September Update

Two weeks ago I set these two photos side by side to show the stark contrast between September 2016 and September 2017. And then I broke down sobbing and never posted.

We are now past the one year anniversary of Job's second major open heart surgery, the Glenn (9/16/16). But the month that followed was, in some ways, the scariest month of Job's life. I tried to go back and reread my posts and look at some of the photos but it was too painful to remember his many life-threatening complications.

Instead sitting next to his bed, weeping and pleading for Job's life, I'm now searching the house for him because in the 30 seconds I took my eyes off of him, he scooted off to make a new mess for me to clean up.

We are so grateful.

Oxygen Update

Job is THRIVING off of oxygen!!

He hasn't had a whiff of oxygen in 19 days! It's been 24 days since he desatted. And 33 days since he was on continuous 24/7 oxygen! I mean, who's counting?

I love not carrying around oxygen tanks (they're heavy!) and I really love not policing him pulling off his cannula. It's just wonderful.

But Job is ECSTATIC to be off his cannula. That's what I love most. These last three weeks, his entire demeanor has just been shining with excitement and wonder. No constraint! He scoots around with such freedom!

He's starting to pull himself up to stand. He's climbing up and down little steps. Basically, he never stops moving. Ever. Or eating. And he's so proud of himself! His pride and wonder and excitement is contagious. (Take, for example, this video of him sliding today: https://youtu.be/JutHyrcCh5k So proud and happy! But I couldn't seem to capture that excitement in this photo of him eating a popsicle tonight.)

We saw cardiology last week and I've been marveling at their pronouncement ever since: Job doesn't go in for another appointment for THREE months. We haven't ever gone so long between appointments! (They were even twice weekly, outpatient, at one point!) Dr. Files said this is the FIRST time in Job's life that he will "mindfully neglect" Job's cardiac care. No list of things to research for the next appointment. No new meds or procedures to try. No immediate concerns.

THIS IS SO AMAZING!!!!

Glimmers of Peace

Try as I might to abandon myself in this joy, I have wept a lot this last week. With the realization that this is the healthiest Job has ever been comes the realization that this is probably the healthiest he ever will be. Sometimes when we get exciting news it's actually just painful because it's not actually good news; just good news in context.

I have to work so hard at keeping my expectations in check because I've pretty much always been disappointed by Job's complications. This has been a hard thing for almost exactly two years, but there has been something especially poignant about the past month.

I don't know if I can explain it because I'm not sure what it is or even how long it will last. I feel a lightness, a joy, an exuberance, that I haven't felt since before we found out we were pregnant with Job. It's a struggle still, but it's one that I'm winning: (right now) I'm just genuinely so happy that Job is so happy.

Tonight I reread my posts from early August. I was so weary. So discouraged. So much has changed so quickly. I'm hopeful again. This month has been a respite. A beautiful mountaintop experience I will get to look back on while we're in the next valley, I hope. I'm finding it easier to catch Job's contagious joy.

I don't necessarily think it's just that Job is off oxygen. It's bigger than that. Something finally clicked into place a bit more the night after we got home from cardiology last week. Seth put the boys to bed while I did some lesson planning and when I came back in the room and saw them all sleeping so peacefully I just completely lost it and cried as I haven't cried in months.

Job is still really, really, really sick. But Seth has always had an easier time than me enjoying each moment of Job's life, instead of thinking ahead to the next bad thing, and as he held me and talked to me that night, I just calmed down. He said the same things he's said before. I just listened? Really, I'm afraid to even type this out because it all sounds silly to me. It might be a fleeting moment. But I want to acknowledge it.