My Vending Machine is Broken

Trusting God through difficulty

Clink, clank, clunk. One dollar and ten cents earns me a solid two hundred calories worth of almonds at the rest area vending machine on the side of I-95 half way between Jed’s hospital and my home. If I eat them ponderously, one at a time, this enough to keep me awake for the remaining 76 miles to home. Words fail to express the thorough disgust dripping from my stare that reflects back to me in the vending machine glass door as the blue bag of almonds dangle in midair, provokingly refusing to fall. The only thing worse than an uncooperative falling bag of almonds, is the insolence of a machine that plunks the wrong item down into the tray. Dear machine, we had a deal, I put in the money. You give me what I want. You flubbed. Try harder next time. Thanks. My phone dinged, and the text … Continue reading

No Shame in Hope

No Shame in Hope

There is a certain member of this family, who, for the duration of his almost two year old life, clearly has demonstrated a moral objection to predictability or monotony in any way. He was not expected to survive past birth, and he did. He should not have made it through his first year, and he did. He should not have made it through a recent four month stint home on hospice with liver cancer, and he did. I don’t know what choice one has with such a child except to let him have his own way, and try again to do what we know to do to help his little body become healthy(ish).  I am completely grateful for, and deeply admire his tenacity, although I personally feel that he may have used his “youngest of the family rights to be dramatic” a little liberally. Do you suppose it is his … 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

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