Monday, November 12, 2012

Boys Will Be Boys


Out of His fullness we have all received grace in place of grace already given.  John 1:16

 2:45pm. I had just completed Malachi’s breathing treatment and was about to start his afternoon feeding.  “O.K. Mal, what’s next?” I asked.  His eyes darted sideways, then back to me, and then sideways again – his way of signaling that he wanted his Dynavox, his computerized communication system.

 “You want your Dynavox?”  I asked.

 He blinked, yes.

 “O.k” I said as I went to retrieve it. 

 I returned to his room with the Dynavox in hand and connected the device to the bedside arm, then turned it on.  Next, I attached the splint with switch to his foot so that he could activate it.   The device booted up and began to scan through picture symbols one line at a time.  When the TV page appeared, Malachi clicked with his foot on the TV picture symbol and instantly, the flat screen TV mounted on his bedroom wall came on.  Then, Malachi clicked the switch until the family page appeared on the screen.  When the device scanned to a picture of his brother Joshua, Malachi clicked on the picture symbol and the computerized voice boomed, “Josh, come watch a movie with me.”  Joshua, who was in the next room, heard his “summon” and came into Malachi’s room.

 “Hey little brother!”  You want to watch a movie with me?” he said.

 Malachi looked at his brother and blinked yes.  Joshua retrieved a movie from the bulging stack of movies on Malachi’s shelf and inserted it into the DVD player.  After popping some popcorn and grabbing a Gatorade, Joshua returned to Malachi’s room and settled into the big, comfy rocking chair for the start of the movie.   Joshua pressed the play button on the remote control and the movie began.  I smiled at the sight of my two boys enjoying a movie together.  Just simple pleasures.   All was right with the world.  I retreated to the living room to watch a pre-taped program with Maurice.  Not more than ten minutes later, my perfect utopia slowly began to erode....

“STOP Malachi!”  Joshua yelled.  Heavy sigh.  “STOP!” he said. 

I got up from the couch and walked into Malachi’s room.

 “What’s going on?”  I said 

“Malachi keeps turning the TV on and off.  He’s soooo annoying!”  Joshua said.

I fought to hide my smile.  Malachi has virtually no muscle strength in his body.  He does, however, have a very strong mind.  With all of the strength he could muster in his big toe, Malachi deliberately and repeatedly turned the TV off and on to get under Joshua’s skin -and he rather enjoyed it!  I went to Malachi’s bedside. 

“Malachi, it’s not nice to turn the TV off when you asked your brother to watch a movie with you,” I said.  He stared at me with big, brown innocent eyes. 

“Do you want Joshua to watch the movie with you?”  I asked.

 Yes, he blinked. 

“Okay, well you can’t turn the TV off and on, okay?”

 Yes, he blinked, again.

 I kissed his forehead and winked at Joshua on my way back to the living room.  Moments later, I heard Joshua muttering under his breath, then stomp out of Malachi’s room and up the stairs to his own room.  I went into Malachi’s room and approached his bedside. 

“What happened buddy?”  I asked.  Malachi’s eyes darted back and forth between the Dynavox, his foot switch and me.  I frowned and stared at him as I attempted to figure out what he was trying to say. 

“Your Dynavox?” I asked

 Yes, he blinked. 

“What about it?”

 He looked down at his foot switch, then back at me.  I went to inspect the foot switch and discovered that it was unplugged!  I looked at Malachi.

 “Did Joshua unplug you?”  I asked.

 Malachi blinked yes.

 Uuuuggghhh!  “Do you want me to get him?”  I asked glaring.

 Yes, he blinked, again.   

“JOSHUAAAA!!!”  I yelled.  Joshua came downstairs – I met him at the entrance of Malachi’s bedroom.  “Why did you unplug your brother?” I asked. 

“Mom, he kept turning the TV off and on.  Why does he do that?”  an exasperated Joshua asked.  He shot a disapproving look at Malachi.   Malachi smiled back sweetly.

 “Josh, the Dynavox is the one thing he has control over and you took it away from him.  Try to be a little more patient with your brother, please.”  I said. 

“Okay” he muttered as he sheepishly slunk away.

Later that evening, Maurice and I shared a hearty laugh as we discussed the antics between the boys.  Both of us grew up in households where sibling rivalry was as natural and normal as brushing our teeth; it was a routine practice, something we did often and without thought.   Sibling rivalry taught us how to work through our problems and how to get along with one another.  It has always bothered me that the constraints of disability have robbed our boys of typical sibling interactions; I have often felt that void and struggled with finding creative ways to fill it.  But every now and then, God has shown us favor.  Out of His fullness, He gave us a gift - two brothers sparring in a most unconventional way and two parents witnessing the inconceivable.  Our hearts are ever so humbled by His love and compassion and our spirits are filled with unspeakable joy!   His grace is our peace; His grace is sufficient.  Thank you, God, for grace.

 

QUESTION OF THE DAY:  What special favor (grace) has God shown to your family?

4 comments:

Teresita said...

Dena
“JOSHUAAAA!!!” “Why did you unplug your brother?”
...is now my new favorite quote.

Per your question, I feel blessed to have a child who is almost always cheerful and easy going. I can't say enough about not having to put up with the teenage moodiness.

Dena said...

Teresita!

LOL! I know,right? I can appreciate the humor of it too - that perspective is a blessing for all of the "heaviness" of disability. Indeed you are blessed to not have to deal with a moody teenager- GRACE! I ALWAYS get caught up in that moodiness, like, what did I say or what can I do to break that "spell?" and then I remember, oh it's just hormones! Thank you for sharing and continue to be,

Divinely Inspired,
Dena :)

lolly lynette said...

This was such a touching story Dena. It reminded me of all the fights and fuses I had, and continue to have with my own disabled twin brother. It is challenging to convey to others, that although my brother has challenges, we have still found a way to disagree and even tease and frustrate each other. Thank you for sharing this family moment and reminding us of God's goodness in all things.

Dena said...

Lolly!

Thank you for sharing about the rivalries between you and your twin with disability - you just gave me confirmation that it's all good! It's funny that I've grieved that loss between my boys and then when it did happen, I was torn between letting them work it out versus "protecting" Malachi. The truth is, they don't need protection, they just need to experience the normalcies of life on their own terms!

Be Divinely Inspired,
Dena