I actually didn't think it'd been as long as it has been. Thought I'd written since we came home. I guess that part never made it out of my brain and onto the paper. Again, sorry.
So when we last left our brave hero, he was hangin' out, partying in the PICU, 'cause you know, he's sure that's the happenin' place to be. And besides, didn't you know? Breathing is for wimps.
|Leaving Primary's on Oct 21|
Anyway, while I don't the final, final numbers from his heart cath, there are some things we do know. We know they're not better. In fact, they're worse. How much worse? I don't know. But worse. We also know that each time he goes under general anesthesia, it's harder for him in recovery. In April, he ended up back at Primary's a few days post-op and we were there for a few more days. This time, he only lasted a few hours on the floor before being transferred urgently to the PICU where he stayed for 48 hours. Then we continued to battle things here at home.
Coming home on Saturday was more a testament to how much equipment and knowledge we had here at home than it was to him being better. All in all, it was pretty much ten days before he was back to baseline, from a "same-day procedure." That in and of itself is very telling.
So unless things change (hope springs eternal, right?) he won't be having any more trips to the OR, not unless it's absolutely necessary to preserve his life. Because facts are, it will threaten his life. We've gotten to the point where it will be difficult for surgical benefits to outweigh the risks.
|Our "Boy Who Lived." |
And FYI: waterproof mascara and a paint
brush work wonders for non-smearing scars!
Sometimes it's hard, really hard, to look at him and know where things are headed. But then I remind myself that we've lived with this uncertainty for over seven years, and he keeps on surprising us, rallying, smiling. William and I were talking the other night, and I realized that if I spend my time mourning now, I'll miss out on some great times. The time for mourning will come, is coming. I don't know how far off it is. I'm still hoping, holding out, for years.
Back in 2013, he and I had a talk, and I told him he had to stick around for at least 13 more years, until Michael gets back from his mission for the Mormon church. And then at that time, we could renegotiate things. The kid rolled his eyes at me. (I'm not kidding, he did!) It's been four years. He's got another nine before we even talk about this again, and I'm going to do my best to hold him to that. But if it doesn't work out, if his time is shorter, I want to remember all the smiles, all the joy, all the laughter I can. And while pain and sorrow do touch it, I don't want that to be the overriding theme.
|Blowing raspberries during a cold soccer game.|
My kids will tell you that for the four months before he was born, Mom cried and researched, researched and cried. I don't want that to be the kind of thing they, or Aaron, remember for this part. So we'll do what we can, when we can. We'll bundle up and make the soccer games, dance competitions, and other things. We'll avoid crowds during flu season as much as possible, but still get out. He'll go to school, learn, play, make friends. We'll cram as much of life and love into whatever time he has.
|Life is Beautiful!|
And yeah, if you continue reading, you might be subjected to some of the darker thoughts. It's how I process. Please don't pity us. Pray for us, but don't pity us. We've got the most wonderful teacher living right in our home, right here. Be glad for us. Being able to have this angel in our home, take care of him, love him, is an incredible blessing. And no matter the pain that will come, I wouldn't trade it for the world.
Our own little miracle, our "boy who lived."