We had a rather hair-raising experience the other day. I'm a weather watcher, I grew up in Oklahoma, my Mama is a weather nut, and the movie "Twister" is in my DVD library. As a child, Mom and I watched the tornado that destroyed Edmond in the 1980's go over our apartment. I love a good thunderstorm, the sound of rain, the smell of the air, and the beauty of God's design of the whole thing. But when I got out of the hall to check the sky (yes, I know... I just TOLD you, I'm an Okie!) and saw black toward downtown and greenish sky and still trees, I went back in with the family. Something about having little ones to protect changed the way I feel about these things. Shortly after I got back in the hall and all the hall doors were shut, it sounded like something was trying to scrape the tiles off the roof. Not for long, but it was loud. Then it got quiet. Yep, it scared the bajeebers out of me. Eric and I looked at each other with that helpless, terrified look, and a few minutes later we got up to see what happened. We had some things blown around in the backyard, but that was all. Big things... just big enough to tell us that something had really just happened.
That was just the beginning of a long night for our sweet little town. Our home, our family, and our belongings were spared, and since the tornado (which was later called an EF1) never really touched down, things were not near as bad as they could have been. God was merciful! But it was a night of waiting, rolling with it, and praying for the best. We did spend a whole lot more time in the hall. One of the most amazing parts of this to me isn't the storm itself, but the peace in our house!
If you've read this blog at all you know how important routine is for our Ryan. Now take what you know about him, throw him in about a seven or eight foot long by about three foot wide space and add to that mix his 2 1/2 year old brother, his 14 month old sister, his father and I, and our Australian shepherd. Remember, we had no power and all the doors to the hall were shut, so no air conditioning and no air moving.
Kinda makes you wish you could have been there, huh.
What do you mean, "not so much"?
Seriously, Ryan was fabulous! Even when I was shaking and near tears trying to convince he and Richie that this wasn't the time to wrestle, he was just fine. Completely didn't see what the big deal was. Richie, even at his young age, was feeling my fear at times. He cried a little, and so did Maelynn. But Ryan had the ipad and was completely oblivious. I'd be willing to bet he thought we were being a little silly!
Oh, to be that confident in crises.
If I could only be that immersed in the Word and the peace that God wants us to have that I could honestly look around and wonder what the fuss is about! So often I am shaken by small things. A comment, a sideways glance, a misplaced binky, something forgotten, a word said in frustration- all these things, I'm sad to say, throw me for a loop at times. The frustration that I feel prompts me then to pass on the frustration by speaking too quickly or out of my feelings, not what I know to be true. The world tells us constantly that we have every right to defend ourselves, and to a degree that's true! We are to be our children's advocate (in my case). But before I speak, I'm learning that I must first take some time to figure out what I'm defending. When something is said about Ryan that cuts me (and it happens), if I were to go into defense mode every time, I'd eventually alienate everyone I know. This would be a tragedy, because just life with a special needs child itself tends to quickly lend itself to alienation. Having a child who wanders and doesn't communicate things like his name, his parents' names, etc., doesn't understand conversation, and tends to melt down in new and different settings is pretty socially crippling. One thing I've come to embrace is that as a parent of a child with an "invisible" disability is that as he gets older, I'm going to get my feelings hurt, and often.
Why in the world would I want to embrace that?! Sounds nutsy!
Because it's the truth.
As we all know, the truth will set us free.
See, when something is said or happens or doesn't happen that hurts my "feelers", I am at a crossroads. I can make a choice of whether or not to react immediately. At this point in my life, I'm faced with the reality that Ryan is no longer a baby. He is too big to be in the nursery at church, but can't handle being in a classroom setting without some sort of trained assistance. Most kids his age could walk to Sunday school then meet their parents in the sanctuary for big church. Not so much Ryan. There is no telling where he'd go if he were turned loose. So most children's programs at church just aren't going to work for him. Not without special assistance, and some just won't... and that has to be dealt with in my heart.
Our church is doing its best to learn to meet Ryan and other special needs kids where they are. And I can't say that anyone has set out to hurt Ryan's or my feelings. No one at church that I know of has sought to leave him out, say ugly things to him, or discriminate in any way. But things do happen at church and everywhere nearly every day that bruise my mother's heart. I want him to be who God wants him to be. Truly, I do. I want this for him because I know from experience that this is the only way to be truly joyful, content, peaceful... and it is certainly the only shot at happiness. So how do I deal with this?
Here's where I am right now. I do have a rather soft heart, for which I am thankful. It's how God made me. I never want to lose my ability to empathize or sympathize, or my heart to serve or simply care about others' feelings. To learn to let the comments roll off, "like water on a duck's back" as Nanny would say, is not one iota easier for me today than it was in high school. So I've got to change my strategy. After all, the truth is that my son is different and it's going to keep showing up and kicking me in the gut.
First, I have to accept that he is different. He has limitations that may or may not last, but the truth is that they're here now. It's not my fault, it's not his fault, it's not anyone's fault. He is who God made him to be! I must do my best to lead him to the throne of God, to teach him the ways of the Lord, and to teach him to love others. If he can't participate in church as much as a typically-abled child, how does that happen? Gee, I guess I have to do what I've been called to in the first place... to do it at home! It could be that church is just going to be hard for him, and the most he'll get out of it is socialization... which is hard for him! The bottom line there is that I am to obey by teaching him the ways of the Lord in the best way I can, and God will do the rest. I keep him in church as much as I can, but keeping in mind the idea is to inspire him to love God and love others, not to make him a slave to a certain culture.
Second, I have to realize that it's not everyone else's fault that my feelings get hurt. It is not everyone else's responsibility to make sure I feel loved. I must accept responsibility for my own feelings- hurts and all. The sooner I accept that this is going to be hard and it's going to hurt at times, the better off I'll be, and by extension, the better off Eric, Ryan, Richie and Maelynn will be, too! Because we all know that old saying, "If mama ain't happy, ain't nobody happy!" (ouch... it's true, isn't it, ladies... and what a responsibility.) So when faced with a situation, it's far better remember that most of the time, someone is trying to be helpful, and has no idea that what they're saying is offensive. To realize that my feelings, hurt or otherwise, are my own and are to be dealt with in my heart and with the help of the Lord releases me from the desire to "fix" others. I'm not saying we shouldn't lovingly educate... but lovingly sharing information has to be done in the right context, or we hurt our cause instead of helping. Once when I was talking to my great aunt Gladys Mae, I was telling her how much I'd love to see her the next time I was in town if she had the time to come to Nanny's, too, but that I understand if she couldn't. I went overboard telling her how much I don't want her to feel pressure to be there... and she said the most amazing thing. "Don't tell me how to feel! How silly! You can't control how I feel!" and she laughed. How true.
Third, I must realize and accept that the typically-abled children in the church have needs, and to make sure that I don't reverse-discriminate. Recently a sweet lady wanted to do something fabulous for the spiritual growth of the children in the church of similar ages to Ryan's. This is a wonderful opportunity for them! She came to me on her own to make sure I knew what was going on, and to give me the news that it was simply something she didn't know if she could include Ryan, but was willing to try. This meant the world. I cannot tell you how many times I thanked her for coming to me... for making sure our feelings were acknowledged and for expressing her desire to make sure Ryan is involved in whatever he can be. This is something that is beyond Ryan's limits, and I know that his involvement would not just complicate the program (which is only a few weeks, by the way) and render it almost impossible. We also spent time talking about how we can help Ryan be included in other things in church. Our church is not huge, it is not a mega-church by any stretch... but it does have a heart to be an Acts 2 community, and this is a way we want to work to improve our effectiveness in the city. If I insisted on excercising his right to participate in the program, please trust me when I say that it would not have been a good thing. Sometimes knowing and accepting our limitations is the key to being appreciative of what others are genuinely trying to do. Between Ryan's limitations and the limitations of the size and placement of the church itself, even with cooperation from both parties, there will be things he just can't do. That is deeply disappointing to say the least.
Enter the crossroads.
Disappointment, hurt feelings, frustration, the fact that very few people really "get it" as far as our everyday lives and limitations... all of this is heard. Every tear we shed, every word said to each other as we journey down this road, hand in hand, Eric and I, is seen and heard. The Lord is there, and He hears our cries. Although we can't see the future and it all seems to be falling apart in ways, He knows the steps. When we can't see what the next step is, even when the next step looks like it's right off a cliff into the unknown or even the dreaded, He reaches out and reveals the next step as soon as we lift a foot. This time, the step is for us to be more like Ryan. Although certain and even predicted disaster looms on the horizon, even when there is justified cause for anger, alarm, and panic, if we will calmly step back for but a moment and allow the Holy Spirit to reveal the big picture, He will show us the next step. If we are too tired, too weary from the journey as we often are, He will lift us and carry us to the next step. He will give us encouragement along the way as He always has! And just as God gifted all of us with not only safety but a peaceful Ryan in the hallway during the storm, He will give us peace and clarity in our decisions if we will only step back and choose to rest in His promises and choose His peace. Easier said than done, I know... but I've tried it both ways, and I can tell you that the blessing of His joy and peace is amazing.