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

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

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

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

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

Lessons on gratitude from a preemie

Lessons on Gratitude from a Preemie

Today my mini girl turns seven months old. I can hardly believe it’s been over a half a year since I first met her tiny little self. In a few weeks she will be coming home. Home!! As in, I can see her anytime I want, home! As in, this really is my kid to keep, home! As in, yes your sister does exist, home! After seven months of daily hospital trips…seven months of starting every day with a phone call to the hospital to see how she did last night…seven months of praying with the big girls for baby sister to “feel better”…seven months of life revolving around the happenings in the tall building on East Cheves Street…it all will change to a whole new normal that is on the one hand excessively exciting, and on the other, completely terrifying. Terrifying because I’m the mom who can barely stomach … Continue reading

God is still good, even when you have problems

Hospital Life Continues

I was feeling good that morning, the sun was shining, I was humming a tune, and my new orange tote bag was just the exact right shade to nod a cheery greeting to the crisp feeling of Fall in the air. We had just got our little mini girl back to our home town hospital from her six week stay at a different hospital an hour and a half away, and I was fairly skipping across the parking lot with happiness to be back “home”. I twirled into the elevator and bounced down the hall looking forward to a few hours of rocking my girl and chatting with the new nurses. One step into the room, one glance at the IV sticking out of the fuzzy little head that hadn’t been there when I left, one glance at the machine with it’s taunting numbers, and my happy feeling slowly drained away and wafted … Continue reading

NICU day 70

nicu day 70 from a parent's perspective

This is the highlight of my day, this is also the dread of my day. This place holds happiness and tears, hopes and fears. I can do this part with my eyes closed. This is the easy part. Park my truck, smile at the door greeters, punch the elevator button for the third floor, walk past the giraffe painting on the left, round the corner to the wash room, scrub my hands and arms with soap that makes my palms itch, grab a clean yellow hospital gown from the cabinet. Sigh. The arms are inside out. Again. I wonder if I’m the only one who finds this annoying. Mash the button outside the windowless double doors labeled Neonatal Intensive Care Unit. It’s a new girl at the desk today, she doesn’t recognize me in the camera. I identify myself. It never feels right, this routine of asking permission to see my baby. The doors … Continue reading

3 Ways to Avoid Spiritual Drift

canoe

Canoeing is right at the tippy top of my list of favorite things to do. Nothing beats sliding through the water on a hot summer day to the tune of splashing paddles and the lap of water. I’ve canoed on lakes, bays and rivers and I can tell you this much. I would heaps rather paddle down a river than up a river. The peaceful outdoor adventure of a leisurely downstream float takes on more of the look of a focused effort not to have a stroke on the return trip upstream. Forget looking at the birds and feeling the breeze, you won’t even feel your arms much less a breeze! Paddling upstream in a stiff current is no joke, and takes a ton of focus and energy. Seasons in life ebb and flow a lot like currents. Sometimes we find ourselves in an upstream situation so absorbed in nothing more than the effort to move forward, … Continue reading