
I am studying biology and am graduating this year. I wanted to study biology because I have always been interested in life and genetics. My intention is to become a researcher and study diseases-whether cancer or some other debilitating or lethal ailment. I hope that one day we don’t have to suffer like this. I’ve done research already and the more we learn, the more complicated we realize this disease is but the easier it begins to solve this puzzle. I think there is a huge issue in our environment that contributes to cancer formation-chemicals in our food, water, environment, air…etc since cancer is a genetic mutation (or epigenetic alteration) that causes uncontrolled cell growth and eventually metastasis. I want to fight not only cancer but also the cause of cancer and hope that one day we will bring this disease.
Again I’m truly very sorry for your loss. I cried after reading this and I also appreciate your article about what not to say when a parent loses their child-something I will definitely remember.