Hear My Voice

My sheep hear my voice;

 I know them, and they follow me.  John 10:27

I have spent a lot of time grieving the fact that Malachi is unable to speak a single word; a lot of hours in therapy processing and contemplating what he thinks and feels but is unable to say.  As a mother, it’s been agonizingly painful wondering if Malachi is angry, frustrated or confused by thoughts and feelings he cannot express.  I yearn to know if that is his reality because the mother in me wants to soothe what ails my child; I want to offer him comfort so that he can make sense of his circumstances.   The mother in me has not only been pained about his inability to verbalize his thoughts and feelings, but also curious about what his voice would sound like if he could speak.   And I cried out to God and told Him of my concerns and gave Him the burden of my pain....

The pain of the past cannot compare to the joy of the present!  Over the last two months, Malachi’s communication has taken off in a very profound way.  While he has always had access to the pre-programmed words and phrases in his Dynavox (computerized laptop communication device), Malachi is growing leaps and bounds in his communication skills.  He demonstrates intentionality about what he wants to communicate and he doesn't allow the Dynavox or anything or anyone for that matter, to limit or restrict his communication; Malachi will piece together words and phrases to convey what he wants and needs.  Before our very eyes, we are watching him unlock the world and it is a beautiful thing to witness.  Malachi has found his voice; he is master of his universe!  He continues to be an example of how to live in spite of his limitations.

I still wonder what Malachi feels about his limitations, but I know in time that Malachi will express whatever feelings he wants to share.  And the ache that I once harbored is no longer an extension of me, it’s been replaced with the joy of watching Malachi discover a whole new world.   Although the Dynavox projects a computerized, mechanical voice, it is Malachi’s voice that I hear speaking with clarity, authority and intention.  I know Malachi’s voice without having ever heard him utter an audible syllable; we are connected spirit-to-spirit; he speaks from his heart to mine and I feel him.  I liken our connection to my relationship with God; I have never seen His face nor heard His actual voice, but my heart knows the distinct sound of His voice because spirit-to-spirit, we are connected.  His Holy Spirit dwells in me and I feel the unconditional love of His son, Jesus, upon me.  I know Malachi’s voice in the same way that I know God’s voice and the love of God.

Yesterday, Malachi called me to his room on his Dynavox, “Mom! Mom!  Mommy!” I entered his room and approached his bedside. 

“Yes, Malachi. I’m here.  What is it, baby?” I asked

“Mom, give me kisses, please.” He said

I smiled a broad grin and reached down to plant a ton of juicy kisses on Malachi’s cheeks, forehead and chin.

“Okay!” he said

And I looked at him and smirked.  Typical teenager.

http://www.youtube.com/watch?v=rIozJL2APX4

Question of the Day:  What cues or triggers are you aware of that signal to you with certainty that it’s God’s voice that you are hearing?

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?