Since he was 5 or 6 months old, Marcus has received multiple types of therapy. We are ever so thankful for all the people who have come into our lives to help with Marcus’ development. Because of these services, we’ve had things in our home that I never thought we’d have, and some that I never even knew existed. We’ve had 3 different types of walkers, ankle/foot orthotics, benches, parallel bars, oral-motor tools to help with his speech, brushes for sensory integration, scooter boards and balls and bolsters for vestibular and proprioceptive stimulation, the list goes on and on. To me, all of these things have symbolized growth, progress, and development.
But there is one thing in our home I loathe. It symbolizes decline, reversal, and greater suffering.
Many of don’t even know what this is. I wish I didn’t either. It’s a brailler. Marcus’ retinitis pigmentosa, which some people with Joubert Syndrome have, is a degenerative vision condition. Our doctor told us that Marcus will lose his vision, although at what pace and to what degree we are unsure. Because of this diagnosis, we have pushed for vision services through his school (albeit reluctantly), so that someone can teach him braille in preparation for this vision loss. Thus, this ugly, heavy, evil contraption in our home.
Don’t be fooled. Marcus is smiling in this picture, but he doesn’t like the brailler either. His vision teacher is the only person that ever tells us that Marcus is unmotivated or uncooperative. He hates practicing it because it’s hard and very irrelevant for him right now. He probably thinks to himself, “Why in the world do I have to press these heavy buttons just to make tiny little dots on a piece of paper? What is the point of all this?”
I was going to devote this entire post to how much I abhor the brailler until I read this post by a father suffering way more than me, taking care of his daughter who has been battling cancer. Regarding what kind of future he is afraid of, he says:
The concern that lurks on the horizon for me is that comfort would return…Yes, I want this to be over – I want normal. Yes, I desire something that is not constant. Yes, I would love to look at my daughter with hair and have friends over, and not go to clinic and a million other things we used to have.
Normal is not what has caused us to love Jesus deeply. Comfy couches, well maintained cars, juicy burgers, and health are not the ingredients for perseverance. Predictable and visible are not what comprises HOPE and FAITH. So, while I desire this to be over and have a return to life as we once knew it – with a far greater degree of purpose and intent I don’t want it over. I look on the horizon and I see that the removal of trial and suffering brings with it the potential for comfort and that scares me. I want to, as Paul says, “know you in your suffering.”
Maybe you too echo with me this concern: “Lord, don’t remove affliction simply because it is hard, give me a reprieve that I might catch my breath before I go deeper into knowing YOU!”
My heart stirred as I read his words and realized that there is a sliver of my heart that feels the same way. I would do anything to find a cure for Marcus, a magic potion that would take away all of his challenges. But would I take away the hardship that has turned out to be so precious and sweet to my soul? No.
Mike and I often wonder what we would be like if Marcus were completely healthy. And considering how prideful we still are now, we don’t even want to “go there”, imagining how self-sufficient and even more arrogant we’d be. Although we ache daily for our son, seeing him face so many difficulties and more to potentially come in the future, we are grateful that the Lord has gently and lovingly led us to the valley. We see our Savior a little clearer than we would if perched on the peaks.
My prayer is that instead of loathing the brailler and everything it symbolizes, I can boast in it. To have the attitude of Paul who recalled,
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. (2 Corinthians 12:9)
Rather than wanting to spit on it, smash it to pieces, and drop it from a 10-story window, perhaps I should give it the place of honor in my home, displaying it as one of my treasured possessions. After all, it symbolizes God’s grace in my weakness and His desire to reveal even more of His love to us.