Since my daughter was diagnosed with liver failure and then cancer, I have heard it all. I can give you a long list of things not to say to a parent with a sick or chronically ill child, but that would be exhausting and wouldn’t nearly cover it all. These lists are all over the… Continue reading Five Things the Parents of a Child with a Chronic Illness NEED TO HEAR
When you have a child with a chronic illness, you have to go through the steps of grief emotionally to handle the disease. But once you go through those and get through the initial emergency period, you can get complacent during long stretches of generally good health where the “chronic” doesn’t rear its ugly head. … Continue reading The Steps of Grief with Each Doctor Visit
Most everyone starts off on the “fighting pediatric cancer” journey with loads of friends and family. The second you say the word “cancer,” it’s like you are suddenly the host to the world’s largest love fest. You have friends you didn’t know you had and your family members all stand up and offer to help,… Continue reading Culling the Herd: How Relationships with Friends and Family Change When Your Child has Cancer.
Disclaimer: This is not a preaching moment for me to tell you that you have to or even that you should believe in a God or Goddess or Gods or have any faith at all. I believe in the freedom of religion, whatever that religion might be, and that includes the freedom to NOT have… Continue reading My Faith and My Daughter’s Cancer
I find myself thinking those words more often than not in the last few weeks. I’ve always been the bad@$$ in the herd. The black sheep with the bandana, playing the metal music and not bending to the judgement of others. I didn’t cry for anything, ever. I didn’t cry when I moved away from… Continue reading Please don’t think me weak.
You are a Pediatric Specialist. You work in an office attached to a hospital, and you are an expert in your field. You do amazing things. You know the liver, heart, lungs, bone marrow, and tiny tiny cancer cells better than anyone and you know how good you are. Us parents aren’t trying to discount… Continue reading Tips for Pediatric Specialists: Coping with the Tempermental Relationship You Have with Parents
Last night, I held our youngest daughter against my chest and placed a flannel blanket that her Grammy made for her against her cheek and rubbed, holding the blanket wrapped around her tiny body. She instantly grabbed it with one arm and snuggled her face against it, against my chest, and promptly fell asleep. I… Continue reading Little Hands and Living in the Now
My husband is a man of many colors, a renaissance man with many cloaks and many talents. He is humble and kind and doesn’t think much of himself, which is ridiculous, but I can hardly change him or how he sees himself after 14 years. Much like myself, his soul was marred by our daughter’s… Continue reading Homage to Chemo Dads
I am the mother of a medically fragile child. I have been her mother for 8 years, and for nearly all of those 8 years she has been very sick, recovering, or dealing with the permanent effects of her illness. She was born with Resistant Multisystem Langerhans Cell Histiocytosis, which is a fancy way for… Continue reading Dear Normal Parents, A Letter From a Chemo Mom
When I was in law school, I remember being in torts class and learning about “the eggshell plaintiff.” A plaintiff is a person who sues another person in court for injuries. The Eggshell plaintiff is the person who is injured by something you did, but their injuries are far worse than they would be in… Continue reading The Eggshell Child
Herding Chaos 