Day 3: Awareness through blogging…Down syndrome Awareness month is October!

I’m feeling a little under the weather today and wasn’t sure what to write about today.  I had a bunch of ideas running through my head as I tried to pick a topic.  Sitting here just now I was listening to Bradley laughing at the cartoon on TV.  Turns out my little guy loves to laugh at puppies.  Perfect I say, we want to get him a service dog for emotional support…(someday), we thought what a better way to open a friendship then by others seeing my son’s cool dog…  and then there is the hope that we can train a dog to lay beside him while we vent his tummy and maybe just maybe, Bradley won’t put up such a fight.  In a perfect world this would be how it would happen…in my world I think I would have to teach a dog to lay a paw over his chest to hold him still.  So there is my son, laughing every time the puppy comes on the screen…turns out I LOVE his laugh - His from the belly, perfect laugh; not even the button can get in the way of that.   

And my son has the sweetest voice.  His tongue lacks the muscle tone to form a lot of the babble sounds that will lead to talking, but he works every day to strengthen his tongue and get himself more verbal.  Because of the need for the G-Tube, his mouth is guarded as he protects his esophagus from swallowing and causing pain.  Right now he is learning that it’s really okay to swallow because there is no more pain…chewing is starting and babbling is increasing daily.  With my other two kids, I would hear their words for the first time and feel a thrill run through me at their first words, and then their words led so quickly one into another.  With Bradley though, there is no headlong rush…there is a gentle savory of each little sound that turns into a syllable that becomes something more, a word.  His first word was “Ball”.  He’s been saying that for over a year.   “Dada” soon followed and for awhile that was enough for Bradley.  Instead, his signs multiplied and we started have conversations with our hands and my mouth.  His signs are not textbook, but they are understandable, like I know that the certain way he waves his right hand at me is his valiant effort to say “I Love You” and it makes my heart warm. 

He’s since added, “Go” and “Bye-bye” sometimes throwing those together to throw off his sleep-deprived mom; saying them together as I took him out of his seat after getting home from dropping the girls at school.  I looked at him and said, “No, we just went bye-bye.” Have I mentioned that in another life I was an English teacher?  My sweet son who is always patient with me, kindly repeated his phrase and it came through to me and I realized he hasd spoken a sentence!  I was wide awake after that!  Not too long ago he gave us “Baby” and in his first real two different sounding syllables word I truly could hear his voice.  I mean angels weren’t singing “Hosanna” but whatever; Mom blinked back tears and sang a few “Hallelujahs” in her head.  His therapist even had a little mist there too, so yeah – I’m a big wimpy, wimp…but so was she, at least a little bit.  Anyway, he’s now working on “Clock” and “Block” but so you know…he’s having some trouble with the “L’s”.  You can work that out yourself.  He tries to say all the P words and a lot of the B’s…those are easier sounds.  I talk to him all the time trying to encourage him to work his muscles in his tongue…and we do exercises that I swear he loves simply so he can sink his fangs in at least once a day…and we’re getting there. 

But through all this…all this work and waiting and hoping…I don’t get “Mama” and I know it shouldn’t matter because he’ll reach for me, and he’ll hug me tight, but it’s something you realize you have been waiting to hear all along the moment you hear it for the first time.  When he woke up from his nap today  I heard him start his sing/moan to himself routine.  I picked him up, we vented, we changed a diaper, and then I picked him up.  On the way out of the room he was babbling, saying the sound “ma-ma-ma-ma”…I looked at him and said: “Are you saying mama, cause I’m mama.” 

He smiled as he looked at me then leaned in against my cheek and shoulder and said, “Mama”.  Then because he knows that in moments of great joy or great stress I need things repeated, he did it again.  And he just smiled at me, so proud of both us. 

Today was a good day!