Love is in the Worms

Love is in the worms

It was, by far, the longest August day ever recorded, the day our Christina rolled off to the operating room to get her tracheotomy tube and feeding tube placed. I had been dreading it for weeks, the weather was dismal, the plastic vinyl chairs were hard and squeaky, and the surgery more or less took several eternities. Or so it seemed. When the surgery team wheeled her back into her room, there was the usual post procedure hive of activity. People darting here and there, reconnecting monitors, getting vitals, passing off information to each other, someone’s face in front of mine telling me how great the whole show had gone. I’m sure we said the usual appropriate things. My first glimpse over someone’s shoulder of my newly improved child did not leave me feeling charmed. I was in fact, thoroughly and completely horrified to put it bluntly. Of course I … Continue reading

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

Sing a song about Christmas all year long

let my life's song sing to God

Red shirts glittered and hair bows sparkled on bright eyed little girls. Short little men in plaid shirts and bright sweaters wiggled impatiently on the stairs of the church auditorium. The music swelled and one solitary sweet voice sang, “Happy birthday, Jesus, I’m so glad it’s Christmas, all the tinsel and lights, and the presents are nice, but the real gift is You.” The elderly lady sitting next to me reached over and patted my knee. With eyes shining with pride she whispered excitedly, “That’s my great grandson singing!” She didn’t know me, I didn’t know her, but what did that matter? We smiled at each other, and settled back to listen to the childlike voice settling gently over the crowd. I couldn’t help it, but her simple, spontaneous gesture of delight in someone she loved brought a deep pang to my heart. In one brief second I saw myself, … Continue reading

In Everything Give Thanks…the Value of “In”

In everything give thanks

It’s the month of November which means “thanks” is all the fashion until we move on to more pressing matters of black Friday sales and Christmas wish lists. I was thinking what I wanted to say about thanks the other night while doing an arobic activity we do daily around here called, changing trach ties. My daughter has a trach (tube in her throat to help her breath) and it is held in place by a tight velcro strap around her neck. This strap has to be changed daily and the skin washed to prevent skin break down and infections. Simple enough. Except that she’s two, and two year olds all seem have a basic need be terrifyingly unmanageable at the most inopportune moments. It’s all four of her extremities thrashing wildly against my very logical suggestions that she hold still. Never mind I’m trying to hold a tube in … Continue reading

LET GO Instead of Give Up

Let go or give up

The two babies of this house have polar opposite ways of starting off the day. Christina wakes up like a small angry tornado. After about 30 minutes of thrashing around, coughing, yelling, and usually at least one large throw up, she settles down to look at the day like a reasonable human being. It’s safe to say she’s not a morning person. Jed, on the other hand, is more or less delighted to find himself in his bed upon waking up, is thrilled to death to see any human face, and is so full of things to chatter about and smile at that he can barely contain himself. It’s the same morning for both of them. One child is going to endure it with the greatest protest possible while the other is going to enjoy it thoroughly. I have a choice everyday, no matter what is in that day, to … 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

System Recalculating….

Special needs parenting

He’s home. My rolly polly six month old little guy with kidney failure and the really, really, loud set of lungs is home. This one. The one that should never have survived. I still can’t quite believe it. How did I get so blessed? Honestly though, I’m not really sure what day it is, and I’ve had at least fourteen cups of coffee already so here’s my random thoughts on the new, completely crazy, sorta fun, sorta terrifying new normal we’ve got going on around here. First you need to know that having two tubies around is insane. They’re beeping, trying to pull out tubes, throwing up, setting off alarms, you name it, all at the same time. Except for night time, then they take turns…because parents should not, under any circumstance, be allowed a full nights sleep. Real cute aren’t they. If you have multiple children, you know that … Continue reading

October for the Tubies and 9 ways to beat the blues

Special needs parenting: 9 ways to beat the blues

This month was a big month. The Mini turned eighteen months, as in, a year and a half old. Which is wildly hard to believe, except for when she throws a genuine big girl tantrum, and then it’s totally believable. Her latest accomplishments include rolling to her left side, smiling at people, and grinding her freshly sprouted teeth for hours on end (words cannot express my horror of the sound). She also has discovered my phone, when you touch the screen the lights move, which is almost too much temptation to resist…even for her “please burn all the toys and never make me touch them again” self. Little Jed man turned four months old. He celebrated the month by very nearly coming home, then not coming home and having three surgeries instead. He’s also on a personal mission to demonstrate that pulmonary hypoplasia means absolutely nothing to him, and he will scream the … 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