uncomfortable beauty

My favorite sermon on disability and parenting is by Greg Lucas. His son has profound autism. We share a similar theology and world view. And so, I connect deeply to Greg's raw honesty and one line in particular has played intermittently in my mind over the years.

There is nothing comfortable about disability.

The truth of that simple statement resonates in my heart frequently as we bump against Trevor's particular color of uncomfortable. I'm speaking primary about his intellectual disability, though his medical needs also add complex and messy layers to life.

There is nothing comfortable about Trevor's disability and education.

There is nothing comfortable about Trevor's disability and attempting to maintain a social life.

There is nothing comfortable about Trevor's disability and trying to help him build friendships.

There is nothing comfortable about Trevor's disability and parenting his siblings or building our marriage. 

There is nothing comfortable about Trevor's disability and what should be simply day-by-day life.

And there is certainly nothing comfortable about Trevor's disability and our walk of faith. 

Some time ago, of his own choice, Trevor decided he loves Jesus.

Then, a few months later, after watching a SuperBook episode involving baptism, he began expressing and interest to do the same.

Yesterday, in spite of Jonathan and my own sense of discomfort...

Our uncomfortable thoughts included...

"Does he really understand?"
"What if he has a seizure while he's out there?"
"What if he freaks out because the water is too cold or he feels something slimy and has a complete meltdown and we need to carry him away in the middle of this thing?"
"What if a seizure steals this memory from him and it's like it never happened for him?" 

And all the uncomfortable "what-ifs" that flood the hearts and minds of parents who love a child with profound disability, on any number of stretching occasions. Yesterday, in spite of our discomfort, as Toby put it...

My eyes tears up watching him get baptized.


Kenneth Lilly said...

As usual I find something you have written or Facebooked about that resonates at the perfect time for me, addressing something that is on my mind regarding Bennett. He has not been baptised. I struggle, have struggled, with Faith for a while.

I think that the best thing to come from all of this relative to that is now understanding that this will never change, and that its OK. I was taking a position of "If I am going to struggle with a belief in God, then I choose to have NO relationship...it's either all or nothing." The reality is that most people, even those most devout, have their doubts, lose their way, get lost, and that's part of not just a relationship with Him, but with EVERYONE.

See? I can be learned stuff.

So now I wonder how to introduce Bennett to this, since his ID is hard to map. And I don't know how to go about a baptism for him...particularly since I currently do not belong to a church. One problem at a time I suppose. My point (yeah, there is one...) is that this post gives me more courage than I had to travel more aggressively down the road, because yeah, it's not comfortable to engage the process because of ALL of the above and more.

But so many things need to be done, should be done, in challenge to it.

Thanks for sharing...

Danielle said...

My favorite Scripture is Mark 9:24, "Lord, I believe; help thou mine unbelief!"

Of course, faith is such a personal journey. I do believe being in a church family is crucial. Desperately hard for families like ours and I don't think that's given enough respect very often, but crucial. I hope you find a church that is inclusive and loving for you and your family.

We used a book called Joey's Baptism with Trevy and that really helped him. Of course, there is a part of our hearts that perseverates on the idea of knowing that it's impossible to nail down what he is really thinking or understands. Honestly, it was as much about our faith as his!

Anyway...I'm glad you found some food for thought. <3