A New Understanding

     Leo has a buddy. Leo and Isaiah are different in a lot of ways, but also very similar in special ways. They get things that not many other people get about them. From a mama's perspective, a practical way to explain it is this: Leo and Isaiah are about 6 months apart, non verbal, not mobile, and g tube fed. They get each other. And they are so fun to see hang out. 

    Isaiah's mommy and I were having a coffee date with our boys. During our time, I had a sweet realization of something that I am coming to understand more and more in this stage of life. God is continuing to teach me a lot about Leo's therapy, Leo's body, and engaging with others. 

    I used to freak out every time Leo missed a therapy session. It felt like a big no-no. Brad and I didn't want to be not prioritizing therapy. Making a call between therapy or another activity was hard. It was just hard to prioritize. And I think it felt like any time prioritizing something over therapy was wrong. Therapy sessions also used to be more stressful to me because I was so "aware" of how much I was "failing". I saw the homework from therapy and all of the times that we didn't do it and I felt so bad. I hated having to tell each therapist about all of the times that we didn't work on said skill. What it comes down to was that I was very in my head that if I didn't do therapy enough with Leo than I was going to harm his development.

    Does this make sense? So, if having Leo in his boots for 3 hours a day will help protect the range of motion in his ankle joints, meaning that he can move his ankles better farther into his life, then that would mean that if I didn't get him into his boots for those 3 hrs a day that his ankles would tighten up and become immobile and that was my fault. 

    Does that train of thought make sense?

    Therapy has been stressful! And I want to be clear that the way of thinking that I'm describing, I'm using past tense. I believe that God has brought me out of that in big ways. For the most part, I do not stress about the same things that I used to in regards to therapy. That doesn't mean that I never struggle with these thoughts or anxieties. Just growing.

    All that to say, therapy was always this huge weight to carry. And my kid had/has 5-7 therapy sessions a week! So I had a big load to carry--was what I told myself. 

    However--man, I can't help but smile while I'm writing this!--God has been teaching me some wonderful things. 

1) Leo doesn't need to be FIXED! He's good just the way he is. He was designed this way. His physical body isn't an accident. The God who created the universe and designed complex systems within complex systems in organisms did not miss something and thus Leo ended up with a brain injury. He gave Leo a physical body with a brain injury and subsequent physical issues. God gave Leo a very difficult body. But none of us have a perfect body! And I am not denying the frustrations and suffering of being in Leo's body by saying this! God called him to something difficult. But my boy needs to know and to feel that he is enough. He doesn't have to make his body do something that a neurotypical body does naturally in order to receive praise or affirmation. And he shouldn't go through his whole day feeling like he's always practicing a movement and never allowed to just be in his body. So he doesn't need to be fixed: therapy isn't to fix him. 

2) The reason we do therapy with/for Leo is to help him be has independent as he can be and to give him the best quality of life that we can. Again, not to try and get him to as "normal" as possible (these things may look the same to you, and sometimes they do, but the heart/mental piece behind each of these approaches is very different).

3) Ok, I need to make this thought more concise because this one is a very global concept in my mind. 

In the same way that Leo doesn't need to look or act like a neurotypical kid, he doesn't have to engage--with toys or people--like one either. (This may seem unrelated to the therapy conversation to you, but in my head it's related. Take that for what it is :))

Meaning, I had been carrying around stress about Leo and playing. For example, I pictured Leo laying on the living room floor with toys while I make supper in the kitchen. Now, a neurotypical 3 year old would be running around, making a mess, watching tv, coloring, etc. They could entertain themselves and/or be in your face while you're cooking dinner. And I had this voice in my head that said two things: 1) you're not experience real parenting because your kid isn't running around demanding your attention like a normal 3 year old. And 2) you can't leave him there by himself because he can't even play with the toys by himself. You're not being a good mom. You're slacking off. He's not playing with toys or doing anything. He needs/wants to be doing something. You are supposed to help him engage like a normal toddler. 

And here's the beauty of this 3rd concept that I've been learning. Leo does engage with the world around him. But it looks different. If he's laying on the floor with toys around him, he has the opportunity to engage with the toys by himself. He may see one and then need to figure out, "how do I get my body over to that toy?" He's practicing moving with intentionality. Also if he's upset and/or wants me, he communicates it. He can't run to my feet and grasp for my hands, but he's communicating to me that he is unhappy. It's just different. But my point here is that Leo engaging with his environment looks different than a neurotypical kid engaging with their environment, and different isn't bad. It's just different. 

    All of this leads me to this moment at the coffee shop with Betsy, Isaiah, Leo, and me. The boys were sitting in their chairs next to each other. For about 45 minutes, the boys engaged with each other and were absolutely delighted to. Leo's head was turned to the not preferred side. He continuously vocalized happy noises toward Isaiah. He watched Isaiah's movements and made happy noises. He was entertained by Isaiah. He reached for him. Isaiah smiled at many of Leo's noises. He worked really hard to turn his head to look at Leo. He got his hand on Leo's stroller. He cooed and laughed again. 

    I used to think that I had to help Leo do things. I was supposed to take moments like this one in the coffee shop and use them to stretch his ankles out or practice grasping or help him engage with a toy so that he could do it independently eventually. And those are not bad things for Leo to do or for me to help him do. But carrying that weight around? No, thank you! Believing that you always have to be doing something in order to be spending time well. No! I've started to look for how Leo is engaging or what makes him content or happy, not what the stress is telling me he's "supposed" to be doing. I now look for how Leo is engaging and not how is Leo engaging in the same ways that a neurotypical kid engages. Does that make sense?

    So as Leo and Isaiah sat there, they enjoyed being together. They didn't have to play with a toy or make up a game or go find a hiding spot. They took in their surroundings and found joy in the other's presence and company. They laughed in the differences between them. They were aware of each other and of mom and it was the sweetest thing. 

    My heart looked at those boys and saw contentment. And one of the sweetest things to me is that God has been teaching me that stillness is healthy for me. Boredom is healthy for me. Less external stimulation is healthy for me. Listening to my thoughts and God's words to me in the most mundane moments is healthy for me. I don't have to do anything to earn love or value. 

    And do you know who's really good at just being with someone? Leo (and Isaiah). And it's because of the way that he is that he shows me that so clearly.  

    I hope the sweetness God has been teaching us lately comes across in this writing.