The New Year is Actually the Old Year

The New Year is Actually the Old Year

The baby was up all night. All four kids were sick. One of them in particular is worth at least six kids when she’s sick. I won’t mention any names, but she’s two, has blond hair, and handles feeling badly about as graciously as a cat getting their toenails clipped while being held under water. The car wouldn’t start when it was time for church. The dog chewed up at least ten things over night. New Year’s Day was…ummm. Great. Just really. Great. I did chuckle about it, a lot…because of course! Of course the old nasty Devil is going to come right out of the shoot with all sorts of dirty little tricks to immediately ruin our so called “fresh start”, “new page”, whatever you want to call it. As I sit listening to my little man laboriously breathing like a freight train, the oxygen consentrator humming, and sporting … Continue reading

Cake, Kidneys, and Cancer

pediactric cancer story

To try and summarize Jed’s first year of life would exhaust a much more proficient writer than I. Any year that begins with “not expected to survive” and ends with stage three liver cancer is bound to be a tad incredible. This boy doesn’t believe in mediocrity, I’ll give him that much! I’ve been wracking my brain to think how to do justice to the time that began with me writing this letter to Jed before he was born, to where we stand now. And I totally give up. There is just no good way to explain how thousands of rides up the elevator to the eighth floor of a children’s hospital will profoundly change a person. Or how a little boy with impossibly fat cheeks who yells and grins and breaks every medical rule in the book can melt his way into hundreds of hearts. How a year ago, … Continue reading

Perspective is Everything

Day 49, first time I get to hold Jed since the day he was born.

I almost always avoid the topic of my two tubie kids in passing conversations if I can possibly help it. (Official definition of a tubie: kids with feeding tubes. In this blog this term shall herafter refer to kids with feeding tubes, trachs, ET tubes, IVs, dialysis catheters, or any other type of tube that I don’t know about yet.) Sometimes the topic just comes up naturally. Sometimes it’s purely out of my control, like when someone (usually a cashier or some such person) makes the innocent mistake of calling my four year old the baby sister. Which typically then results in an indignant five minute monologue from the offended little lady of just why she is not the baby sister. That usually leaves me to sputter a hasty explanation to the now embarrassed individual, or just smile blandly as I make my exit and leave them to wonder whatever they like. … Continue reading

Happy Sweet 16 (days that is), and 16 random thoughts to celebrate

Happy Sweet 16 (days) to Jed

Baby Jed is 16 days old. After all the lead up, all the doctors appointments, all the trepidation, I can’t say I wasn’t relieved to finally see his little face in person. And here we are on day sixteen for my little man who was never supposed to make it this far.  The day that Jed was born went as wrong as wrong could get. We had a plan. All the “ologists” had talked. We had a date. I knew where I was supposed to be, and who was supposed to be there, and what what supposed to happen. Except that crazy kid did his own thing and came at the wrong time in the wrong hospital in the wrong way without the right people having time to know he was coming. And oddly? It all worked out just about perfect. Which is exactly how you know God was looking … Continue reading

To my unborn baby (with a potentially fatal diagnosis)

A Letter to my Unborn Son

Dear baby Jed, First off, I should begin by explaining that your full name is Jedidiah, we just call you “Jed” for short. It’s a great name, well for one, because that was the wisest man who ever lived, so it gives you something to live up to. But really, I just always thought it perfect for a little boy with freckles on his nose running barefoot through the back yard swinging a stick pretending to be a pirate. It sounds like lincoln log towers, fishing rods, toy trucks, grass stained jeans, dirty feet, tousled hair and t-ball practice. You should know, I love your name. Here’s something else you should know. You are the youngest of my four children. You have three big sisters. The first one is pretty bossy, but she’s your best bet if you need help tying your shoe or need some sympathy. She will mother you half … Continue reading