why we do what we do

Lee and I love leading special needs ministry for families at our church. I wrote this in our Christmas letter this year: "To say we have been blessed to serve in this way would be an understatement. The best description we can offer is this: it’s not really an effort but rather it’s like we’ve been offered a front row seat to watch (and be a part of) the work God is doing in the lives of these children and their families. To Him be the glory!"

And it's true.

A couple months ago, a Christianity Today blog post was titled Is Your Church Open to Autism? I didn't find the post until someone else linked to it on Facebook today. While it's a good post, it was the comments that really caught me.

As in, caught me like a solid punch to the gut.

It's painful to know that church is the hardest place to go for some families whose children have disabilities. No, not because of anger at God or because of any other theological differences. Church is tough because many churches aren't welcoming.

I don't think they do it on purpose. But if your church isn't proactively welcoming people with disabilities as part of your body of believers, then you're probably not welcoming to them. If your church doesn't have an answer if a parent calls the church asking what Sunday morning could look like for their child with special needs, then it's simply not a welcoming place. (The same goes for churches with no answer for what Sunday morning could look like for an adult with special needs.)

I haven't been able to find the research to back this up, but I've seen estimates that 75-90% of people with disabilities are unchurched in the US.

That's just not okay.

Consider this comment left on that blog post:

The most difficult part of having a child with Down syndrome has been at church.

Although I go to a great church, they have ignored her special needs.

When she was a toddler, I was told that "she was to be treated like everyone else."

That was folly. If she had been treated like everyone else, she would have been in nursery until she was five, because she couldn't walk!

Now that she's older, she goes to the children's ministry for part of the time, but they don't require her to do what she needs to do. I walked into one activity where she was wandering and when her younger sister tried to get her to sit down, the leader said, "She's OK." She wasn't OK, and it wasn't OK for her to be wandering.

Our AWANA program has no adaptations for her, although the workers are working with me so she can make progress.

Even though she IS at church, she really isn't included in a meaningful way. It's as if she's a mascot or a pet, not a person with a soul. I read no where in my Bible that there's a special dispensation for people who were born with 47 chromosomes in every cell. The church needs to communicate the gospel to her, too. She CAN understand.

Why don't they?

It sounds like they are working to do something for children with special needs at that church, which is sadly more than a lot of churches do. But the phrases that grabbed me were "included in a meaningful way" and "[t]he church needs to communicate the gospel to her, too." Amen to both of those.

Christ didn't shy away from people with disabilities. He didn't avoid it because it was too hard. He saw in disability the opportunity for the works of God to be displayed.

I wish all churches saw that. I wish all churches preaching the Gospel were willing to communicate it in a meaningful way to those who don't fit a traditional mold of learning or behavior.

I'm glad to be working with our church to make that happen.

And I'm praying for other churches, that none preaching the Gospel would limit to whom that Gospel can be preached.

our princess = constant entertainment

I posted a few weeks ago about our birthday adventure to see Tangled. However, that post didn't show the full style of the girl.

The Tangled dress.

The red and green striped rain boots.

The four bows in her hair because she couldn't pick just one.

And the spunky attitude.

With a little silliness on the side.

Okay, maybe a lot of silliness.

It's not in her genetic code to act normal.

But ain't she cute?

(And while I could have moved the bags and boxes and mess before I took the pictures or done some editing after the fact, I like keeping it real. This, my friends, is real at the Dinglefestival.)

Never

a

dull

moment.

best. news. ever.

(Okay, okay, I'm exaggerating. The best news ever is that God became man to demonstrate love, sacrificed Himself on the cross to defeat sin, and rose from the dead to conquer death. The best news ever is that the gift of eternal salvation, which was so costly to Christ, is free to all who treasure Him. That's the true best news ever.)

(However, the "best. news. recently" just doesn't make as good of a title, you know?)

Soooooooo, all that said...

You see this lady? The one cheesing with her little princess? (And the one who got her hair cut the next day because in the picture below it was getting long-ish and shaggy?)

The same one who wrote about being okay with being the not-so-healthy girl if it brings glory to God? (Which, by the way, is still 100% true.) The same one who has tagged her health-related blog posts "i may not have health but i have Jesus," that one?

I'm pretty sure her rheumatoid arthritis is in remission. 

(Or, depending on the definition of remission you prefer, entering remission. One definition requires the remission criteria to be met for six months before it can truly be classified as remission.)

(But let's forget about all the finer points of whether it's "in remission" or "entering remission" and just celebrate the noun, mkay? Because while my fact-loving self does think the distinction between the two is important, my heart is just screaming WOOOOOOOOOOHOOOOOOOO!!! With lots of caps and exclamation points and extra letters, of course.)

My heart is so full writing the word remission. I don't think words exist to describe the extent of this joy and praise and gratitude.

We can't definitively declare remission until my x-rays show no further bone erosions, and that's unlikely for the next set because I've only met the other clinical definitions of remission for the past month (and the comparison set of x-rays will be from a year ago). But based on the minimal level of symptoms and recent blood tests, I'm pretty sure we're there.

I knew I was doing much better. But the word remission didn't cross my mind until a sweet friend who also has RA asked me yesterday if I was in that place. If I'm honest, I had stopped hoping for it. It used to be something I prayed and hoped for and desired...but at some point in the past three and a half years it dropped out of my mind's vocabulary.

I didn't intentionally throw the word in the garbage, but it was gone until my friend brought it up.

Remission. How sweet it is to have that word back. A word and a hope I didn't know I had lost.

The verses that I've clung to in the midst of all this have been the words of Hananiah, Azariah, and Mishael in Daniel 3: "If we are thrown into the blazing furnace, the God we serve is able to deliver us from it, and he will deliver us from Your Majesty’s hand. But even if he does not, we want you to know, Your Majesty, that we will not serve your gods or worship the image of gold you have set up.” In other words, I haven't doubted that God could heal me entirely, but I also haven't doubted His sovereignty and lordship if He chooses not to do so. But, to be honest, I've been chilling in the furnace so long that I set up camp there and stopped looking for a door out.

So what's behind that door labeled remission?

I'll still take my oral DMARD (plaquenil) and have my eyes checked regularly because it can have ocular side effects. I'll still get my IVs of Remicade every eight weeks and have my liver enzymes checked regularly (though that's not the one that wreaked havoc on my liver six months ago). I'll keep eating a diet low in processed foods and artificial ingredients, and I'll keep aiming for 8-10 hours of sleep each night. And I'll continue to work out three or more times a week. It's been a combination of those things that has gotten me to this point, and because no cure has been found for RA, remission doesn't mean I can dismiss any of those vital parts of getting to this healthy place.

But it does mean that, other than managing the meds, I don't think about having RA. I do have a few joints that will probably always click and creak a little due to bone damage I've already sustained, but 90% of the time or more I don't hurt at all.

And I've stopped wincing in anticipation of the pain coming back. I'm just living.

In remission.

LORD my God, I called to you for help,
   and you healed me. 

You turned my wailing into dancing;
   you removed my sackcloth and clothed me with joy,
that my heart may sing your praises and not be silent.
   LORD my God, I will praise you forever. 

Psalm 30:2, 11-12

alien encounters

We love Mr. and Mrs. Potato Head around here. (Except when a bare human foot meets a plastic nose left on the ground, resulting in broken skin. True story. Still limping.) Usually we play with the pieces in conventional ways.

But, if you know our girl at all, you know that she loves the unconventional too. So when she tells me that the dog is an alien, it doesn't surprise me.

Yes, that is a Mrs. Potato Head (Dr. Potato Head?) stethoscope upside down on his head.

She was so proud. And he was such a good sport about it.

And I guess it must have looked like fun to her too!

I love, love, love her imagination!

shock value: high. truth level: sadly high too.

My all-time most popular post was the one I didn't want to write, the one about appalling abortion statistics in NYC. I won't rehash it all here because you can click through the link, but this caught my eye, featured here yesterday.

It's definitely jarring. And shocking.

But if you read my other post, you also know that it's true. In 2009, for every two children born to black mothers in 2009, three were aborted in NYC, where this billboard is. That means that no matter what dangers black babies born in NYC in 2009 will face in their lifetimes, they will have already beaten the odds just by being born.

When it comes to billboards like this one, it takes me a while to process and digest before I know how I feel about it. I agree that the facts in NYC need to be known. I just don't know what the best outlet and messaging should be to make them known in a way that changes hearts and actions. To make them known in a way that saves the lives of babies conceived in 2011 and beyond.

This might be the right way to draw attention to the issue. Or it might not be. I'm just not sure.

What do you think?