Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Wednesday, April 22, 2009

Suffering or living

If I see it an article or blog again, I'm going to scream. It's usually a sentence similar to this, "Johnny is 8 and suffers from Down syndrome." or "She has 3 children, one of whom suffers from Down syndrome."

Angela does NOT "suffer" from Down syndrome, any more than she suffers from her brown hair and eyes! Angela LIVES with Down syndrome. It is just something she has, just like she HAS a name. Down syndrome isn't WHO she is either. She isn't a "Down syndrome child." She's a child....just a 12 year old girl...who happens to have Down syndrome. Down syndrome doesn't have her...she has it! She LIVES, and she lives WITH IT.

What she does suffer from are other things. Health issues completely unrelated to DS that do make things difficult for her sometimes. But we all suffer from something, weather it be depression, or toe fungus, there's something that does bother us.

My son, on the other hand, DOES suffer. Paranoid schizophrenia torments him every day of his life. It keeps him awake for days on end, causing him to be more and more suspicious of everyone around him. It makes him question everything and every one, including himself. It  makes him stop eating for reasons known only to him. It makes him talk to himself, and become angry with the whole world and everyone in it. It makes him want to hurt himself so that the intrusive thoughts...the ones that torture him...will end. Last night, in the middle of the night, I received another of those calls. You know, when the phone rings at 1:00 in the morning it can't be good, so you don't want to answer it but you have to. Last nights call was to tell me that Tyler is suffering enough that he was afraid of himself so he called for help. I'm not really worried, since I know that he's safe. I've always been the one to find something good out of every bad situation. The good in this one is that there is a "three strikes" rule, so a new process has been started that will hopefully decrease some of Tyler's suffering, and get him the help he needs, weather he wants it or not! Angela can live with Down syndrome, but Tyler cannot necessarily live with Schizophrenia. It can kill him. It can destroy his very core, making him want to end his own suffering.

So, that's the difference between SUFFERING from something and LIVING with something. 


Molly C said...

Agreed!!!! I hope that one day I will be living with OCD instead of suffering from it.

Monica said...

Great post, praying for Tyler........

Courtney said...

Besides living with my daughter who has Down syndrome {;o)}, I used to work with folks who have psychiatric disabilities. Most of my clients had schizophrenia, and I agree, many of them do suffer. I am happy that Tyler is getting the help he needs and wish him and your family the best.

SunflowerMom said...

I'm so sorry that Tyler is still struggling. I will pray that a breakthru comes soon for him and he can find medication that helps him choose to live.

Michelle said...

I totally agree - people who say "Suffers from DS" should be made to suffer. That's a ridiculous statement.

So sorry to hear about Tyler's struggles. I hope he's able (and willing) to get help.