Late night thoughts

     God, thank you for taking care of Leo today. He is yours and you love him more than I do, which is hard for me to comprehend. You love me, too. You don't enjoy seeing me hurt. You don't enjoy seeing your children suffer. You hurt with me. You ache for me. Please help me come to you for comfort. God, I'm angry at you and I don't know how to come to you and rest. Thank you for hearing my prayers. Thank you that Leo's well being does not rest on my shoulders. Please give me strength for tonight and tomorrow. 

        Truthfully, it's been a hard week. I'm definitely pushed past my capacity in all of this. I'm carrying several mental bricks. One, I want to protect his neck. I want to make sure the collar is doing what it needs to and help him not move his neck in ways that are not conducive to healing. Two, his muscle dystonia and tone have really increased since the surgery and I am trying to help him learn to quiet his body again. And the muscle movements interact with the caring for the neck thing. Three, Leo's incision is still closing and requires care. Four, feeding him is an art. I want to do what I can to help him not puke. I do things like feed him slower and hold him up after eating I also want him to not be losing weight. Also, when he pukes while wearing the spinal collar it's quite clunky. Five, his digestion and pooping usually take some extra care. And if he's not pooping well, he pukes more. Giving him soaked chia seeds and having time in the stander, those are things that help him poop. Time in the stander is hard right now. Chia seeds can be difficult to give when he gets 12 syringes of food a day and you have to add another of chia seeds. But you don't want to give it at a time too close to food because then he is more likely to puke with a much fuller belly. 

I think those are the main bricks that I carry each day.

    Truth is: it's not up to me to heal Leo's neck. I am doing the best I can. God's got him. I can rest in that. I am learning to rest in that. I know that I don't need to be carrying all of these bricks. They are my natural responses to a very stressful situation. I am learning to set them down. I don't usually set all of them down at the same time, and the ones I do set down are not for very long. But I'm learning. And I'm practicing. 

    Another thing I feel like I'm processing these days is safety. The world really doesn't feel as safe to me as it used to. And that might sound dramatic, but that's the feeling. My son had a life-threatening injury to his spinal cord that we found by chance (It was God, but humanly speaking by chance). It also was found very spontaneously. It was completely unexpected. I have felt so completely and utterly helpless. It's just a lot to process how serious this was and that we knew nothing about it. I just feel like I could lose Leo sometimes. But I think more than that, it's that I feel like something bad could happen in the next second. It's scary. I feel so painfully aware of the fact that really painful things can hit you out of nowhere and that's a really strange reality to live in. Like, when you understand that from experience. Man, it's a monster. 

    I've realized very recently how much the fear of losing Leo plays into my day to day anxiety. Losing two babies in the last 7 months plays into that, too. Life feels so freakin' fragile. I wanna get back to my days of having personal goals, embracing the day for the good and the bad, being outside, getting stuff done around the house, going on a date with my husband, working hard to embrace life. I'm not there right now. I'm surviving a bit. And I'm trying to learn what it means to pursue healing. 

    I'd also like to say that I'm mad at God. I want him to be more in the forefront of this than he is. I mean, just because I feel mad and am not praying as much doens't mean that he's any less present. That's not it. But I want to want to pursue him, to talk to him, to look for him, to process with him. It feels hard right now. It feels hard to pray. I don't feel like God is a big comfort to me. I feel like he's all powerful so that means he could have stopped these bad things from happening to me. I don't understand. I'm having a hard time setting down my anger. I know that he's good. I know that he's there. I know that. I'm working on softening my heart toward God. Anger is a hard one to work through. 

So there's thoughts from me late at night. I'd just like to say clearly that Brad and I both parent and care for Leo. I don't mean to make it sound like I am the only one who cares for Leo. That's not true AT ALL. We are very much a team. In this post I'm simply talking about my feelings and my experience. Brad has his own anxieties. You can ask him about them if you want to hear them. I'm just trying to voice the emotions in my own head.