We've had a pretty good day, although Matt and I have been very busy with chores. They never seem to end. I "relaxed" tonight cutting elastic out of diapers while Matt gave Jonah his last bottle of the night. He’s just now finally fallen asleep. It's almost midnight... again. Last night he didn't fall asleep until after midnight, but he did sleep until a little after seven, so I'm okay with it. We did have to get up three or four times and give him a little butt pattin', but he went right back to sleep with very little effort.
His breathing has seemed more labored today, which always makes me nervous. We had him scoped when he was a month and a half old, but haven't since. I think I'm going to set up a time with the ENT to have it done again. As much as I hate it and worry about it causing blistering, it's just too big of a risk not to check in on things once in a while. I just don't understand what causes his stridor. Is it just a "floppy airway," and if so, what does that even mean? I mean stridor is the sound produced when pushing air through a narrowed space... right? That doesn't sound good.
I guess I just keep waiting for the bottom to drop out. I mean, he's doing so well - thriving, gaining weight - right now, it's just blisters. And I just feel like I'm living in a perpetual state of waiting for the worst. I don't know that I'm negative (although Matt would probably say that I am), I just think we've experienced too much hurt for it to remain so stable. I can't seem to get my hopes up... as much as I want to. I have told several people that with each new milestone, it's bittersweet. On the one hand I'm happy and excited and thankful for (fill in the blank), but on the other, I try to embed it in my head, you know, just in case. Am I making sense? Like, for Father's Day, when I was signing Matt's card from Jonah, I thought, "What if this is the only Father's Day card Jonah ever gives?" And when he reached up for the first time and touched my face when I was kissing on his belly (I told you I love me some nudey-nudey time), I started crying - partly out of happiness, partly out of sadness that maybe we don't get a lifetime of this. And I kept thinking at the beach, "What if he's not here with us next year?" Isn't that crazy? I wish I could just accept now for now and stop thinking about the what ifs. Because, truth be told, I'm not sure I would survive it. What if, what if, what if. I honestly can't bear the weight of that thought. And especially on a day like today, when his stridor is worse. It just scares me so much. It's not the dressing changes or blisters or draining or cutting elastic out of diapers or clothes modifying or constant bandaging that get to me. It's the fear of the unknown. It's the weight of the What If. Sometimes I feel like I can't stand up under it.
I get scared that my faith won't stand losing another child. And then I beat myself up because he's right here in front of me - smiling, laughing, playing - and although I don't take a moment of it for granted... my mind still goes there. To the unimaginable. "Remember what his voice sounds like, Patrice." "Remember the face he makes when you first walk in the room." "Remember how he laughs at Matt laughing." "Remember how he looks at you with those eyes." "Remember that smile." "Remember how it feels when he touches you." "Remember how he smells." "DON'T FORGET."
Is it intuition or paranoia? Is it substantiated fear or complete craziness? Could I survive if he doesn't? Would I want to?
Do you see how it goes? I hate it. I just want to be here, in this moment, today. Loving Jonah, living, trusting God. I get so scared that as many promises as He's made to me and as much hope as He's given me, He has not guaranteed me that Jonah will have a long, full life. He has promised me that He will be with me every step of the way, no matter what. And in my head, I know it's true. But if I were being completely honest, when I'm overcome by the What If, I wonder if that will be enough.
And I would pray that He would be enough, but it's not even a prayer I'm willing to utter. Because that would mean Jonah is gone. And that's just not an option.