Boy with the golden curls

Reuben ready to leave for a Disneyland boys' day.

How sensitive my lovely sweet boy. I hope by giving some background here that you'll better understand where we're coming from, not that I wish to dig up and relive the past. It's more a sense of knowing where you came from to explain the emotions which I was to soon experience yesterday evening.

Yesterday after a great day enjoying two birthday parties, we had been talking about his history of reading and signing. His first expressive language was American Sign Language, that which I started to learn within days of his birth based upon the diagnosis that he was profoundly deaf. A few months later, this was revised to moderately deaf in his left ear and severely deaf in his right ear with a mixed sensorineural hearing loss. What we hadn't known then was that he would have a tracheotomy when he was 3 months old that would last until his was 3 years ago. And for Reuben, with the severe complexity of his airway, that would mean that he was unable to vocalize any sound, not a laugh nor a cry, until it was possible to cap his trach to allow air to pass through his vocalize, that which gives us the ability to vocalize. It took getting to a stage that his throat was sufficiently healed from being on a ventilator and the damage caused from scar tissue, muscle weakness and swelling (tracheomalatia and laryngeal), to allow us to block the trach with a small removable cap, thus allowing sounds to pass by.

This we started when Reuben was 2 years old via a speech therapist. At first, he could tolerate just a few seconds before becoming overly panicked and stressed, holding his breathe rather than attempting to use his healing airway to breathe. His own voice became a source of great fear. With a trach, you breathe through a tiny straw like hole in your throat. With the trach capped, you breathe through your throat via the typical airway, thus allowing air to pass by the vocal chords and create sound.

It took months to get to a stage where he could tolerate the trach cap from seconds to minutes to hours, with many frightened tears expelled throughout. And then the cap became natural to him. It also marked the first time since the few short weeks after he was born when I heard his voice, his cry, the sounds he expelled when he yawned and heartwarmingly, his laugh. Can you imagine waiting 2.5 years to hear your baby laugh again? You can just about hear his first vocal sounds since birth in the first video.

At this time, Reuben's sign language was going through an explosion of development, witnessed by this video of Reuben aged 2.5 years signing a complete song. It took a rewatch for me to notice he signed it completely, but that I had missed some of the signs due to me signing, holding Reuben and videoing at the same time.

Special to me.

6 months later with the removal of his tracheostomy he was able to speak a few words. Within weeks, he could speak and sign the alphabet as witnessed in this hilarious video of him signing symmetrically with two hands (incredible) whilst speaking the alphabet.
Reuben signing and speaking at 3

And just a few months from this date aged 4 years and 9 months, he read The Giving Tree, captured on a first read.

And now to the point. Whilst I can show Reuben all of the videos aged 3 and 4 and indeed each successive reading video we made together, he's unable to watch himself signing and signing Special to me without being inconsolable. And yesterday was no exception. Why indeed had I tried to let him watch it again knowing it may cause such great pain to him? Perhaps it was hope for the past to have been healed, to allow me to understand his feelings so that I can help him. We talked for a good while afterwards and his fears are based on looking back at his inability to speak at the time and last night he revealed, the "red" cap. I now understand that for children, counseling and going over past hurts as a means to exorcise may not help. It merely cements the hurt. I just want to understand what he's feeling so that I can help him. I cannot describe how utterly proud I am of his accomplishments in life, often holding him up on a pedestal at his incredible intellect, dry wit that he takes time to consider before emitting, peppered with slapstick humor.

What a responsibility we as parents bear for ensuring our children meet their upmost potential in life. Early on it panicked me to the extent that I spent all my time signing with Reuben, teaching him sight words, stages which I feel have been entirely skipped with Callum. Each child indeed does have their own strengths and weaknesses and academics are not Callum's. I remember those moments of racing through flash cards as if there were here with me today.

God, I love this boy so much, his intense sensitivity and calm. And on that pedestal he shall remain.