Sunday, September 13, 2009

Tracheostomy hurts the most when.....

My son's tracheostomy hurts me the most,

When I see him scared and crying on hearing other kids at his therapy class cry aloud. How can I make him realize that if not for tracheostomy his cry would sound similar too?

When he looks with interest and astonishment the babbles of smaller kids. Shouldn't he be a participant in the childish conversation rather than being a silent spectator?

When he stares at my lips when I talk to him. And, at times when he tries to imitate me by moving his lips and no sound comes out, I can't just tell how much it pains.

When I attend his speech therapy sessions. How can I try to teach him lip movement and ask him wait till decannulation for him to hear the sound?

When I'm unable to hear the music of his laughter.

Sometimes, when I'm busy in another room and come to find him crying, it makes me feel miserable.

And, it hurt me so much one particular day. I was sitting before him and talking to him. He moved his lips and no sound came. But, I could feel him wanting to talk to me. I could see pain in his eyes. I felt helpless. I hated myself for not being able to do anything about it. His expressions are more likely my imagination. It might sound too far-fetched. But, I can't help wonder what if it wasn't just my imagination. What if he really wants to talk? How can I make him understand that this is just a temporary hurdle? That it is just a matter of time that before he can talk too.


  1. Oh Sumithra, my heart breaks for you and Vignesh when I read your heartbreak. Is it possible to teach Vignesh some sign language so he can feel empowered and engaged in communication? I know it doesn't replace "sound" -- but sign language has great power for children when they know they can communicate what they want to say.

  2. Sumithra,

    Absolutely.....sometimes our trach world sucks.
    Good days, bad days...but our boys breathe, and their hearts beat and that is just beautiful.

    Can you feel that?
    That's me hugging you.

    All the love in the universe from me to you.

  3. many many many hugs
    IS there a timeline when he can have it removed?

  4. Also remeber how important receptive language is- also do you know about PECS - using pictures to communicate