Cosmic Throne

I look at the chair and I keep thinking...

It is so ugly.

It is HUGE.

In my head I know this is selfish. I should be grateful for this monstrosity. And yet, I want our house to be pretty and this chair is.not.pretty.

It feels like a billboard that screams “I have a child with special needs!” And for so long that billboard has been tucked neatly behind cabinet doors and in tightly woven baskets. It was easily hidden. Syringes fit almost anywhere.  It used to be easier to maintain the pretty.

That has changed a bit....

You see, they don't make special needs equipment in an array of trendy colors. You can't find seafoam green or robin's egg blue chairs that have full body support and significant restraints built into them.

I think the chair looks like a cosmic throne. So big, so imposing...

Oliver with his always-awesome Occupational Therapist, Seth

One thing it does not scream is "Coastal Living".

And as we all know this isn't just about the cosmic throne, or the fact that my kitchen table had to go and is now replaced with a crayon scribbled card table. It is about me and how I'm dealing with being the mom of a child with very significant special needs.

When we moved into this house, I prayed something like this: “Thank you Lord for providing the finances for us to have this home. Like everything else in my life, use it for your work.”

Let me tell you what I really meant in my heart in reference to that prayer:

I will use this house to have parties and baby showers; to entertain.
I will use this house to allow college girls to stay for the summer for free, or have coffee and cry until 2 AM.
I will host bible studies.
I will let Young Life use it for gatherings, etc...

Basically, I'll use it for fun, attractive kind of service. I offered it with conditions.  Conditions that maintain the pretty and the comfortable. You see how it was more about me than Him?

I've been fighting hard to keep our house from looking like a special needs daycare. Or a hospital. I want pretty and I want comfortable and I want my stuff. ((I sound like a 3 year old spoiled brat, don't I?) ) I like material possessions. There I said it. I am materialistic and spoiled and, ugghhh, this transformation in my soul is so painful. Revealing my deep rooted desire to get my way.

It is ugly. My selfishness. My desire to hoard and pet things that moth and rust will destroy (Matthew 6:19).

I thought “if something this small could tear me apart, this is a wake up call!” “I have a problem with stuff.” “I like it too much.”(or as Andrew said when he read this, 'My house, my precious!')

So I'm not sure what that means, except that I acknowledge it. I confess my sin, I lay it bare before God, you and the world. Now God can get to work on this soul because true, honest, humble confession always leads to healing (James 5:16). He doesn't leave us there, on the floor in a mess, crying about a cosmic throne, and that is why I can write this so publicly.

And here is the funny part: As you might imagine, Oliver is very pleased with his throne. It is ugly and yet it is so very GOOD for him. And I give thanks for it, for the safety it provides.

This past month has had some sweetness. There have been moments of Oliver saying "happy" that make my heart want to explode, but bitter has been the main taste in my mouth.

It is emotionally draining to be discouraged so often.

I was out shopping at Marshall's the other night. In the line, there was a woman with special needs. She was there alone. It seemed like a little girl was stuck in a grown woman's body. I (along with everyone else in the line) didn't know how to interact with her. I admit it. Even I, mother of a child with special needs, just didn't know what to do or say. She was awkward and unaware and my heart broke for her.

And when I was in that line, I imagined Oliver that way, and it took my breath away. And yet this is a possible course his life will take, unless a miracle occurs.

This is a bitter pill to swallow.

A long funeral of dreams.