I’ve been…

I've been here and there and yonder in the last few weeks..... the underlying depression that gripped my soul for much of September broke in the last few days. I wrote about it here, and can't tell you how grateful I am to be out from under the oppressive cloud that wouldn't go away no matter what tactic I used. Sometimes the soul needs to grieve. Ecclesiastes tells us there... read more >>

Dancing in the rain

In the weeks since Ryan’s surgery it has become more real to me than ever that my son may not have a very long life. When he was first diagnosed, I was forced to release the idea that he would be mine forever, or at least my forever, which meant until the day I was to die. Most of us assume, I think, that we will outlive our children. The further along we went in the... read more >>

Summer turns to fall.

It's feeling more and more like fall every day here in the 'Burgh. I absolutely LOVE the crispness in the air and the beautiful, chilly nights. Several weekends ago we took advantage of the sunny weather (it was still hot!) and went apple picking. Being out in nature is so good for the soul. I could've spent more time in the orchard, but with 12 hands picking, our apple... read more >>

A much needed update.

It's been so long since I posted, I almost forgot how to start a new post. True story. I've had very little margin in my days and the little I have, I've used to rest or read. (Zeitoun by Dave Eggers is a great book, btw.) The kids are doing better… they no longer require that I stay in their sight at all times, but they do often crowd around me when I'm performing... read more >>

To Josh Duggar

Leighann Marquiss
When I read the headline this morning that Josh Duggar’s name appeared among the many others in the recent leak of who has been cheating on their spouses through the Ashley Madison adultery website, on top of the news that he molested several of his sisters, my gut reaction was disgust, hate, and distain. I’m pretty sure my lip snarled as I thought of what kind of person... read more >>

All is Well {post Fontan, we are home}

I'm sitting in the waiting room of the orthodontist while Ainsley gets spacers put on her teeth. It's been quite hectic the last two weeks and I apologize for not updating sooner. I'm pecking this out on my phone so thank you and thank you not so much autocorrect. The last update, the team was pulling Ryan's chest tube and we were hoping to be discharged within a few days.... read more >>

Goodbye, Mr. Tube (Ryan’s Fontan Day 32)

They pulled Ryan's chest tube this morning after two days of draining in the high double-digits.  If all goes well, there is a chance we'll be discharged late Monday. I am excited we'll be gone and anxious we'll still be here all at the same time. But first baby steps. We will have an x-ray later this afternoon to see if he's collecting fluid. The risk, of course, is... read more >>

Still in a holding pattern (day 30 post Fontan)

Ryan continues to be completely stable except for his chest tube drainage.  His ascites is under control, if not gone. His electrolytes are back to normal now that he's off so many diuretics, and his vitals have been stable for weeks. We really are just waiting on the dang tube to come out. He put out 120 ccs for the second day in a row. We had a week of 200ish ccs... read more >>

Ryan’s Fontan post-op day 27

Ryan and Ainsley putting together legos on Saturday We are in day 27 of Ryan’s post-Fontan hospital stay and we’re tired. Tired of not sleeping through the night, tired of being away from our family, tired of the hospital, and Ryan’s tired of being uncomfortable. Overall our spirits are high, but I can see cracks forming at the foundation... his crying every time... read more >>

Ryan’s Fontan – 3 weeks post-op

Day 23- Ryan has had steady waves of nausea throughout last night and today. Ascites can cause nausea so we are thinking it may be that Or an effect of the numerous oral medications he's taken. Ryan is truly my hero as he sips down the various concoctions the pharmacy brews on his behalf up to four times per day. We were visited by a magician who was able to bring a... read more >>