You Make Me Brave

IMG_3197A couple of weeks ago we went to the beach for the day. If you don’t know Joel, he LOVES the water. It’s so hard to get him out once he’s in. He’ll yell and hit and push us when we try to get him out. Usually after some struggling, we can get him out. Luckily he usually stays close to the shore, but this time he was more gutsy.

My dad joined us this time for the trip and took joel further out with him. No problem with that until we got out of the water for some snacks and my dad never got back in. Joel was thinking hey, my dad let me go far so I can do it again. By the way, my mom and I are very short and not very good swimmers… we couldnt go as far as my dad did. And I have a huge fear of deep water. If my feet can’t touch the ground I panic.

For some reason, he didn’t go that far until we were trying to leave. I was tying to hold his hand and pull him in, and he’d resist and get further away. My feet couldn’t feel the sand and I was so nervous that he’d get way too far me. I could see him struggle and get scared when the waves would get too high and I saw him inhale water. But the more I tried to pull him in, the more he put up a fight.

There was a man right next to us who refused to help by the way! Ugh!!! Anyways, my mom came to help but she’s just as week and nervous as me. But slowly somehow we got him close to shore. There Joel decided to push me and yell at me and cause a scene. My dad finally showed up and showed Joel his laser tag card and he yell “yay!” And got out… that’s all it took.

Fast forward a couple of weeks to now, I am currently in Guatemala serving in an orphanage with an awesome group. We got together one night for an amazing bonfire worship. One of the songs that we sang was You Make Me Brave. I always loved this song but that night God used it for more than just a good song. I was getting all kinds of emotional throughout the night but while I was talking to a few people afterwards, I began to see the ways God makes me brave in situations like this that I didn’t really think about. I’m scared of deep water but I remained by Joel’s side because God gives me the bravery I need to be there for him in situations where I probably couldn’t do the same for myself or others.

As a result, Joel has an ear infection because of the all the water that got in. He also may not be going to the beach anytime soon.  My poor baby…

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Thank God Joel has Down Syndrome

So my family hosts a home group every Friday in which some people from church come over and study the bible to together and what not. Usually at the end of each night, people tell the group if they have a prayer requested or they have something to share.

On last Friday a lady had something we wanted to share. Apparently she had asked the group if they would join her in prayer for a pregnant friend who was told by doctors that her baby might have down syndrome and they wanted to run more test. — That’s understandable. But what she wanted to share was that God is so good because it turns out that the baby doesn’t have down syndrome. Apparently the doctor made a mistake, but thank God the baby is okay. Okay? So a baby with down syndrome is not okay?

I immediately looked at my parents when she said this but they seemed to not be bothered by it. But I was so shocked that she said that. She knows she is in the home of someone with down syndrome. She spoke her words with such confidence and pride that God had answered her prayer. That was so merciful because he didn’t give that baby down syndrome. So, what does she think of my family? Does she think it’s a curse or a punishment? Should we be grieving that Joel has down syndrome? Should we not be grateful to God that Joel has down syndrome?

My parents reaction left me a little upset at them.  How did they not say something? How did they just look at her and nod? I was going to say something, and maybe I should’ve, but I didn’t. I don’t know if my parent felt what I did, I feel like they should have, but who am I say this? I did mention the situation to my mom the next day and all she said was yeah, this lady doesn’t know. That’s it. I don’t know what I expected. I’m not trying to make my parents look bad. They just have different views, grew up in a different time and in a different country. I know they love Joel and protect him, and I know I am not a parent, but I felt strongly about this and I felt they should have too.

All I will say now is I Thank God Joel has down syndrome. I know it may not be something people ask for but I am happy God gave us Joel. I know all of our lives would be completely different if he didn’t have down syndrome. I am grateful that he was created this way. No pity, no prayer requests on changing this, no.

Comparing

BEHOLD: Joel in all his glory posing in front of the Waterwall in Houston in the spring of 2015. I like this picture of Joel because he’s doing one of his favorite things, posing. I do not know what kind of pose he thinks he’s doing but he thought it was hilarious.

Growing up, we did not interact or spend a lot of time with other people with disabilities.  (In fact, I didn’t even know Joel had a disability until I was like 8ish… I’ll explain that in another post) This was not because we tried not too, but because my family doesn’t tend to go out look for the opportunity to do so. Part of it could be cultural and the language barrier, but I as I got older I wanted to change that. Up until about 4 years ago (Joel’s first time going to Lions Camp) his only interaction with other people with disabilities was through school and the occasional bump in at the mall or something.

When I started working at my current job, Families Helping Families ( which is our state’s PTI) I learned about so many more opportunity for Joel and I tried to get him involved in as many things as possible. Like Miracle League, Special Olympics, Crossfit, other camps, dances, and all kinds of other random activities and events. So he now does sports basically year round and he loves it. But there are few things that I noticed: parent cliques and the difference between Joel and the rest of kids. (Kids?? other people with disabilities? participants? you know what I mean.)

So without further ado… Comparing:

I was sort of ignorant when it came to down syndrome, I knew the basics, the things they teach you in school about it, and would see an occasion random story on my Facebook feed about someone with down syndrome. But overall my view of down syndrome was limited to what my experiences with Joel were.

With that said, let me tell you about Joel and how I compare him to the others:

He is kind of mean to us most of the time when he’s playing sports, like he gets mad when he watch him too much, doesn’t respond well to our cheers, kisses, thumbs up, and waves, and doesn’t want to be near us unless it is time to go. And I would compare this the way most of the other kids interacted with their families. A lot of them were loving and blew kisses and loved the praise and attention from their families. Basically the opposite of Joel. Now, it’s not as bad as it sounds. He glances over to us during the game to make sure we’re watching. He’ll tell us he had fun, smile, and sometimes even hold our hand when the game is over. But it is still different from the way most of the other kids show there affection and I got jealous at first.  I have come to the conclusion that this may be all the affection we will get from him, at least during sports, and that’s okay. And to be fair, he doesn’t always get mad at us and at home he is much more affectionate.

Joel is also mostly nonverbal. He tries his best to communicate and but he can only say a handful of words. Somethings you can only understand if you spend enough time with him. And once a gain I would compare this to the other kids, specifically the other kids with down syndrome. They all talk. Some talk way more than others but I haven’t met a single one who has speech as bad as Joel. This made me very jealous, and I know I shouldn’t be. Everyone learns and grows at their own pace regardless of whether or not they have a disability. I have seen his speech improve, in the past couple years but it is still pretty behind most of the other people with down syndrome that I have met. Even the younger ones. It used to bother me, and to be honest it still makes me jealous at times. But I am coming to terms with where Joel is. If I keep comparing Joel to others, I won’t be grateful for where he is. And I am grateful for where he is. I am so proud of him, he has come a long way and has more to learn. Even if he doesn’t improve his speech, it’ll be enough for me.

The Cliques: I’ll write about this later on.