Thursday, April 28, 2011

From Loathing To Boasting

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.

Monday, April 25, 2011

What The Kids Have Been Up To Lately

Taking pictures with Daddy's favorite condiments

Asking "table for 5, please"

(even though we don't really need a seat for the 5th yet)

Displaying artwork

Enjoying the morning after a quick sleepover

(take 1)

(that's better)

Training for the LA Philharmonic

Painting Rapunzel

Sitting at the park

Swinging at the park

And liking it a lot

Visiting old friends

Enjoying dinnertime a little too much

Admiring flowers and fountains

Easter hunting

Easter posing

Easter dyeing

Easter remembering

Friday, April 8, 2011

Groanings Of An Angry Mom

Anger.  I wouldn't say that anger makes an appearance very often in my heart.  In regards to Marcus, it's usually sadness, grief, anxiousness, and worry.  But this week, I was angry.

Several more kids with Joubert Syndrome have passed away recently.  Several others have been hospitalized due to various reasons.  Not only that, but many "healthy" ones are struggling with extreme behavior and emotional issues, leaving their families grieving for them all over again.

I thought about these precious ones, their heartbroken families, and looked at Marcus and I got angry.  Angry that JS has to be in our lives, angry that my son faces challenges in virtually everything he does, angry that we have to check his organ function every year, angry that we have to teach him Braille because he could be blind one day, angry that he can't say what he wants to say, angry that he'll be teased, angry that he can't walk, angry that we have to fear losing him.  Marcus gets frustrated because he can't do simple things the way he wants to.  Sometimes he'll throw a book if  he can't turn a page fast enough.  And as much as we want to teach him to be patient and ask for help calmly, inside, I can't blame him.  In fact, I want to throw the book across the room for him, sweep him up in my arms, and cry with him for hours because I'm angry along with him, for him.

When Marcus was diagnosed, Mike & I died.  Our son died too, or at least the life that we thought our son would live.  Don't misunderstand.  We over-joyously celebrate Marcus' life today.  In fact, we probably celebrate MORE so, in light of his diagnosis.  But it doesn't change the fact that the life we thought we would have with him died.  And we mourn over it still.  This death has forever changed our lives and the way we see this world.  It's like a child realizing that Disneyland is a marketing sham and that behind the walls of Small World are rats and cobwebs, and that Mickey Mouse is actually a guy who, after taking off his suit at the end of the day, deals drugs and beats his wife.  We can never again be frivolous.  Life for us will never again be all butterflies, balloons, and lollipops.

People say that death and suffering are just a natural part of life.  But to me, there is nothing "natural" about suffering.  You can't tell a woman that it is "natural" for her to be born with ovaries and yet not be able to bear children that she longs to call her own.  It is not "natural" to raise children with lifelong physical and emotional disabilities because their biological mothers used drugs and alcohol while pregnant.  There is nothing "natural" about giving birth to a healthy, bright, sweet son whose body starts to deteriorate and then dies before he turns 3.  There is nothing "natural" about seeing your husband or your father painstakingly take each breath, lose his ability to speak or eat, become blind, and have brain aneurysms before dying.  This is just not how God created things to be!

I was surprised to find that this week, it wasn't God's kindness, His mercy, and His promises to love us that comforted my heart.  Facing my anger, I was drawn to a different aspect of His character... His wrath.   It dawned on me, through the Holy Spirit, that God is angry too.  And my anger is a teardrop compared to the raging torrents of the ocean that is God's.  Anger is as much a part of God's character as are His love and grace and it was good for me to remember that.  To me, it was my Disneyland that crumbled down.  But for the Lord, it was His Eden, His creation that once was "good".  What He had created to be beautiful has become horrifying ugly.  Of course, He is angry.  He is angry at Joubert Syndrome too.

Some people have a hard time believing that God can be simultaneously angry, good, and in control of all things.  But for some reason, He's given me faith to believe that He indeed can.  He's allowed me to believe that He didn't direct His anger at all of us who deserved it.  He loved us while still sinners and instead, unleashed the ocean of His wrath onto His perfect Son.  Jesus bore the guilt of all of our sins, and even the most horrifying ones we've heard of that I can't even dare to write on this blog, were put on Him.

Jesus bore my shame so I wouldn't have to.  He felt the full force of God's anger so I wouldn't have to.  And yet, for now, we still live in this fallen world.  I think I've finally understood the "groaning" of creation that Romans 8:20-23 talks about.  My heart used to and still longs for all I've wanted for myself in this life.  But now, I've moved a little beyond that to longing for God to restore all things from the "bondage of corruption" to "glorious liberty."  I yearn for Him to make all things new and for Him to take the seat of honor in ruling over all of creation with His glorious beauty, where there will be no more disease, no more death, no more tears, no more Joubert Syndrome, no more any syndrome.  I know that even the sweetest things of life are only tainted knock-offs of the true joys of what is to things should be.

Am I still angry?  Yes.  There is a refreshing release in being angry.  Am I hopeful?  You bet.

"...we ourselves groan within ourselves, eagerly waiting for the adoption, the redemption of our body.  For we were saved in this hope, but hope that is seen is not hope; for why does one still hope for what he sees?  But if we hope for what we do not see, we eagerly wait for it with perseverance."

Romans 8:23-25

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