Home

     We are home. 

    I thought those words would bring so much more relief than they have. Now, please don't get me wrong, I am beyond grateful to be home and that Leo is recovering well. That's true. AND. I have a lot of anxiety about being home and caring for my child who has spastic quadriplegic cerebral palsy recovering from spinal fusion surgery in a cervical collar with an incision on the back of his neck. Brad has significantly less anxiety than me, but still some. It's not been easy for either of us. Before I get into all of it, I'd like to state that I'm not trying to complain. While I am definitely struggling with some self-pity at times (for sure), I'm not trying to complain here. I'm trying to put words to what I'm feeling. 

    There's other feelings mixed in with being home, too. We lost a baby on January 13th, 2026. I was 15 weeks pregnant. My body is postpartum right now. And my hormones are thoroughly out of sync, not in normal quantities. And coming home, Brad and I are both feeling like we actually have space to breathe. Emotions from the past 10 days--but also month--are finally actually hitting us. 

    So we came home Monday night. We've had three nights at home. They've gone really well. Leo's pain seems pretty well managed. We are spacing out some of his pain meds to help wean him off. He hasn't seemed to need them as much. So the spacing out the doses is going well. His incision looks good and we are getting better with the spinal collar every time we change it. Leo has been happy and sleeping well at night. He's been eating and pooping well, too. So, there's some facts. 

    Here's some feelings. I am scared that I will put his collar on wrong or that it will wiggle out of place. I'm scared of agitating his incision sight and putting too much pressure on it by how I hold him. I'm scared of putting too much pressure on his head from the collar and how I'm holding him. I'm scared of laying him down and maybe his head is leaning too much. What if the collar isn't holding up well? What about the supplies that we need? What if something happens? Every time he is fussy I'm afraid it's something catastrophic.

    Life feels so fragile. All of this happened so quickly and I couldn't stop any of it. And now I'm caring for a child through very big things. And it's not up to me to stop more big things from happening. But the care is also heavy. The "what if it goes wrong?" isn't completely out of the realm of possibilities. I feel like I'm going to another level of letting go of control, and it doesn't feel fair. I already have had to let go of so much of what I expected and hoped for my kid. I shouldn't have to let go of this much. In a way, I feel like I have to protect Leo from his own body. Because the way his body moves naturally is the way his neck should not move right now in order to protect healing and fusion. 

    And I must remind myself again and again: I am not the only person who can care for Leo. God's got him. I can't stop bad things from happening, and something bad is not happening right now. We are caring for him well. It's just been heavy. And like I said, Brad isn't experiencing the extent of my fears but he has his own fears. He's feeling really big feelings about taking care of his own kids. The lack of control is hitting him. We are very easily overwhelmed these days. 

    We've been working together pretty well through all of this, and that is a sweet gift. Patience, compassion, and grace can get harder when you are depleted. But God has protected us from constant bickering, though we've had our spats. Brad is working to balance his own recovery, caring for Leo and myself, getting work done, and personal or life responsibilities. It's a lot to balance. I'm pretty much just focused on Leo's day and then taking care of myself. 

    Leo is currently one 3 pain meds which rotate at differing intervals. He's also got the rest of his normal medicine as well as food. Working all of that together is hard. I have yet to handle a normal Leo puke while he is in the spinal collar. I'm not looking forward to it, but know that he can be ok. It's just a lot to think about. 

    We continue to have incredible support. To anybody who has given us food or gift cards or company, THANK YOU. I feel like I don't need to stress about the daily living things like food and what it's costing us (if we eat out) because you have given generously. It frees up our mental space and it's such a gift. We are also starting to truly understand that this was a life-saving procedure for Leo. Had this injury gone unknown it probably would have killed Leo or at the very least severely injured him. I'm starting to feel grateful instead of just mad. 

    God is still good. He can take my anger (and yours, too). His character isn't based on a series of events. I don't know why he lets things like this happen. It's really scary to realize how much we don't control. And he does control things, and this still happened...I'm still talking to him about it. I've been coming to him with boxing gloves and I don't know how fall into his arms for comfort right now. But I know he's there. I know he loves me still. I just have to let myself sit in it. And that's hard right now.