Our culture goes crazy in December. The same message is trumpeted inElaborate store fronts, cheerful street scenes, and constant TV ads. Be happy.
Many families will have to make room for grief at the holidays.
Everyone's loss is unique to them. Their journey through pain is the same.
Andrew Kaczynski, his wife Rachel, and their baby daughter, who died on Christmas Eve after a battle with brain cancer, are the subject of this story.
The couple shared a mix of raw, frustrated and hopeful emotions with USA TODAY for two reasons: to spotlight the cancer research fundraising efforts they've undertaken in their daughter's memory, and to give others a window into how it is possible to suffer the unimaginable and live on with joy.
CNN reporter Andrew Kaczynski said that a 9-month-old girl died on Christmas Eve.
Journalists Andrew Kaczynski and Rachel Ensign smile together as they remember their daughter, who died from a rare brain tumor when she was 9 months old.
Kaczynski is a reporter with CNN's investigative unit, KFile. You feel empty and painful when you lose a child to cancer, but raising money has given me purpose. It is like a void you want to forget.
His wife has kept him afloat emotionally. He says that she understands the way he feels because she is the only other person who has lost a loved one. Some days I feel empty like the day she died.
The Wall Street Journal reporter says that conversations the couple have had with other parents who have lost children yield a wide range of stories and outcomes.
She says that everyone's experience is different. Some say the first year is the worst, while others say the second. Some people say you learn to live with the void, while others say it never gets better. Some get divorced, but others like us get even closer as a result.
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The daughter of Andrew Kaczynski and Rachel Ensign vomited uncontrollably. She had brain cancer.
They learned in the fall of 2020 that their first child's illness was serious. Kaczynski says it was like, "Welcome to the worst club in the world."
After walking through Brooklyn's Prospect Park, Francesca vomited uncontrollably. An atypical teratoid rhabdoid tumor was found. Because of its rarity, the drugs available to help Francesca were both few and toxic.
There were six surgeries and an infection.
Side effects from the journey that included seizures, cognitive problems and difficulty walking were promised.
Over the course of three months in the hospital, Francesca had six surgeries, five on her brain and one to put a feeding tube in her stomach. One led to a brain surgery. Her treatments caused pain, vomiting and sores. Her immune system was wiped out, which made her susceptible to infections.
She was 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 800-273-3217 She was on a ventilator and was snoozing in the last month of her life. Her parents held her hand and whispered encouragement.
How to help kids deal with the loss of a loved one during the holidays.
My hero. My child. The strongest person I knew. Andrew Kaczynski wrote about his daughter, who died of a brain tumor on Christmas Eve, on his team's account. I will try not to let you down, I am living everyday for you.
Parents might want to fight in private for their child. Andrew wanted to share his daughter's fight on social media. He posted updates and photos and videos throughout her final months, including a simple statement along with a smiling photo of their "Beans" on Christmas Day 2020, announcing her death.
He wrote that there would be a Bean-sized hole in the hearts of everyone who knew her. We are so thankful to have known her love.
Sharing and fighting to give other babies with ATRT a chance to live was his way of dealing with the situation.
Kaczynski, who recently ran the Boston Marathon to raise money for the Infant Brain Tumor Program at Boston's Dana-Farber Cancer Institute, says that all of the money he has raised for the program keeps his daughter's legacy alive.
"Francesca won't grow up, but she gets to live on through this," he says. Her death will always be a lens through which I view life. I will never be the same.
Andrew kaczynski is with KFILE.
Kaczynski said that was almost with a small measure of pride. His determination to see that other babies get a better shot at survival has saved him from pessimism.
He says that he is now a nicer person because he knows what someone else is going through. I used to be afraid of dying.
Kaczynski lost his voice as he tried to regain his composure.
He says that he can die now thatFrancesca has died. I get to go wherever she went. It is a peaceful thing to think about. I know I will be able to be with Francesca when I die. I don't stress things anymore.
Grief is expressed differently by everyone.
Ensign is awed by her husband. He is the more public face of the couple, and he gave the keynote speech in Washington at CureFest, a gathering of parents who are lobbying lawmakers and drug companies to make childhood cancers a bigger priority.
Andrew Kaczynski has a daughter. He wants to raise money for cancer research in his daughter's name.
She says that doing stuff has been helpful in dealing with the grief. There is no one path for everyone. Some people get involved in the cancer world and others don't want to go back.
They say that the way the outside world interacts with those grappling with loss can be difficult.
One of the strangest parts of the year was dealing with how this changes society. Few know what to say when your child dies. It is not like other losses.
They both agree that everything happens for a reason.
Kaczynski says that is not a good one. There is no explanation for her death. None.
Another person is asking those who are grieving how they are, but has no response beyond that question.
Kaczynski says it means a lot when people check in. When someone answers your question, engage. People stare at me and say nothing. That doesn't help.
You need to be aware of situations that make you uncomfortable.
Rachel smiles as she holds her daughter's body.
She was looking for a new hairdresser after her husband died. She wanted a new hair style, but she didn't want to talk about how her child died with the person who cut her hair. I don't want to deal with that.
One comment that doesn't sit well with those who care deeply is "I can't imagine."
She says it implies that what happened to you is so horrible that she doesn't want to think about it. People want to fix things for you, but it only makes things worse. Say 'I'm thinking of you' if you don't know what to say. It means the world.
Listen to the person as well. They should be there to hold their story.
Don't try to make it better. Let it be what it is.
There is joy in the ruins of tragedy.
Kaczynski says the couple has experienced joy after the death of a loved one. It is not the same. When everything seemed perfect in the first few months of Francesca's life, we can't feel innocent happy.
Kaczynski had not felt peace in a long time, since his daughter was diagnosed with a tumor a year earlier.
He had just finished the Boston Marathon. He was spent. He started to cry when he remembered the feeling that washed over him.
I felt like I had done my job. I felt like if I never raised again, she would say to me, 'Dad, you've done so much for me, you've done me right'.
Rachel and Andrew Kaczynski pose for a picture next to their daughter, who died on Christmas Eve 2020. The parents have used their grief on social media to raise money for cancer research.
The moment in Boston was a breakthrough, an instant when grief was replaced by something simpler to comprehend. It could be just a simple sadness and a gratefulness for what had been.
He says that when he was in the hospital, he couldn't even look at a photo of her from before her illness.
But now? He says that he can look back on her life in a different way. We had a great six months with her. Even though we won't be in that world again, I can now see that and smile.
Their baby's death was a lesson in love and hope.
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Nice Christmas Eve, warm Christmas Day.
