It has been SO long since I've updated my blog. In case you haven't followed along on Facebook, the past 4 years have been so incredibly busy and insane in the best of ways. I graduated law school, passed the bar, and started my law career. Talk about BUSY! I still homeschool my boys. Also, crazy busy! We have switched Christian's care back to our local children's hospital from Indianapolis, under the care of an amazing and compassionate surgeon and Christian had a HUGE surgery last year. Coronavirus hit and threw the entire world for a loop. Life has continued on and we have been living it for sure! Now that things are starting to finally find a normal pace again, actually a bit slower than what we're used to, thankfully, I want to try to get back to writing. It's been my intention for about a year now, and here I am finally putting fingers to keyboard once again! 

So thanks for reading. I hope you enjoy! As always, join us on Facebook, Instagram, and Youtube for more fun adventures in the life of Christian! 

Having a typical child and a non-typical child has always created some different dynamics. Sometimes in good ways, sometimes in difficult ways. Having a typical child along side Christian has always made me check myself and make sure that I am not limited Christian because of his disability. If I am allowing Chandler to do something, I better have a really, really good reason if I am not going to allow Christian to do it, too. Christian will demand a good reason because I have raised him to demand he be treated equally to others. He will also insist that he can do whatever Chandler does, because I have always made it a point to let him so he will know he can do anything. 

But sometimes, the dynamic is difficult and I can't always just fix it. Sometimes, Chandler is playing a game on his tablet that there is just no way Christian can access and actually play. I let him play, of course, but he will die quickly or not be able to complete the tasks. It's frustrating for him at times. Chandler always offers to step in and help, but Christian is so independent and dead set that he will do whatever anyone does, that he gets frustrated with needing help. Explaining out loud to Christian why he fails at a game and Chandler does not is a bit awkward on my end. How do I tell my child that he can't see like everyone and never will and therefore this is something he will never be able to do like everyone else? I despise having to put limits on him, but sometimes I struggle to find a way around it. It's also a bit painful for me. Most of the time, Christian is so adapted to his environment that I don't even have to think about his blindness, but occasionally it comes up in ways like this, and that tinge is pain returns. 

It's always there, to be honest. Deep down in a place I try to keep a secret from others. It's not like I can tell people. It makes them feel pity, and I don't want pity. Or it makes them feel uncomfortable, and I don't want to make anyone feel uncomfortable or like they have to share the burden of what I carry. What I really want is for Christian to see, but second best since I can't have that, would be to just be heard and have people be understanding of and non-judgmental of his limitations. Nine years into motherhood, I can tell you that I will more certainly carry that pain to my grave. The pain of knowing that Christian doesn't know what my face looks like and that society may never consider him its equal. But I try hard to never, ever put that on Christian. It is not for him to carry. Only a mama's heart will be able to really understand it, and so I don't plan to ever allow him that burden.

In learning as we go about how to do these things I mentioned above, adapt, make sure Christian isn't carrying an undue burden, and that he is strong and resilient in the face of his adversity, it has been an interesting and beautiful challenge to accomplish.

We haven't had just one day where we sat down with Christian and said "Ok buddy. We need to tell you something. You're disabled." I decided a LONG time ago that this would not be how that went down. I decided that as Christian grew up and learned about his differences, I would interject appropriately within the context of our lives. There would never be one day where we just laid it on his shoulders to carry like a burden. It would be an open and on going and HONEST conversation about his differences, framed in a light that reflects his value and worth as a human, his perfectly created self who is loved by his Creator, and framed in light of his abilities and strengths rather than his disabilities. 

What this has ended up looking like is sometimes short and sometimes long conversations that start when Christian discovers something and asks a question. He started realizing several years ago that strangers in public asked "Why does he look different" a lot. He heard it, and then heard my response, and then asked me about it. He asked why he looked different and what that meant. He was pretty young the first time he asked so I don't think there was some automatic grasping of the concept. I think now as he's gotten older, if you ask, he will tell you he has a facial difference, but he couldn't possibly tell you exactly what it means. He knows that it means he's had to have surgeries on his face. He knows it means he has scares. He knows he is beautiful and amazing. His facial difference is not a sore spot for him. He does not know that some of society sees him as lesser-than because of it. I have purposefully crafted my responses to his questions to shape it that way. His facial difference shouldn't be a sore spot for him. It's just who he is. He will matter-of-factly and boldly proclaim that he is different and that he loves himself. There is nothing in Christian's head that says being different equals bad. Having a facial difference is just part of who he is just as if I told you I have blonde hair or that I'm 5'3''. Recently, when he was about to have a surgery on a place on his skull that is missing, he told me that he wished everyone had a missing piece of skull like him so that there wouldn't be a need for surgery. He didn't wish that he was like everyone else. He wished that everyone else was like him. 

The adaptations that come from this realization are the fun part to watch though. Christian is so stubborn and hard headed (most of the time in a good way). He will not be told he can't do something. He always finds a way. He will climb, crawl, jump, or ride anything to do what his peers are doing. Chandler has really been instrumental in helping with that, and I'm sure he doesn't even know. Christian has followed Chandler's example since before he could say his brother's name. I remember a time when they were both toddlers and Chandler showed Christian how to climb on the stool in the bathroom to reach the sink so they could play in the water. 

Besides being his partner in crime, Chandler has always been his brother's keeper. I have been so careful to try to make sure Chandler never feels like he has to care for his brother or that his brother's disability is a burden for him to shoulder; or that the extra attention Christian has required at times is a favoritism thing.  But from a young age, Chandler, the ever empathetic one, has just picked up on the queues. He has seen Christian's need and has stepped in in ways that I can not. He would see one of my hands full of medical supplies and snacks and diapers for my 6 year old and the other hand holding Christian and would just know that he needed to hold open doors for me. He wasn't taught or modeled it. He just picked up on it. And he's done the same for Christian. When Christian would drop something in the floor and not be able to find it, he would go and pick it up and place it in Christian's hand before I could get there. When Christian wanted to go to another room and play, even though he could totally walk their himself, Chandler would hold his hand and guide him there. When Christian needed help, Chandler would step in and try to help. 

Now that they are older, he continues to develop this attitude of understanding about Christian's needs. When we are out in a busy area, he will check to make sure I have Christian's hand and if I have to let go for a second to adjust my bag or pick something up, Chandler will say "Mommy, do you have Christian?" or he will hold Christian's hand himself to keep him safe. He makes sure his brother is safe.

Recently, he and Christian have developed a method to playing on the tablet that they enjoy. They will sit together, choose a game, and Chandler will play while Christian listens. While they do this, Chandler will narrate what is happening to his brother. Christian will ask questions and Chandler will explain what certain sounds mean. It's just one of the small ways that they have adapted to their environment. The giggles that ensue are priceless to this mama's ears and heart. 

I have never sat Chandler down and had a conversation with him about his brother's needs or how he needs to interact with Christian. I have never told Chandler that he has to place things in Christian's hands rather than hold them out, or explained to him that Christian has to hold my hand in public for his safety. It has come in small, informal days of just living our lives. It has come slowly through every small interaction. It has not been flawless or smooth at all times. Some days it's beautiful and others it's a total disaster of trial and error. 

I am always thankful to get to be their mama. They make me proud and drive me crazy and I wouldn't trade that crazy for all the money in the world.