Leo is 3

 *disclaimer* I just need to say that this post was written many times. Many things were written and then deleted. Paragraphs were switched around. Some sentences just didn't make sense at all. Trying to reflect on Leo's life as a whole obviously leaves me a bit at a loss for words. I think there's some good nuggets of truth in here. I know that scattered nature accurately reflects my mind as well. So, here's some thoughts from Leo's 3 years of life because I want to say so much but I never felt like it came out the way I wanted but I don't want that to keep me from sharing it :)

A reflection on Leo's 3 years of life, from the perspective of his mom, written without fear of offending or coming across arrogant...

I wish that his birthday brought only happy memories and not all the painful ones. We are overjoyed at who Leo is and how he is. We see great strength in his differences and interest in a life we never thought we'd have. But the very moment he was born began the darkest time of my life. And our bodies remember trauma. Grief comes up and you have to work through it not brush it away. 

That's been a big theme for me as we approach Leo's birthday. I don't want to be sad. I'm angry that I'm a bit irritable or overreacting to small, unrelated things. But I'm trying to give myself space to not be ok even if I feel like I "should be" ok--or if I genuinely feel ok! That's the most frustrating. It's like I'm feeling happy and content but something still comes in to show me that I'm off. My body and mind remember the anniversary of trauma--which also happens to be the day my son came into the world and it's weird that they coexist. 

Also, I feel guilty that these emotions come up and it feels like I'm writing all about me when Leo's birthday should be about him...

But looking further back,

Leo has grown so much in 3 years. His joy is so infectious. He has such a beautiful and good life. That kid appreciates people so well. He charms every therapist and thrives on attention. He tries things that are difficult. He expresses what he's feeling in big ways. He delights in simple things and in people. He's not distracted by a lot of what I'm distracted by. He's incredibly forgiving and he's good at accepting help. He doesn't know not accepting help, but he could receive it very differently. He lights up when Daddy praises him. He beams when Mommy hugs him. He appreciates music and shares it. He thinks Mommy's the prettiest, and great grandma is the greatest. He is refreshed by the outdoors and relaxes at home. He likes talking to Jesus. He loves the company of his night nurse and the playtime with his therapists. He's intrigued by little people moving around. He's eager to taste and eat orally. He's fidgety and very familiar with blankets on the floor. 

As the person who gets to help Leo do things every day,

Wow. Words fall short to explain how Leo has changed my life. But I really want to try and explain some of it.

At the beginning, I grieved certain losses. Anytime I saw a kid who could look their parent in the eyes, bring their hands together, utter consonants, jump up and down, or eat by themselves I would get mad. Those things don’t make me mad anymore. I do miss them. And the nature of grief is that it can always make an appearance again—but it can get shorter and less intense. But now, I see Leo’s physical and mental disabilities and I see that they’re just different not less than. 

Leo can’t say words. It doesn’t mean he’s stupid. Leo can’t stand at my feet and tug at my pants for me to pick him up. Leo can’t get into everything (our house is frightfully not childproof). I used to think that those things meant that I wasn’t engaging with Leo like a 3 yr old. I wasn’t engaging him enough because I could leave him on the floor while I shower. And if he was totally mobile I couldn’t do that. So I’m treating him like a baby. Does that thought process make sense? But slowly I started to realize. Leo isn’t going to act like a typical 3 year old. He’s different. I don’t need to try and treat him like a typical 3 year old. I do engage with him a lot. It just looks different. But that doesn’t make him any less of a 3 year old. Just because certain things make him seem “younger” doesn’t make him truly younger or any less than a kid who seems “older”. Now take that and apply it to anyone, special needs or just different or weird. Are they acting weird or embarrassing to you? Maybe wonder why. What have they overcome? What are they valuing? What are they communicating (even if it’s not in the way that you think it should be communicated)? Ugh. This feels wildly scattered and not clear, but these are some things that Leo has me thinking about. 

And can I just tell you how much pressure came off and how much joy came in when I realized this:

Leo could stay EXACTLY as he is with no mobility or developmental changes and be JUST FINE. What is “just fine” you say? Just fine = life with purpose, joy, relationship, relationship with God, a good life!

This kid—this little lion man—needs to KNOW and FEEL that he is enough just the way he is! We don’t want him to feel like every second of the day he has to be correcting his reach or trying to turn his head a way that his body fights. He doesn’t always have to be fixing his body. And guess what, therapy isn’t to FIX him but to help him. We wanna help him be independent. But we don’t want to fix him. We want him to know that his fun experiences, his communication, his way of relating are all good! Man, when Jesus made that clearer to me it made therapy and our days so much better. I firmly believe in enjoying Leo exactly as he is. Leo was designed this way. The God of the universe, who knows every hair on your head, I don't think that something got away from Him and He accidentally let this happen to Leo. None of us have perfect bodies. And the imperfection and mortality of our bodies shows me that there's more to this earth than just the physical life. Yes, Leo has physical difficulties. It’s hard. It’s very hard. He also has a good life. And the good life and the difficulties do not take away from each other. It’s all true at the same time. 

With weight gain and puking issues, I have come to find that not being able to give my child his most basic need is a sick feeling. It brings on this really weird battle internally of trying to manage all of the practical things to figure out how to feed him best while also not taking personal responsibility when things don't turn out the way that you want. It's so frustrating when I tell Brad that I get anxious at the thought of the doctor changing Leo's feeding schedule because that determines so much of my day. And there's some ptsd around the whole thing. Brad will often tell me, "Charis, you're taking it too personally. None of this means that you're a failure." I understand that the weight gain issues are not because of my failure, but also I'm the one who actually does whatever changes they are suggesting so... To be clear, Brad is also very understanding when I'm anxious about this. I'm just trying to explain the internal struggle I have in regards to feeding anxieties. 

On this topic, when I see or hear a mama say, "I just wish they would stay this small forever!" I often just want to ask her to appreciate the growing and thriving child that she has. I know change is hard. And I don't want to take that away from anyone. I want to share my perspective and say that the reality of a child not growing is an inexplicable stress. So, to my mamas with growing children who are a lot to keep up with, I ask that the next time you are at your limit, you take a breath and take in the gratitude for the growing little bodies. 

Being Leo's mama, I feel freed of how I'm "supposed" to act. I feel motivated to love people where they're at. I am eager to learn to embrace difference and throw off unimportant assumptions. I see heaven and earth a bit more clearly for what they are--meaning earth as a finite and imperfect place while heaven is our eternal home with God. I still struggle with wanting to and thinking that I control things that I really don't. But I've also been pushed to my own limits to see more clearly what I don't control and what I do. I see that life is so much more than our physical abilities, but I also have a newfound appreciation for mine. 

What I'm trying to say is that Leo has changed my life. Grief is hard. Life is hard. I'm so thankful for Leo. I'm still learning to be thankful for all of our story. I'm grateful for a space to share. I hope our musings can expand your world a little bit and hopefully help you see that God who made it a bit better.