Broken Values

We were talking tonight about value and purpose in people with a disability and I was reminded again how important people with disabilities are to this world. Statistics are showing that in Europe, 92% of babies diagnosed with Down's Syndrome are aborted and by 2030 Denmark will have seen the last baby born with this condition. Can you imagine a world with out disabilities? What are we telling our children? What are we valuing as a people, as a society?  It seems to me that we are beginning to leave a legacy that says you have to be perfect to be here, that unless you are free of a disability you are not valued, not worthy, and not wanted.

But that is just not true.

People with disabilities are wanted. What society looks down on our heavenly Father adores. Those whom society mocked, Jesus touched.  He values them all. In Luke 18, Jesus' disciples rebuked the blind beggar, thinking Jesus had more important, better things to do than to speak with him. However, Jesus stopped and he healed that blind man. He took time out for the lowliest of the low and touched him. What Jesus own friends viewed with dismissal, Jesus lifted up.

Liam's buddy B

Liam's life is full of value. I'm not just saying that because I'm his mom, I'm saying that because I truly believe it. This world is a better place because he exists. Not only is his life valuable, he gives value to others. I have seen the joy he brings to others, all with out saying a word. Liam even has a best friend at school.
While Liam may not know he has a best friend, Liam has brought value to B's life because B values him as a best friend and B brings value to Liam's life because he loves on him unconditionally and with no pretenses. I would say that's a very worthwhile, valuable relationship right there. Both of them, full of worth, and very loved, even in their brokenness.

But most of all, God loves and values Liam very much. In the scriptures God is always on "Team Weak". In the OT God even displays his wrath against anyone taking advantage of widows or orphans by putting them to the sword. He takes it seriously that we should be caring for those less fortunate. In Psalm 82: 3,4 God presses us to defend the weak and fatherless, to maintain the rights of the poor and the oppressed, to rescue the weak and deliver them from the wicked. That sounds to me like a God who cares very much for people with special needs, doesn't it?

In Matthew 25: 34-46 Jesus speaks of the separation of the sheep and the goats. He spoke about giving something to drink to someone thirsty, food to those who hunger, clothes to the needy, etc... He explains that when we do that for the least among us we have done that for him.  It is supposed to be an honor to help those who can't help themselves. God is compassionate and we are to be as well. God created us in his own image, not for us to feel superior to one another or look down on those less fortunate. We are to lift them up, love them, feed and clothe them, and value them because each person has God given worth. We mimic God when we mimic Christ's service to others. And it is in the lowly, the weak, and the disabled that we see purpose beyond ourselves, purpose that brings us closer to Christ and shows us how valuable it is to have a world full of broken disabled people. I wouldn't want a world with out it.

Rubber neckin'

An open letter to all you rubber neckers out there:

We can see you staring. I can see you out of the corner of my eye, that place I don't want to look because I know you won't stop staring. Even though I don't give you direct eye contact I can still see what you are doing. I won't look at you because I don't want you to think that by my meeting your gaze I have approved of your irreverent stare. It is times like this that I am thankful my son is so near sighted and doesn't care about social eye contact. But you see, I don't have vision issues and I can see you staring, practically gawking. Do you think we can't see you or did no one ever teach you manners?

 If I hadn't had to throw my trash away I wouldn't have even given you a second glance, but I had to walk by you to get there and you just couldn't leave well enough alone could you. You just couldn't stop at staring. You had to go to the next level and ask a stupid question. Why? Do you have the same disorder? Then you should understand and start out by saying so and after relating to me I might be inclined to carry on a conversation with you. Does your sister, brother, uncle, friend, or cousin have a condition that looks similar? No? Then you are just asking to satiate your curiosity.

We are not out in public to answer your questions. We are out as a family, even though it's difficult, so we can experience some normalcy like everyone else. We are not here to answer your questions about what disorder my son does or doesn't have. I am all for education but not when we are at dinner. And not when you have been staring so impolitely. And not when you say, "What does he have?"  How insulting. How about a hello first? What do you mean what does he have? That is a big box of alphabet acronyms that you couldn't even translate let alone understand.

If you are so inclined to indulge in your curiosity, might I make a suggestion? In the future, when a person who is different catches your eye, they would be more interested in talking to you if you didn't stare so openly, if you didn't talk about them where they can hear and see you, and if you approached them in a manner they wouldn't find offensive. How about beginning a conversation with one of these starters?

•  A simple hello is a perfectly normal, typical, conversation starter. It goes a long way.
• What's his name?
• How is he doing?
• How old is he?
• My friend has some issues very similar to your son and I was wondering if they were the same.
• I noticed your son was having trouble, is he alright?
• Your son is adorable! I don't mean to sound rude, but I was wondering if you wouldn't mind sharing a little bit about him.
• Ask my son something yourself! He might not be able to speak back to you but you just acknowledged him as a fellow human being and that goes far in my book.

This note might sound snarky and while in a way it is, it is almost certainly an acknowledgment of the fact that I wouldn't ever mind speaking about my son and educating others about what issues he faces if I was approached in the right manner. Don't just blurt out *"What does he have?" as I'm walking by. You would never approach someone with no hair and assume they have cancer and shout out, "Whatchu got?"

* After he asked me what Liam had I asked back, "Who?" He then replied again with the exact same question. I felt like I gave him an opportunity to converse with me in an appropriate manner by giving him a second chance to rephrase or engage but all I got was the exact same question again. Liam was holding a stuffed otter and I reallllly wanted to say, "He's got an otter!" and walk away. Obviously I knew that wasn't the info he was after and I felt a tiny bit of education was in order. So I gave a very simplified response and said, "He has cerebral palsy." He immediately turned to the other guy he was with and that guy said something about so and so having that too. I waited. He didn't say anything else to me and frustrated, I just walked away.

I have got to grow thicker skin.

It happened again! I know you all might be getting tired of this but I am starting to find it ridiculous.

Liam had fallen asleep and I needed to make a quick trip into Target. I put him in the sling and carried him in that way. He woke up right away but was content to just hang out with me while I picked up a few items.

As I was standing in the aisle an older woman approached me and asked me if Liam had Down's Syndrome or if he was autistic!! Like there is a visual benchmark for autism? I am truly thinking at this point, wth? Now, I know this lady has no idea the irritation that brings when someone does that to me. I completely understand that. But I did respond with a long "Noooo, he has cerebral palsy." And then she said she was sorry.

Except her sorry wasn't for assuming he had something he didn't. She was sorry that he had disabilities.

I told her not to be sorry.

She went on to say that her niece has Down's Syndrome and that God just puts these kids on this earth because they are so special. That they just have a special place here.

I agreed with her on that and told her that Liam is special and that he shouldn't even be alive. I told her that he only weighed one pound when he was born but he's one of the sweetest people I've ever known even in the face of all of his challenges.

She started to rub Liam's head and then said again that she was really sorry.

I told her again that she doesn't need to be sorry. If God put him on this earth because he's so special and he was in a special place, what is there to be sorry for?

She agreed with me that that was definitely true and then we parted ways.

I understand that this woman was not trying to be mean and was not trying to hurt my feelings. I get that. She was a very nice woman. She has a family member with Down's and she was trying to relate to me through that disorder. I also know that you can tell that Liam has something 'wrong' with him because he can't hold his head up. I understand all of that. I appreciate that she was trying to relate to me. But the way in which she kept telling me she was sorry about Liam was really sad. And she kept saying it in front of him.

Liam isn't stupid. He understands a lot of what goes on. One day, he is going to get what these references and apologies are about. And I want him to know that he should NEVER be sorry for what he has to go through. And that he should NEVER feel sorry for being who God made him to be. He is special. He is unique. And we love him no matter what.

Do I just need to get thicker skin? It's going to be hard to do because I am sensitive about what Liam goes through and what he faces. And while in the worldly scheme of things it isn't fair what he has to face, I know that Liam is here for a reason, he does have a purpose and we are very proud of him.

It happened again.

Some of my long term readers may remember this post back in 2008. I was at a baseball game when a woman assumed Liam had Down's Syndrome. It irked me to no end and I blogged about how I felt. It brought about a few comments and got a discussion going about what I thought was an obvious difference between CP and Down's Syndrome and that people shouldn't make assumption and should apologize if they get it wrong.

While in Wal-mart today, the very lovely cashier was talking to me and commenting on how cute Liam was. She loved his shoes and was asking me where I got them. As I moved through the line and had now planted myself in front of the machine to pay, I watched her watching him. I knew something was coming, but I was prepared to answer any questions she might have. I welcome them. What I did not expect was another assumption that my son had a chromosomal disorder.

Cashier:  "He is so cute. My friend has a son that looks just like your son."

Me: Smiling.

Cashier: "He has Down's Syndrome, right?"

Me: Thinking (ARGHHH NO, Are you kidding me?!) But only saying a very flat, "No". Pause. "He has cerebral palsy."

Cashier: "Oh, he is so sweet."

I didn't bother to explain anything further and she didn't ask. I honestly wonder about these people. It's happened twice now and neither time has the person apologized for assuming a syndrome on my child. Honestly, although irritated at the labeling happening again, I am not angry over it. I am just absolutely flabbergasted.

If anything, I hope she doesn't automatically assume anymore that any child coming through with some sort of special needs, like Liam's, has Down's Syndrome.

I would have been so embarrassed had I been in her shoes.