I hate cancer. And I hate autism. I’m very lucky: Despite the exponential rise in autism in America, none of my four children has autism, brain damage, encephalitis, or encephalopathy. But when I got pregnant for the fourth time (yes, it was planned. No, it wasn’t an accident), I couldn’t stop the desperate worry. I had three healthy children. How could I possibly be lucky enough to have a fourth? But I was: our youngest was born healthy, at home, on a Wednesday in November.
I still cry when I think about it. Did I really deserve to have a healthy baby? So many moms I know, like this one, and this one, and this one, do not. So many people I love are struggling so much. I’m furious about it. I’m furious that their daily lives include changing their 11-year-olds’ diapers and trying to stay safe when their child throws a violent tantrum.
No mom should have to be dealing with that. Something is going desperately wrong in America.
I was invited to speak at the AutismOne conference in May 0f 2013. That conference was amazing. Terrifying. Inspiring.
At AutismOne I met some members of a group called the Thinking Moms’ Revolution.
They have children with autism. They started out as 24 friends. Twenty three moms and one dad. They did what their doctors told them. They followed the current American pediatric protocol exactly as the mainstream would have them follow it. With disastrous results. These 24 brave souls, unlike me, do not have healthy children.
They came together to write a book, The Thinking Moms’ Revolution, about their efforts to heal their damaged children, most of whom were suffering from neurological disorders and the effects of autism.
I bought three copies of their book.
The TMRs also started a blog focused on all kinds of children’s health issues.
They are people who make things happen.
They are people who learned the hard way that the system is broken.
They are brave women (and one man) who aren’t afraid to face the trolls. And who aren’t afraid to tell the truth.
Now the TMRs have got their fingers in all kinds of pies related to children’s health and autism. One of the women I met at AutismOne was Melanie Baldwin, a.k.a. Booty Kicker.
Melanie’s son, Luke, is severely affected by autism, and Melanie, whose religious faith means a great deal to her, has written eloquently on the subject of churches and special-needs ministries. Her writings have touched a lot of people and helped many to understand the spiritual needs of families dealing with autism.
But Melanie isn’t just dealing with autism. She had breast cancer a while back and seemed to be doing fine, till a resurgence of cancer was found in her hip last year.
I’m so mad.
I’m so mad I can’t even write this.
I’m mad at autism and I’m mad at cancer and I’m mad that a mama who is trying so hard and giving so much is suffering like this.
I hate cancer
I hate cancer. Cancer stole my friend Amy’s daughter Whitney when she was only 18 years old. Cancer stole my grandmother. Cancer killed our neighbor’s son when he was 18. And also killed our neighbor and friend, who was only 50 years old.
Fuck you, Cancer.
Melanie had surgery last year. And now Melanie’s cancer has come back a third time.
She’s very sick now, and she’s in the hospital away from her husband, Tim, and their son. Their finances have already been ravaged by cancer and autism treatments.
The Thinking Moms’ Revolution set up a site to raise money to help their spiritual sister Melanie and her family defray the costs they are facing. Since I’m a luddite and I didn’t want to pay GiveForward’s fees, I sent Melanie a check for $100.
It wasn’t enough enough. No amount of money is enough. But it’s something.
Updated to add: 3 days after I wrote this post, on October 5, 2014, Melanie Baldwin died of cancer:
Obituary for Melanie Hamilton Baldwin
Melanie Hamilton Baldwin, 43, passed away on October 5, 2014. She is survived by her husband Timothy Baldwin and their son Luke, three brothers, David Hamilton, Tim (Sherry) Hamilton, Mark (Esther), Hamilton. She was preceded in death by her parents Charles and Patricia Hamilton. Mrs. Baldwin was a member of Kirby Woods Baptist Church and attended Longview Heights Baptist Church. The funeral service will be held at 10 a.m., Wednesday, October 8, at Memorial Park Funeral Home with the visitation one hour prior to the service. Interment will be in Memorial Park Funeral Home. Memorials donations may be made to The Thinking Moms’ Revolution.
We need to stop the autism epidemic, get the cancer-causing toxins out of our food and water supplies, and help each other.
Please do something. We can’t help everyone but we can help! Please send a donation to someone like my friend Sean, who is struggling with cancer. Please tell everyone you know that autism is your problem too, whether your kid is on the autism spectrum or not.
Tell your legislators, journalists, and friends that the current state of America’s health is unacceptable.
That we can no longer allow businesses and for-profit medicine to dictate the health of our children.
My four year old—that same one who was born so healthy nearly five years ago—just woke up. Her small blond head is leaning against my left shoulder.
“She needs to go to bed, Mom! It’s after 11 p.m.” Her 15-year-old sister chastises me.
And now I’m sobbing. “I’m not wasting time on the internet,” I cry to my oldest daughter. “I’m not trying to ignore Leone. I just have to get this finished. My friend has cancer and her family needs help.”
“I’m glad you’re helping her, Mom,” my daughter says softly. “Don’t cry. I’ll put the baby back to bed.”
Published: October 2, 2014
Updated: January 9, 2020
Zoey O'Toole says
You may hate cancer, but I love this post! One tiny correction, not ALL the parents in TMR did EVERYTHING the doctors suggested, which could be why my kids DON’T have autism. 😉
Laurie says
We are all in this fight together, I applaud you all. We all wish we knew then what we know now!! Let the past make us better not bitter. We are never given a dream without also being given the power to make it true. I wonder how many of you have found Young Living Essential oils and other products. My website it http://shareyl.com/lauriedawson/ and there is a wonderful group of women that have autistic children and young adults that have had really great results. They are at specialneedsmoms.net…….stay the path, the world needs all of us!!
Trish says
Great blog post. On a side note, I do find the “dog in the fight” reference a little disturbing, probably because I hate dog-fighting and though I love dogs, don’t like the idea of referencing children to dogs. :/
Chris Armatas says
Go Jennifer! Yeah…Fuck cancer & Fuck autism. My 3yr old son is fighting both. Not cool that the cancer brings him so much pain and that the autism wont let him tell us…until his body starts shaking… Not cool.. But, those times when his legs are shot, & he literally drags himself to his train table, then reaches up, & grabs his Thomas train and momentarily looks at us & smiles…those times, he lays the smacketh down on cancer & autism & makes them his bitch! Thank you Phoenix for teaching me the way to be… Please ppl, dont stress….its not worth it, lifes short…smile instead! 😉
miranda says
I hope Phoenix is doing well.