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

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

A new chapter: The mini comes home

trach baby in home set up

It’s been two months since “the mini” came home. The day she came home was one of the best and scariest days of my life. Two whole months home! It feels like such an accomplishment, which is a weird thing (and probably socially unacceptable) to say about your baby coming home from the hospital, but it’s true. You would think that by the time a third kid comes along you would have this parenting thing down to a science. You would think. Unless of course the third kid is a one pound micro preemie who completely rocks your world and destroys everything you thought you knew about baby care. Well, not everything I guess, diaper changes and spit up seems to be a pretty universal baby skill. But as for the rest of my hard earned mothering credentials, I can pretty much chuck them out the window. The mini came home with … 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