I am learning to appreciate words...all words..as I still hope and wait for the day words will come for my special little boy.

I miss words.  I miss sounds.  I miss the simple beauty of an "I love you" or a "mommy".  I am a little bewildered though.  How can I miss something I have never had?  Never heard?  Never held onto? 

This week my son Brady started a new round of speech therapy.  My son has a very rare chromosome duplication.  His first chromosome tip is duplicated and it has left him with a list of developmental delays...including being completely non-verbal at the age of four.  We have been trying speech therapy since he was just two years old.  Now, we have a new speech therapist.  A new facility.  A new team.  A fresh start.  And we found a really amazing practice.  A patient, kind and experienced speech therapist.  Individuals who have high expectation, but are not unrealistic.  I have learned that honesty and belief in my son are the key to any good therapist. After one session I feel I found a practice that does just that...doesn't expect my son to speak in full sentences before fall and believes in him.  Believes in his capabilities, whatever they may be.  But starting any type of program that involves speech, words and communication in general always makes me apprehensive and yes, a little sad. 

I reminded of what I am missing.  I am reminded how hard it is.  How hard something that should come so easy is.  How bad we want it.  Words.  We are one session down for Brady's new speech therapist.  I sat anxiously outside the room.  I tried to busy myself with filling out the required paperwork that is presented to parents every time you start with a new therapist.  I let myself drift back to Brady's birth story.  I tried to remember all the specialists, all the procedures all the "other information."  But mostly;y I sat and held my breath.  I waited for the door to open and the therapist tell me that "it just wasn't working" or he "wasn't interested"...but the clock clicked on.   Fifteen minutes passed.  Thirty minutes.  All of sudden the door opened.  My Brady bounded out of the room.  Big smile lighting up his face.  Sure enough, a big smile from his therapist as well.  She explained to me all that they worked on.  She was impressed with Brady's five minute attention span.  She thought he vocalized displeasure with sounds that had meaning.  She even said..."overall it was a good first session and she was so happy to be working with Brady."  I couldn't help but smile and exhale that big sigh of relief.  We made it through session one and it wasn't a disaster.  We made it through session one and they wanted him back. We made it through session one  and they were not discouraged.  We made it through session one and we wanted to come back.  Eleven more sessions to go.

Over the last several weeks, my expectations for Brady have changed a little bit.  Change does not mean giving up.  Change means reassessing and living in the moment we are in.  Brady cannot talk.  Brady can barely communicate.  But Brady does not seem too upset by this.  It is me.  It is my husband and yes, my seven year old daughter who are upset...very upset and scared and confused.  But not Brady.  He is happy.  He has a way of communicating his wants, his needs, his happiness and his displeasure.  He figures out a way.  It's not with words or signs or even special devices.  It's Brady's way.  For now, I guess, it is our way too. 

For many years, I took words for granted.  I didn't always appreciate my daughter's "I love yous".  I tuned out stories people told.  I didn't hang on every word friends and family said.  I didn't understand what a gift words are.  I didn't know that they do not always gracefully roll off one's tongue.  I didn't know they would be so precious.  I know now.  So I will keep waiting.  I will wait for that day when my son can say a word...one, two, three..it doesn't matter anymore.  But until that day comes, I will appreciate the little noises he is starting to make.  I will appreciate each and every positive session at speech therapy.  I will appreciate his smile, his laugh and the beauty he shows me in each day's little blessings.  I will wait for the words, but in the meantime I will cherish the fact that my son is slowly learning to communicate in whatever way makes him happy and gets his point across.  Sometimes a smile can say so much more than words.   For that I am grateful.

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Amy Ronayne Krause July 04, 2012 at 05:47 PM
Erin, this is so beautiful. You are amazing. It is so true that we need to pay attention to each other and appreciate all we have. Kurt & I love you guys very much. Love, Amy
Mike Ronayne July 06, 2012 at 12:09 PM
Nancy Ronayne Webster July 06, 2012 at 06:20 PM
You are a genuine wordsmith. Thank you for another blog that inspires and encourages us to pay attention to what is in front of us. Love, Nancy PS Happy Birthday. I will always remember the sheer joy of your birth day! We all felt so lucky to have you in the world. We still do.


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