by Band Back Together | Oct 8, 2011 | Anniversary Reactions, Baby Loss, Child Loss, Coping With Baby Loss, Coping With Losing A Child, Grief, Help For Grief And Grieving, Loss, Loved and Lost |
Maybe you will read this and nod along thinking to yourself, “ugh, why do people say stupid stuff” or you have a friend or coworker that needs comforting and you don’t know what to say. Here are some tips on what to say and what NOT to say to bereaved parents.
WHAT NOT TO SAY:
“It’s so much better that it was so early or he was so young, or she didn’t have to suffer.”
No parents should bury their child. No matter HOW old or young they are. It’s just the wrong order of events.
“You’re young and have time to have other children.”
You don’t know how long we’ve been trying to have THIS child. You don’t know that I haven’t had a hysterectomy because of some terrible disease. You don’t know any details that would lead you to think this statement would be true.
“I know how you feel, my dog died last week.”
This was actually said to me at Charlie’s visitation. Kid you not. Enough said.
“Please call me if there’s anything we can do for you.”
This is a really sweet sentiment. But we don’t know what we need right now. I’m sure we need our grass cut, some meals, somebody to babysit our other children, or any number of other things-be creative. But we don’t have any clue what day it is or even how to put one foot in front of another. So we sure as heck don’t know what our to-do list looks like.
“Things happen for a reason.”
This is probably THE most insensitive thing anyone can say. Though this is true, that there is some “order of events” that our lives take and things happen in the order they are supposed to. BUT this is not a comforting statement and one that most people who are grieving a loss of a child, a diagnosis of a severe or chronic illness, a major accident or surgery that is life-changing, find offensive. If you take nothing else from this, DO NOT SAY THIS STATEMENT TO ANYONE. EVER. Thanks.
So, CharliesMom, what CAN I say to someone?
People get really funny around situations they are uncomfortable with. They panic when they don’t know what to say. They freeze and THAT is when stupid stuff is said.
Here are the basic rules:
1. Acknowledging the situation is better than saying nothing.
2. Saying nothing is better than saying something stupid.
3. Giving a hug and saying “I just don’t have the words to tell you how sorry I am” is better than saying nothing OR saying something stupid.
Other ways to offer comfort:
Send a card with a gift card to a local restaurant. It’s not flowers that die and it will get them out of the house which is normally needed.
Call and tell them you are going to be mowing their grass, shoveling their snow, pulling their weeds (or whatever fits) on Saturday.
Remember that food, flowers and help flows in for about two weeks. Then it’s like the rest of the world picks up and moves on quickly without the grieving people. The rest of the world doesn’t remember, or care that they lost their child or their child is sick. About a month later, or two months later, offer to help or to bring a meal or to take the mom out for a pedicure.
Acknowledge the child in the future. I cannot tell you how much I love this one lady. To this day, and it’s been seven years, when she sees my son Henry, she calls him Charlie. Every. Single. Time. She blushes and gets embarrassed until I tell her that it’s flattering to me that she remembers my baby that she actually never met. People like to hear their child’s name. And they like to know you remember and think of them.
Continue reaching out. If you are really close with the bereaved person, call regularly. I know I never returned calls, turned down lunch dates, didn’t want to go to parties but I had friends who were persistent and at a certain point, I was ready. And I said yes. Don’t give up on the person. They are hurting and are scared to have to leave their comfort zone.
JUST BE THERE. And don’t freak out when we start talking about our situation. If it freaks you out, you just need to listen and offer hugs and support. If you are a good friend, it shouldn’t make you uncomfortable, though.
Seven years down the road, the letters you sent, the meals you brought, the ear you lent, the shoulder you offered, the memories you helped us keep will be remembered.
And the insensitive stuff other people said will still sting when you think back on them
by Band Back Together | Dec 7, 2010 | Child Loss, Coping With Losing A Child, Grief, Help For Grief And Grieving, Loss, Sadness, Stress, Sudden Unexplained Death in Childhood, Trauma |
Holidays have not been easy for me for a long time due to family issues between my wife and my parents. That was unpleasant but tolerable. Details of that are completely different story.
Bringing our first and only child into the world helped. I could now find joy in watching him open his gifts on Christmas morning, seeing the same joy in his eyes that I felt as a kid during the holiday season.
We had the same ritual for 4 years – stress over the holidays, money, buying gifts and so on. But it was all worth it to watch Kaden open his gifts and enjoy Christmas.
This year the holidays have gone back to “full suck mode.” You see, our beloved only child of almost 5 years old passed away in January 2010 of unknown causes. Doctors are unable to explain exactly why the life of our child was taken from us so suddenly.
I never thought anything could change your life more than bringing a child into the world. I now know that losing that child changes your life even more. Life continues on around you but somehow you are unable to keep up. The same problems, and struggles you had before are now magnified by the constant pain, sorrow and discomfort in your heart.
Going through our first holiday season without Kaden is really taking its toll on us as well as our entire family. Some people understand why we don’t want to leave the house to visit friends and family and gather for holidays just like we used to, but it seems that some are just flat out offended and hurt that you decide you are not emotionally capable of attending family holiday celebrations.
I hope that some day the pain will weaken enough to allow a somewhat normal lifestyle but for now, we are broken.
by Band Back Together | Dec 6, 2010 | Grief, Happiness, Help For Grief And Grieving, Livng Through A Miscarriage, Loss, Miscarriage, Pain And Pain Disorders, Sadness |
Grief is a very strange journey and process. Some days I find myself in the best mood – happy and cheerful and then without warning can be smacked in the face with sadness and tears. Sometimes it happens without warning and one thing I have learned through these 10 miscarriages is that is okay. It is normal and it is okay.
There are times where a certain trigger will bring out the grief and I have been spending some time identifying those and learning to be okay with the emotions that come up. Television has been a big trigger, so has Twitter and Facebook and mostly a specific time of year or date. Those last ones I can brace for {as much as anyone can} or avoid Twitter or Facebook for some time if I feel like I just don’t want to face it for the moment. My husband will brace me for television or movies that might have some sensitive material in it for me and will be there if it gets to me. Those I can all ‘deal’ with. They make sense and can be avoided.
One trigger I am having some trouble coming to terms with – or figuring out just how to deal with – are triggers that are from within my body – normal body functions.
Miscarriages are painful. PHYSICALLY PAINFUL. Cramping and bleeding can be intense and one of my biggest lingering triggers is normal menstrual cramping and bleeding. Kind of a double hit because women can be more emotional during their period and compound that with an emotional trigger response it can be very difficult. Very.
It can sort of throw me back. It triggers me to re-live those days where i was fighting emotional and physical anguish. It leaves me confused. Confused because I can’t avoid it. I am almost certain that the emotions that play into it make the cramps that much worse which is then a cycle that I just can’t seem to avoid.
It has slowed down a bit now because I am on birth control that stops monthly periods but the cramps still come and go and each time I can be caught off guard and will find myself back there.
It is hard. very hard. I am learning that it is okay to feel it. I am learning to sit in the grief because running away from it will not make it disappear. It will be okay.
{right?}
by Band Back Together | Dec 4, 2010 | Anger, Anxiety, Baby Loss, Coping With Baby Loss, Grief, Guilt, Help For Grief And Grieving, How To Cope With Post-Traumatic Stress Disorder, Livng Through A Miscarriage, Loss, Love, Miscarriage, Post-Traumatic Stress Disorder, Sadness |
I have never spoken to anyone about this but my husband, my mother, and, of course, my doctors. This may be one of the hardest things I will ever write. It may not all make sense. I don’t remember it all. But yet I remember it like it was yesterday. I will never forget it. This is my PTSD talking. I am in a very bad place right now. And I know what happened to me isn’t as bad as some but to me it’s worse because she was mine.
Anyway, Oh God here goes…
You were due December 25th. I was so excited that both of your sisters were Christmas babies. I love Christmas. And I still do. Your due date was so amazing I couldn’t believe it – three children born on or around Christmas.
The beginning of my pregnancy didn’t seem out of the ordinary. Normal morning all day sickness for me. Around 6 weeks something felt off I called my Doctor who is AMAZING, and she got me right in for an ultrasound. There you were – perfect. And fine. Little heart beating to beat the band with a due date of Dec. 25th. I felt better. Things resumed. We got to our 12th week and we told everyone and even started buying things. Come on – you were my fourth baby. What could go wrong? How could I even think that?? Everything was fine .
Then it happened. July 27th I felt yucky and my back hurt SO bad. I should have called the doctor. You might be here today. I should have known. But I just thought I worked hard that day. It was hotter than hell. And it was just a back ache. I never ever had back labor. At 2:12 on July 28th, I woke up and thought, “shit, I wet the bed.” I hit my husband and said, “I wet the bed. Go get new sheets.” And then I went to turn the lights on. And it felt really off. It was sticky. I turned the light on and there was blood everywhere. I heard a sound like I had never heard before – it was my screams. I told my husband call the doctor and tell her we’re going to the hospital. Something was very very wrong.
My mom came running in and tried to calm me, but it didn’t help. I remember telling her keep the kids out. I didn’t want them to see the blood. And my back – OMG the pain. All the sudden I felt a pop between my legs and there was a “doll” between my legs – it didn’t seem real. I thought WTF is that about my own baby. I saw your little chest heaving up and down. You were breathing!!!!!!!
I screamed for my husband to stop calling the doctor. We had to leave NOW. She’s here. She’s ALIVE. She’s breathing.
You were 18 weeks and 5 days. You were perfect – tiny and waxy, but perfect. You breathed for 5 minutes. I held you in my hand as you took you first and last breaths. I will never forget them. I loved you so much in those 5 minutes. You were my daughter, Ariel Grace.
But the horror didn’t come until we got to the hospital. You WEREN’T a baby. You were nothing. You were – I choke on the words now. You were a miscarriage. But I saw you and I held you. You WERE breathing for 5 minutes. I have a cell video of it. But you were going to be discarded as if it was a miscarriage. I flipped out like my husband has never seen me flip out. I screamed and I wailed. I hit a doctor, I think. Not my doctor. She was AMAZING. She held me while I rocked the baby. She stroked my hair. She couldn’t change the policy.
You would never exist to the world. You would get no birth certificate and no death certificate. But to me and your father, siblings and grandparents you were EVERYTHING!
I made my uncle call his friend at a funeral home. He kind of laughed – not in a mean way but he told my uncle, “She’s not even as big as a cat. I can’t charge. I won’t. It’s a freebie.” I have her ashes. Although that was a HELL of a fight. But I think they knew I was a mad woman and I would not leave that hospital without MY baby.
I have her ashes hidden in my room. I left the hospital the next day with nothing. No baby, no belly, no nothing. I was empty and blank and a Zombie for a LONG time. Hell, I still am. I never mentioned it to anyone. Some people asked questions. I think I probably stared at them blankly. But I never answered. My husband or mother would later. I couldn’t talk about it. It’s over a year later and the pain is still unreal. I have nightmares of waking up to the blood every five minutes. I don’t know that they will ever go away. But what is the worst for me is I can’t talk about her to anyone but my husband, mother and therapists.
Am I forgetting her, am I not remembering her, am I cold? I just it hurts so bad. And no one that I personally know can understand that pain. No one I know in real life understands my anger and bitterness of her not being a baby because she was 18 weeks and 5 days and not a viable birth. Isn’t breathing for 5 minutes viable? Had we been at the hospital could we have made it farther my AMAZING doctor thinks that those 5 minutes were pretty darn special. And so do I for a baby with such under developed lungs.
Obviously now everyone knows she was never born and just went away. People have stopped asking questions. And I just can’t talk about it. I feel cold. And I miss her even more now. I don’t know that it will get better. She wasn’t a “real” living baby. But she was mine. I held her. I named her. I talked to her. And on her birthday I buy her a gift. I guess that really does make me crazy. Maybe I’ll stop someday. I don’t know. But I guess tonight on one of my darkest of nights, this needed to come out. Thank you for listening. No one else knows. And it hurt to talk about. A LOT so this was BRAVE. So thank you for reading.
by Band Back Together | Dec 3, 2010 | Grief, Help For Grief And Grieving, HIV/AIDS, Loss, Parent Loss |
I’ve been thinking a lot about my dad lately. He was my hero.
My dad was the kind of guy who can get through Ivy League med school by drawing cartoons in the back of the class, and still somehow graduate in front. He wore a necklace that read, “War is not for children and other living things,” and took my family to Peter, Paul and Mary concerts.
Dad never read me bedtime stories. Instead, when I was four, he began explaining the theory of evolution in nightly increments. Tom Petty was often blasting in the car, and he used to do a weird hand-clapping maneuver that involved taking his hands on and off the steering wheel which I found exhilarating. He was lucky not to have been pulled over, but it made him the coolest person in the world.
Dad took me to Washington for our last trip. We sat in on an NPR recording and toured the White House. I didn’t understand why on Earth he would pack in THAT many museums visits into one trip. Turns out, he wanted to cram in a lifetime’s worth.
Dancing was the same thing. My father loved to dance with us whenever he could. One day, he had my sisters and I wear dresses, and gave us all a long, special dance to our favorite music (three-year old Carrie, and seven-year old me picked blended folk -too embarrassing to mention. Our favorite Hebrew album was included in line-up. Luckily, my youngest sister was still too little to talk.)
I never understood why he danced with us that day until years later, after he was gone, when I finally learned what a wedding was.
I could go on and on about my father, about what a wonderful guy he was, how he told us if he had to do it all over, he would have been an architect instead of a psychiatrist…
I can generally pull off humor in the most dire of situations, but when I write about my father, it’s hard. I’m still angry at the doctor’s mistake that caused him to hemorrhage and receive an HIV-infected blood transfusion two months before they started screening blood for HIV/AIDS. My dad was gentle, funny, and brilliant – a wonderful human being. I’m angry that my grandmother lost her only son, and I’m angry my mother was left alone with three kids. It’s a miracle my mother never contracted AIDS from my father, thus everyone else in my family is healthy. (We think my mother has Delta 32, making her resistant to AIDS.)
Still, this kind of thing is not supposed to happen.
On World AIDS Day, I want to look back, to smile and thank him for the presents he gave ME.
To the baby born on January 14th, 1952 at Beth Israel hospital in Newark, NJ, weighing 7lbs 11oz, and to the 42 year old man who stood at 6’4, thank you, Dad, for teaching me that no one is infallible. For teaching me that, regardless of race or socioeconomic status, we all are equal.
HIV/AIDS was still relatively new back when my father was first diagnosed. There was still enough stigma that, even in his obituary, my mother wrote he died of cancer because she was afraid of what the people in our small town would think if she told the truth.
Thank you, Dad, for teaching me the importance of being real and speaking the truth. Thank you for showing me firsthand that we all deserve a voice, especially those sick or marginalized.
I always told people the truth about my father, regardless of what people might think of me or my family. I lost friends, as did my mother, but I always wanted people to know that AIDS can happen to anyone.
I stopped believe in miracles that February. But I started believing in the ability of words to transform people’s lives.
Thank you, Dad, for having a bigger impact on my life than anything else in my twenty-five years. If I could give you all the presents your heart desires, I would.
That you lived gave me enough to last a lifetime.
by Band Back Together | Dec 3, 2010 | Anger, Anniversary Reactions, Breakups, Coping With Losing A Child, Grief, Help For Grief And Grieving, How To Cope With Post-Traumatic Stress Disorder, Livng Through A Miscarriage, Miscarriage, Post-Traumatic Stress Disorder, Sadness, Spotlight On Baby Loss |
Today is when our baby was due.
Today is when we would’ve met our child and become parents.
It’s hard writing those words, but even harder thinking about what they actually mean. We never knew if our baby was a boy or a girl, though we’re convinced our little one was a tiny princess. We named her, though only we know her name. I try to look at our faces all the time and imagine what she would’ve looked like. There is an emptiness in my heart knowing our family isn’t complete, that there’s someone missing.
I posed a question to people a while ago. I asked if they would consider someone a mother if their child never made it into their arms, and as would you expect, the answers were divided. I’m half in the park that “I am a mother,” and half in the “I’m not” as well. Without having her here in my arms, I feel like I don’t deserve the title of ‘mother,’ but I can’t deny she was here, even if only for a short time.
Her initials are CG, and I wish I could tell you her name, but somehow it doesn’t feel right. I’m tired of her being our secret though, and I want the world to know I should have a daughter here. I’m angry, frustrated, and hurt. I want people to know about her, I want others to miss her, I want others to care.
Today, I should be a mother, holding our little angel, breathing her in and going over all of her little features with the awe only a new mother can have.
Today is a lot harder than I thought it would be.
