Tuesday, September 14, 2010

Journey Into a New Stage

On Saturday, the Thayer family attended our church fall festival.  It was a beautiful day and the event was hopping with families and activities.  So many kids were running around with balloons, painted faces, and corn on the cob.  Heaven to Roa! 

We didn't bring Roa's gait trainer, as we didn't know what to expect for the festival layout.  That was a mistake!  As I said, kids were running everywhere and dancing to the band.... our Roa was NOT happy to be in his stroller, apart from things.

I have to say, this was possibly the most heart-wrenching moment of my life, aside from Roa's day of official diagnosis.  As we sat at the picnic table with Roa in his stroller, I felt utterly beaten.  Roa was laughing as two children chased each other around with a big blow-up bat.  He arched in his stroller and looked at me longingly with eyes that said, "Come on, Mom!  Let me GO!" Such joy in watching those other kids.  Such frustation in being trapped in a body that doesn't cooperate.

I cried.  Literally, broke down in front of the entire parish picnic and sobbed. 

Bryan was great.  "It's okay.  Cry!", he said.  "It is NOT fair!"  My strong husband supported me while attempting to entertain our irriated son.   He got Roa out of the stroller and helped him walk over to the children and the band stage and Roa was then, happy.

I sat there, with all the joyous family interactions around me, in pain.  But, what a perfect place to pray and curse.   Why God? Why my son? Will he know freedom of movement?  Will he know friendship?  Will he resent us when he can't join a group of kids at play?  Will he be cursed with the ability to mentally process the fact that he is so very different?  Does he already know that he can't do so many things that other kids can?

Bryan and I realize that we have hit a new stage in Rojo's journey.  He is no longer the baby who stays home with Momma and is visited by "playmates" in the form of therapists.  He isn't the wide-eyed observer in a playgroup setting, happy to just watch other kids at play. 
He is now a little boy.  Ready to run, laugh, and chase.  He wants to be a part of activities going on around him and can't without help from us.  Will he understand that we do all we can to include him?  But yet, will WE do all we can to make him involved while being able to hold in the tears, fight the pain in our hearts that make us question EVERY DAY....  Why my son?

Wednesday, September 8, 2010


Roa is doing alot more exploring of his mouth and sounds.  We are so hopeful that it will lead to full blown speech in the years to come.  This video shows just a glimpse of the sounds we are hearing.  Roa, of course, doesn't perform so well for the camera! ;)
Mealtimes and toothbrushing times are when we hear the most.  We tease him by saying, "Gross,  are you spitting out your food?!"  Which usually leads to giggles and more "talking".  We are trying to take advantage of these times to really "wake up" that mouth.

Mom and Me

Mom and Me