Back to Normal?

     I'm realizing that I haven't written on here since Leo was sick. It's crazy how two colds can complicate post surgery care so much. I remember feeling like when he got better all the post surgery care was going to feel so much more doable because it wasn't happening in the midst of trying to keep food in him, manage snot, and helping him sleep. And that's exactly what happened. As Leo recovered from the colds, life started to feel much more manageable. 

    And then, just as we were feeling settled in to life with a spinal collar, Leo was cleared to be out of the collar on March 23rd! The doctor is very happy with his recovery. Adjusting to Leo out of the collar has come with new anxieties. The first week in particular was really hard, I think. I'm grateful that the neurosurgery team is very accessible to us. I have sent pictures and videos of Leo to ask if anything about his position or movement is concerning. Cause, here's the thing, we are still supposed to be careful. We still don't want a ton of pulling on his neck. I was asking the doctor about certain parameters and he said, "You know, it's really a gray area. You know your kid best." Which is great and trusting, but I was afraid of that answer. I want him to tell me exactly what Leo can and can't do. Spastic quadriplegic cerebral palsy can mean very strong neck movements. And I get scared that with Leo's strength and struggle for neck control something is going to happen to his neck and now the hardware in it. The reality has been if Leo is uncomfortable and moving in very harsh ways or if someone is watching him, we put him in the collar. It's a great tool.

    All of that to say, please pray for continued healing in his neck and for his vertebrae to fuse well. We are going back for an MRI in June. 

    So, yes, it's been a lot of stress as he's out of the collar. But also oh so sweet to be able to see his neck free and his head turn. He's moving so much more than he was pre surgery. We are so thankful for the movement that God gave back to him. It's terrifying to learn that your kid was experiencing paralysis and you didn't know. The spinal cord injury was paralyzing him---and we had no clue. So while it seems like we are on the road back to "normal", Brad and I continue to grapple with a new reality. 

    Leo had a life-threatening injury that we knew nothing about and found by chance (humanly speaking). We are so grateful for Leo's recovery. And his recovery doesn't change the reality that he was injured for well over a year and we couldn't tell. Now, we control actually very little, right? But Brad and I feel so painfully aware of how much we don't control. It hit a new level after this experience. 

    And, to be honest, I feel like I don't deserve this. I feel like I already went to a new level of understanding my lack of control when Leo was born. I wrestled deeply with the expectations, dreams, and hopes that I had for him being ripped away and handed a life I never would have chosen for him. I wouldn't change it for a thing now! But I already faced the deep realities of not being able to protect my kid from pain. So, why do I have to go through another level of it? I'm not proud of those feelings. They are not accurate to reality, though I do think they are very natural in my situation. God meets all of us where we are at. None of us control the outcome of out kids' lives. I don't wish this experience on anyone. I am fighting those voices where I am comparing myself to someone else's life. That's not beneficial. I'm just sad. 

    But the new reality that Brad and I are grappling with is this: that we can care for him to the best of our ability and something can still happen to him. We can do "all the right things" and his health could still go downhill. Ugh. I hate that. It has manifested itself most when Leo is upset or uncomfortable. Our minds can go to catastrophic explanations of his discomfort very quickly. It's hard to tell what's really going on because a bit of paranoia can be present. And it's hard to accept the reality that we can't solve everything and we have to trust God's care for Leo.

    When I write that last sentence, I kind of chuckle. It sounds so simple. But it's not! I can get so nervous about Leo moving his neck a certain way. When we leave him with the night nurse. I have to actively choose to not picture Leo laying in bed and moving and then hurting his neck. Everything in me wants to just plain stop the movement and I can't. I have to take my thoughts to God and pray that he protects Leo, pray that the nurse can care for him well, pray that his neck heals fully. I am not the only person who can care for Leo. And, wow, trusting God's care for him when I'm worried is a big one. 

    This anxiety isn't over us all of the time anymore. I don't mean to paint a dire picture. We are adjusting. However, it'll pop up unexpectedly and sometimes frequently. Part of what I'm doing with it is just trying to turn to gratitude and mindfulness, being grateful for the present, being grateful for the good day and health Leo is having, being grateful for my time with him now. No matter what comes in Leo's future, I know that all of the time with him is a gift. I don't mean to be morbid in my thinking, but I think that's a gift of this surgery, too. I want to be grateful for where we are at without having all of my questions/anxieties/concerns solved. They can truly rest in the hands of our Creator.

    Happy weekend!