One of Marcus' biggest challenges, along with his low tone, is his apraxia. Basically, he has the desire and ability to do something, but his brain is not sending the right messages to his body to enable him to follow through with the action. That's why it took him so long to learn to feed himself. He could bring toys to his mouth to play, no problem. But when he saw the food and had it in his hand, he couldn't bring it to his mouth because his brain didn't allow him to. Once he "got it", he was totally able to and now, he feeds himself fine. It's a motor planning issue.
With his speech, it's the same thing. He babbles on his own a lot, but if I ask him to say "mama" or "baba", he can't repeat what I'm asking him to say at that moment. I'm learning that speaking requires an incredibly detailed set of skills. Not only do you have to position your mouth and tongue correctly, but you have to control your airflow and the way in which you allow air to pass through your vocal chords. I know that Marcus desires badly to speak, but his brain is getting in the way!
He has been exploring his voice a lot, however. Along with the babbling, he's been into screaming. You know that scene in Dumb and Dumber where Jim Carrey shows off the most annoying sound in the world? It's that exact same sound that Marcus loves to do at home and in the car. It's cacaphonous and piercing to the ears, but I love it and it cracks me up because he screams like crazy (and gets Audrey to join him) and then laughs like crazy. It's hilarious and I think he does it on purpose because it makes me laugh so much.
Here is a picture of his scream. I wish you could hear it!
The great thing right now, is that Marcus' receptive communication is awesome. He understands everything we say to him and ask him to do. I read with him and ask him to point to what I'm talking about and he does. If he gets it wrong the first time, he corrects himself. I tell him to do something and he does it. He has also started to enjoy imitating gestures. Fortunately for him, he is able to manipulate his hands a lot better than he can his voice. So in order to allow him to communicate basic things, we are teaching him to sign and hopefully, this will unlock some much needed communication.
Lately, he's been picking up more signs fairly quickly. It thrills me when I see him learn new signs all by himself while watching his signing DVDs. He learned "milk", "game" and "hat" without my help and he is SO proud of himself when he does it on cue. When I wash him up in the bathroom, he watches himself practice his signs in the mirror and he thinks he's a stud for signing "more" and "food" and "please".
It's great to see him learn to communicate little things like that with sign. We praise God for these little encouragements! But when I fast forward a few years, I wonder if Marcus will be content to communicate this way. I can only imagine the frustration he will feel when as a young man, he will try with all his might to talk, but the kids next to him won't be able to understand what he's trying to say. I can see myself wanting so much to know what he's thinking and feeling and wondering if I'll ever be able to understand his heart completely. I can't see myself blaming him later on if he gets angry and frustrated that he can't adequately express himself. In fact, I'll probably be as angry on his behalf!
And to think that this is only ONE area where he'll have difficulty. Will he be content that he'll never be able to drive? That he won't be an all-star? Will he be okay if he won't be able to run around like his sister does? If he can't play the guitar like Daddy does? Will he be okay when he begins to lose his vision? WILL HE BE OKAY?
I want so badly to make his world "all better". As his parents, we would do anything do ensure that he'll be able to do all he wants to do in life. But if we did shield him from disappointment and suffering, we might also rob him of the chance to learn the raw truth that he is complete in Christ. That no matter what others say, or what the world says he needs, or what his heart longs for, that he has all he needs and more in the One who gave Himself completely for Him. And the Bible says that the fullness of God dwells in Christ.
Colossians 2:9-10 "in Him all the fullness of Deity dwells in bodily form, and in Him you have been made COMPLETE."
I have to trust that this is true. And our deepest prayer is that Marcus will trust that this is true. The most comforting thing is that it remains true whether we believe it or not. Dear friends, thank you for praying for Marcus' development and his health. Our greatest prayer is that all that he "lacks" in his life will drive him to the One in whom he has all things.
Can't wait to be able to sing this with him at church one day:
All of You is more than enough for all of meFor every thirst and every needYou satisfy me with Your loveAnd all I have in YouIs more than enough"Enough" - Chris Tomlin
