Monday, January 14, 2013

The Community

One thing that Matt and I are internally struggling with is how much we want to seek out the "Ds Community". On one hand, we are so thankful for a clear definition of what Johnny has and that we can reach out to others who have some sense of what we have faced, are facing, and will face. On the other hand, we think we are determined to set the course our own way and don't want to get distracted by ways that may not work for us or our family. And yet on completely another hand (maybe it's on one foot), a part of us is scared, scared of what T21 looks like down the road. 

As I said, we are so thankful for a clear diagnosis for Johnny. Matt has a friend from high school and we know others whose parents have felt very alone in a journey like ours because there is no clear definition of what they or their child has. There is no one to tell them that a certain action or struggle is normal, or that it gets better, or to be on the lookout for x, y, or z. While everyone's journey is unique, I can only imagine that, as hard as this has been on us, it would be harder still to not have a vast array of experiences to look at and see a future for our family, to be able to predict where some hardships might be, and to see the joy and normalcy that it can all become. I mean, seriously, as foggy as this journey has gotten for us, we have some clear beacons that keep us on a road we would like to travel. I think we would feel much more lost without some sense of the people who forged the road before us. And as difficult as the "wait and see" is, there are others who have no clue what is going on with their kid and have to rely solely on faith. Faith has been a huge part of this process, knowing that we were meant to be where we are, but we are strengthened by not feeling as alone. 

That being said, I have been hesitant to plow into the T21 community and accept my membership into this "club" because of our deeply set desire to do things our way. We refuse to accept, at first glance, the expectations society has for Johnny. We refuse to let other's pigeon hole him into what they think he should be. We understand that he might end up much like the "stereotype" and that will be ok as long as we are given the chance to make sure a) that is what he wants and b) that he is working hard everyday. So we are hesitant to join into groups, not knowing the expectations and desires they have for their kids, and not knowing if we will be labeled as people that have no clue what we are getting into. 

Also, we are afraid of seeing a reality that may be similar to Johnny's. Because we want so much for him (just like with the girls), we don't know whether we will be encouraged or discouraged by seeing kids older than him. We aren't sure if we want to know what is ahead of us. Honestly, I think I have more difficulty seeing older kids with Ds now than I did before. Before, I had such a mentality of "Bless their little hearts". Before, I good easily pass a smile their way and think to myself, "Good for them, working as a sacker or helping out in a fast food dining room." Before, I thought of them as being great, but in the context of them achieving normal things in relation to them being "less than". I am so afraid of that with Johnny. I don't want to see his characteristics in the faces of others. I don't want to see others that look like him struggling. I don't want to see people thinking "Bless his heart" or "Good for him". I just want him to be normal. And so I'm afraid of jumping too far into the community and being surrounded by the constant reminder of "this could be it" because I am still dealing with it all myself and learning to throw out the old thoughts and to bring the new thoughts to the forefront. 

It's been so challenging to find the courage to go so far. I have made myself so worried of going to the handful of events that have already taken place. Part of me needs to go though, part of me needs that guidance from others. And I have to remind myself that even if I go, even if I am in desperate need for guidance and even if I don't get it, that it isn't a waste. I have to remind myself that at least I am putting myself out there in a safe environment. At least I am trying to find a place where I can learn and get comfortable. More importantly, a friend has been reminding me lately, maybe, as much as I need others, this may not be the place I get what I need. Maybe I need to go so that others can learn from us. Maybe my job is not to garner much information or tricks or advice from others but to lead and advocate in a way they may not be able to. Maybe there are people out there that need support from me! It's a hard place to be in, to think that, as much support as I need, there may be others who desire a net and strong guidance more. It may be as simple as passing along information we have and they don't. It may be other's looking for a smiling face and someone to go on a play date with. It may be other's looking for a church home or are in need of prayer support in their lives. I can't guess how I might be of use to other's, but I most certainly can be available. 

So we are toeing our way into events. We are trying to be strong and putting ourselves out there. We are attempting to find that bridge between courageous and scared out of our minds to make sure that we can learn what we want and don't want and to build that network of people and ideas that will help us, help Johnny as much as possible. Hopefully along the way we can learn more about ourselves, about our kids, and about others. 

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