In spring 2010 when we had a medical review of Rex's referral information, the doctor told us that Rex might be "the proverbial vegetable." Not responsive, not mobile, not interactive. And as we landed in Yerevan to meet Rex several months later, I held Craig's hand and said, "What if he really is a vegetable?" and Craig answered, "Then he will be our vegetable."
Rex has turned out to be anything but what was predicted for him. He's a strong, lively, interactive, opinionated, funny elementary schooler now. He learned to walk when we were told he might not. In fact, he runs, jumps, climbs and can ride a bike with training wheels. He is no longer nonverbal as was predicted for him, but speaks around 30 words now, whether correctly or in approximation. He repeats whatever he can, fighting apraxia of speech every single day. He combines two words into sentences whenever possible. Rex understands everything that is said to him and answers at a minimum with yes or no. Rex also has become so much better at using nonverbal communication, such as gestures, facial expressions, and signs in combination with expressive language. He thinks pointing is magical. His desire to communicate is intense, despite the many obstacles he faces.
Fine motor and self-help skills are still a struggle for Rex, but he can complete interlocking puzzles, he can undress independently, and he can dress with some assistance. He needs few prompts to follow through with a bathroom routine and is trip trained. He loves public restrooms and actually initiates using them by signing potty. He can drink from a water bottle and blow bubbles which is not an easy feat for a cleft-affected kiddo.
Most importantly Rex went from an angry, lonely, aggressive, isolated toddler to a fun-loving, affectionate, sociable elementary schooler. He calls me Mama and daddy is Gagga with a finger pointing at his main man to make sure we understand him correctly. Ella is Eh, Emilia is Eee-yah, and his friend Harry at school is Ha-Ha. He asks for Ha-Ha on weekends because he wants to play. Rex gives the sweetest kisses and snuggles up to us on the couch or in bed. Rex loves to play outdoors and get dirty with sticks and mud and rocks. He loves hikes and to race his tricycle down the street to where we can hardly keep up. We can't drive past a playground without Rex signing, "Play." He opens the refrigerator to get out salami and cream cheese to show us exactly what kind of sandwich he wants us to make for him. He tells us yes and no with complete casualness and as a matter of course - as if it's not been just a year since he acquired this skill. He gently feeds the animals when we visit our local farmer. Every single person who has taken the time to get to know Rex loves him and his personality.
There are challenges for and with Rex nearly every single day. There are tears and screams and falls and broken objects and scratches and frustrations and sensory avoidance or sensory seeking. There are obstacles ahead for him and for us that we may not even know yet. And that's okay. We're together and we will keep walking the road less traveled.
Rex, words fail me to tell you what you mean to your daddy and me.
You are our perfect, precious son. You are uniquely human.
The purity of your love and your profound teaching are a great gift
to our whole family.
to our whole family.

Beautiful and wonderful and fantastic and amazing!
ReplyDeleteSuch a beautiful tribute. Happy Together Forever Day!
ReplyDeleteJust shows what love does!
ReplyDeleteWhat a precious gift you have in your sweet boy! It's beautiful to see him blossom!
ReplyDelete