Saturday, February 11, 2012

Miracles Part 2


I'm in love with Theo. He's just super special and everyone seems to know it. My children understand this and share my view of him as extra precious without displaying a hint of jealousy.

But he is so delayed. Way delayed. Take a child with Down Syndrome and throw them into low quality institutional care, add four years of neglect and near starvation and that is what you get. Major delays in all areas of development.

From the day I met Theo I've been trying to just pour love into him. I've been trying to make up for those four years of nothingness. It's slow going.

Theo is obsessed with food and water, and spends most of his time at home trying to get into the kitchen to get a fix. If someone leaves their cup too close to the edge of the counter he impulsively grabs it and dumps it directly on his face. We had to get a new refrigerator with a locking water dispenser because he had learned to stand under it and make the water run.

Theo will eat until he throws up. He has no concept of being full or satisfied when it comes to food. He attacks any food placed in front of him. If you get to close he will snag your plate, even if you are just walking by. He's fast and his arms are suprisingly long!


But on the bright side...

Theo is now walking. I thought he might never do it.

Theo is now signing "more." I thought he might never be able to communicate.

I swear that Theo is learning to wave "bye-bye" to his school bus when he comes home in the afternoon. It's still not clear to me if he's really waving or not. The ladies on the bus swear up and down that he chews on his shoe and says "EAT!" all the way home each day.

Each evening after getting his growth hormone shot and before bed I like to spend some time just cradling Theo in my arms. Holding him this way feels as sweet and nurturing as if I were nursing him. We look into each others eyes and just "be" together. Does that sound corny? It is totally corny...and wonderful!

It might be my imagination, but I think I have noticed that Theo's rapid eye movements (nystagmus) settle down when we are making intense eye contact. Silly, right?

When I'm speaking to him, I catch him watching my mouth. Every few minutes he will give me a quick head nod and sometimes make a vocalization at the same time. Sometimes a "bah!" or an "uhhhh!" He loves when I blow in his hair. Recently he has started to copy me by making kissy lips, as if he is blowing in my hair.

I often say "say mama, maaaa-maaaa." Sometimes I say it with my lips on his cheek, or on his forehead, or right on his sweet lips. I often move his little chin up and down with my hand while I say it. He allows me to do this. He trusts me.


Tonight, as I was cradling Theo, he suddenly whispered, "mama." I couldn't quite believe my ears. Was I imagining this? No need to get excited, it was just a fluke. As I was talking myself out of believing, he whispered it again.

Theo said "mama."

Thank you, God, for the privilege of being Theo's mom and witnessing these miracles in his life.

5 comments:

Leah S. said...

I cried reading this. Sitting in the chair with Theo...this is exactly what Asher and I do. Me saying or whispering "mama" all over the place. Moving his mouth. Putting his hands on my mouth while I say it. Anything to reach the language centers of his brain. Anything. Thank you for posting about Theo. I can get "mmm" out of him with great bribery (chocolate pudding) but otherwise there are no sounds. Silence. How can one little boy be so quiet. Oh but wait! He has laughter. The most incredible laughter. When Asher laughs, the whole house laughs with him.

Stephanie @ Ralphcrew said...

Thanks Leah. I just want to crawl inside his head and know what he's thinking. I want to be able to reach him, but he seems so far away. I'm trying to give back what was stolen from him.

Anna said...

What a blessing. I am so so thrilled for you. HUGE lump in my throat. I was once terrified of what our tomorrows looked like, it gets sweeter and sweeter with each day that passes doesnt it.

Lindy said...

I do the SAME thing with Levi. I use to say I was ok if Levi never talks, but the truth is I would melt if I could hear him say momma:)

Jill said...

How beautiful, Stephanie! I cried reading this too. Thanks so much for sharing! Theo's transformation is miraculous.