Sunday, January 6, 2013

What Having a Child with Down Syndrome Has Taught Me About Following Christ

Thank God the Christmas season is almost over. I nearly died. Mae, Charlotte, Paul and Scott were hit with the flu. I am not a good nurse for very long. While I don't think I should be exempt from suffering, ever, I do get rather irritated with God at not making me better at it. Near the end of this ordeal I began to come unglued and have those, "EVERYTHING IS TERRIBLE, SO WHY DO I EVEN TRY?!" thoughts. And boy did I have some wonderful focal points this time around.

You see, Mariana isn't talking. What I mean is, I have been assured and reassured that she has all the tools to talk. She says, "Mama", she can sign "milk", "please" and "eat". But she gets mad when I ask her to sign, especially where food is involved. And since her weight has been a problem my resolve has also been a problem. Kid gotta eat. She also happens to be stubborn.

The other thing that was disturbing me is that even during play she didn't seem to understand how to copy me. For example, when the others were babies I would go, "Ah!" and they would go, "Ah!" and we'd copy each other as a game. Mae wasn't getting the game. Even when I included the other kids. She's just smile and think we were being very funny.

The developmental specialist, Mrs. J., came on Wednesday. When I told her about what was bothering me she reminded me that I have to draw the line with Mariana. I MUST require her to make requests, so rather than put it around food, do it for play. Make her sign "more" if she wants me to repeat an action. Have her show me "please" and "all done". Force the issue. Repeat, repeat, repeat. Because her lack of doing what she must do is a combination of slow cognition and stubbornness. She needs more repetition than my other babies and she IS slower to understand. And then she handed me a bitter pill and told me to swallow it.

So, what does this have to do with following Christ? Well, take a look at the world around us. We hate discipline and we love achievement. We want to have all the food we want, but we don't want to get sick or fat or feel crummy. We want to drink all the coffee we want, but we don't want to have sleepless nights.We want to have all the sex we want, but we don't want all the babies, possible diseases (from multiple partners) or emotional baggage that comes with it. As Mariana's mom, I wanted the achievement with as little work as possible. Clearly I suffer from the being a human.

But there was a bigger issue I noticed in myself as reflected by my meeting with Mrs. J. I look at the violent, sexualized, sensually driven society, and my response is to circle the wagons on my own family. I find myself turning in instead of out, of hiding my views and beliefs instead of engaging (respectfully) in philosophical arguments. I don't want the headache or judgement or frustration to be in my life, so I ignore those who make statements that fly in the face of my dearly held, well thought-out beliefs. After hearing Mrs. J. tell me, "Force the issue, Repeat, repeat, repeat. Be resourceful. If one circumstance is bad timing, then cultivate good timing. You can not stop working because one day she will get it.", I realized that this is true with my community. I have to stand up and say that it is a bad idea to be more permissive. That a permissive culture is not the same as a righteous culture. I have to stand up and say that God is my God, not wealth, political party or gender. I have to stop misconstruing permissiveness as compassion, something our society does all the time.

I'm not certain if my blog is the place I'll be forcing the issues. Maybe it will, maybe it will continue to be the place where I just talk about what it is like to have a child with Down syndrome. (There is that timing issue.) I know that I will behave differently in my public life. Mariana may not ever do certain things. I will still have to try to teach her. I may feel like banging my head against the wall, but I will still have to persevere. Just as I must continue to teach Mae with love and resolve, so I must stand for Christ. Perhaps it will be just the thing that allows me to hear those glorious words, "Well done, my good and faithful servant."

1 comment:

  1. Keep fighting the good fight, Barbara. I will come an leave comments to encourage you from here in the snowy state of CT! Thanks for the comments on my blog. Nice to meet a fellow Catholic mom of a little angel with Ds.