Leo, Our Little Lion Man

      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 o...

    Recently, we've been getting this question more. And I want to be honest, I don't quite know how to answer that question. I believe it is asked with sincere desire to see the difficulties we/he have, and to seek to understand something that is not experienced by the person asking. But it's a little weird to answer and I want to try and explain why...     When Leo was younger, this felt a bit more applicable. We had specific questions that we were trying to answer and there were still some typical milestones being met. I think that's the biggest thing. We had specific questions that we were trying to answer. Leo was failure to thrive. We couldn't travel without him drenching himself in sweat in the car seat. The stroller was a similar story. We were seeing new specialists or finding another doctor. We were starting a new therapy, practicing a familiar one. Etc. Etc.      And in our current stage, I don't feel like we have as many or as pressing spec...

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    I don't know why I'm having a hard time starting this post. So, see I've been floundering with writing another update because I have this internal conflict. One side says, "I need to talk about Leo, how he's doing, and nothing else." The other side says, "There's not much to update on so do you need to keep writing?" And, yet, another side says, "Your friends read this to hear about Leo, not your thoughts."     But, in reality, this blog has changed its shape. It started the night Leo was born. It was a way to tell our community what was up for Brad, Leo, and me as the world as we knew it had shattered. It was way easier to write one post than send a thousand texts (and that's zero complaint about having community and people to text). It was literally the medical updates that doctors would give. And throughout Leo's life, those have gone from multiple updates in a day, to multiple appointments in a week, to months and months...

God gave me a sweet gift in parenting today. I think that lots of parents have experienced something like this in their own way. I also think that Leo being not neurotypical means I experienced this in a different way. I want to share this because I hope that other people--parents specifically--can relate and not feel alone. I also share this because I want to express a way that Leo's therapies can affect how I view things. So, I want to relate to people by feeling like this is a normal parenting thing, and I also want people to see how my parenting journey is different... (just to be clear, that doesn't mean that I have to get both of those things. just recognizing in myself that i am desiring both of those things) I've been anxious today for a variety of reasons. And--time for a personal moment here--recently God and I have been talking through my screentime habits and how I use watching a screen (tv shows or social media) to escape my anxious feelings. Screentime is how ...

 Pictures that--I think--do not seem like significant things, but mean something significant to me.  A book in Spanish, a coffee shop, and Leo's stroller and food. It's a defiance of expectations: expectations from my past self and a perceived social norm. My past self thought that speaking to him in Spanish or being out and about with a g tube were not possible. When we learned the extent of his brain damage, I questioned the reality of teaching him Spanish. And, while I wish I spoke it to him much more than I do, it's a sweet opportunity to communicate to him, myself, and others that he is capable of learning even if initially his level of comprehension is questioned. And it reminds me of the greater picture, too. One of the best parts of being Leo's mom is that I get to expect things from him every day. Being immobile and nonverbal his communication or lack thereof can be perceived as a baby's level of comprehension. The truth is his comprehension is there. And I...