My nonverbal son

    Have you ever sat and just marinated in the things that you take for granted on a daily basis? The basic things in life that we view as our "necessities"? Think about what that might mean to you for a minute...

    My life prior to having my twenty-month old son was filled largely by daring decisions, last minute adventures, and frankly living in a healthy body that I took for granted by never opening my eyes to much outside my own circle. Do I regret the choices and wild behaviors I once had? Not for one second.

    The direction I'm going with this is probably a little off of the beaten path. What has lead me to this moment of writing while I listen to the sounds of my sons' ventilator and his respirations are the moments of fireworks I get to feel on the daily. A quick piece to why it is incredible for my nonverbal son to wow me with his voice, is that he is nonverbal. He's not nonverbal by choice or by accident.

    The tracheostomy tube that my son has is connected to a ventilator, causing him to not be able to speak. He is on too much ventilator support to make having a speaking valve an option. On rare occasion he will cry or make noise just enough for us to hear his voice. Biweekly we change his tracheostomy tube and we will hear his cry for mere seconds. It is one of my most favorite noises in the world. I'll never forget the times I've held in my sobs until after we've successfully completed a maintenance trach change, and I've heard my son cry during the procedure. I've kept myself composed while the sound of his voice has made me want to fall to my knees because of how infrequent it is that I get to hear it.

    How can anyone wrap their head around the sound of a twenty-month old crying being music to the mothers' ears? My son is full of expression, love and innocence. His smile tells me how curious he is, and his side eye shows me I had better look over at him to see just what he's up to. He makes the motions with his lips of when he feels pure joy, and shows me a mouth full of teeth while he silently laughs. He gestures for me to pick him up, or lets tears stream down his face when he cries. I don't hear him cry. I hear him pound his mighty little feet into the floor, or watch him barrel roll over his ventilator circuit to tell me just how upset he really is. Sometimes he turns bright red and I take multiple shots in the dark to find out why he's upset, because he can't tell or show me. Often times he's so lit up with happiness in his face, that my belly hurts from laughing so hard. I've learned to read his body language.

    My son might be nonverbal, but he has more stories and more to say than most adults I know. The past few days we've been blessed with hearing him find his voice, and push it out of his mouth (to keep it simple without going into logistics of anatomically why his trach doesn't allow much vocal noise). It is so full of intent and purpose. He laughs, and shows his toys in our faces. It makes a huge ball of hope and home and strength strike me right in the gut. His spirit feels like home. He shakes my soul when he "speaks". I remind him too many times just how beautiful his coos sound to my ears.

    Why is something so small so significant? How is it that I've lived my life without knowing on a small scale basis what gratitude really meant to me? My nonverbal son makes the moments where I question situations or circumstances, worth more than any price tag in the world. It's amazing how one person changes your perspective on life by showing you something different and beyond the "normal" you're so in tune with.

    We've picked up a new hobby in our home, by learning sign language. I am thankful for smiles, and occasional coos or cries. Changing my perspective on what really matters? I owe my nonverbal son for that.


 -Dee  Proud Owner and Founder of My Hero Calls me Mama


1 comment

  • I love his “Voice” …I love how you love each other…I love how you listen with your heart…and he responds…God bless you both on this crazy but amazing journey ♡


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