3:30 a.m. Tuesday morning. I have Sophie tucked into her booster seat behind me. Butterfly pillow between her head and her brother’s car seat as she leans into it. Sugar-skull covered fluffy blanket over her. She’s still in her Lego movie pajamas and falls right back to sleep once I get the truck moving. I… Continue reading Feeling Squishy
In my last blog I said I didn’t want to be negative. I didn’t want to make a list of things NOT to say to the parents of chronically ill children. And I still don’t. But someone said something to me that has brought this one thing forward. One thing that should NEVER be said… Continue reading Do Not Dictate How I’m Supposed to Feel
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
I have three kids. I love the hell out of each and every one of them and wouldn’t trade a minute with them. But I had NO idea what I was getting into. When you are young and in love you think “I want a child that looks like him.” or “Maybe our children will… Continue reading What Every Person Who Wants a Kid Should Be Told.
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
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
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!
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