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
When you have a child you think “I’m going to be cool about this.” “I’m going to not panic over a hangnail.” “I’m going to understand how to treat a simple cold and get over it and move on.” Total joke. That whole adage about now you freak out over everything for the first child… Continue reading Put the Panic Button Down! Back Away from the Panic Button!
Let me preface this post with this: Vivi is fine. My gut says that she’s just teething and in a growth spurt cause she’s eating so much and losing tummy weight and walking now. She has no real symptoms of anything more than normal baby growth stuff. I had a bad PTSD day yesterday that… Continue reading Breakdown of a PTSD Attack for this Chemo Mom
Sophia Tempee was born with Langerhans Cell Histiocytosis ravaging her organs. She was 6 lbs 8 ounces, bouncing, beautiful, pink with no hair and HUGE dark eyes and no one had a clue, but she was sick. From birth, she puked nearly everything up all the time. I doubled up the formula in her bottles… Continue reading Don’t Say “She Looks Fine” to the Parent of a Sick Child.
Dear Pediatricians, First, let me start by thanking you. You have gone into an impossible field that forces you to see children in pain or dying, and yet you come to work every day and provide care and work towards solutions for children. You have to help demanding, angry, and scared parents, even when you… Continue reading Open Letter to Pediatric Physicians
We got a bill in the mail today… which really isn’t that weird, except this one comes in periodically from a physician who will NOT be getting paid for the supposed service for which he is charging us. The bill is for a physician’s visit over 7 years ago. You read that right. SEVEN years. … Continue reading Listen to Your Gut
What if someone you loved had cancer? Would you think the word “remission” would be the end of the terror? That your fears would be gone, right? That it’s okay now, and that your baby or your husband or wife or mom or dad or sibling is going to be fine now, and that you… Continue reading What Remission Looks Like