Senses

My son Caleb has cortical blindness. His brain does not process well the information captured by his eyes. How I wish he could see! He is missing so much! Yet I confess I want him to see for self-centered reasons. I want him to see me, to see his brother, to see his dad.

I am sure he knows he is loved. He can feel it in our gentle touch and the rough play of his brother. He can feel it through the thousand kisses that have left an imprint on his forehead and his cheeks. Still I wish that he could see our love for him. I wish he could see our smiles and lit-up eyes. I wish he had the sense of sight.

Caleb does not eat by mouth. I wonder what months of feeding via the unnatural route of a gastrostomy tube have done to his sense of taste. He does not seem to have developed oral aversions, yet he does not either seem pleasantly surprised by the tangy sweetness of apple sauce. “What do you think, Caleb? One thumb up, one thumb down? ¿Sabe más o menos?”

I wonder if Caleb can smell. I hope he does. I hope the calming smell of lemongrass, rosemary, and lavender soothes him when I rub his legs with the special massage oil I like so much.

Caleb cannot grasp, and his hands often seem sensitive to touch. He often withdraws them when we place something new in them. We are trying to encourage him to reach by taking his hands over to our faces and describing them for him. “This is mommy’s face, Caleb. This is mommy’s hair.” His brain sabotages him though. Would he reach for me if he could see?

Caleb can hear. I am so glad! My singing does not fall in deaf ears. Caleb can hear and he coos back. He grunts, he blows bubbles, sighs, and expresses his displeasure vocally when the annoying phlegm makes him cough. Caleb can hear and imitate the “ooh, oohs”, the “aah, aahs”, the “bloops”, and “brrs” that he taught us in the first place. We have a simple language developing day by day. We call it “Calebais.”

But Caleb cannot see... except perhaps for light. Yet, as sad as it is, it does have some advantages.

................

Every now and then it’s my turn to interpret for a family whose child will need to receive daily or weekly injections at home given by the parents themselves. It almost never fails. These appointments to teach them how tend to be chaotic and emotional. Mothers insist they cannot do it, and fathers lose their macho-man likeness and point back to mothers with a quick, “Not me. She’ll do it,” when the nurse suggests if not mom then dad.

Children sense the anxiety, see the needle, and beg, “No, mommy, no.” Mothers’ eyes fill up with tears, and so do mine.

“How fortunate that Caleb won’t see the needle and the fear on my face when he starts getting daily growth hormone shots,” I thought during one such appointment.

“All of Caleb’s senses have to work extra hard to try to process the information,” said my co-worker, Eve, as I spoke with her about these families’ misfortunes and Caleb’s advantage.  I agreed. His brain is either too busy or too idle to panic. That’s a good thing in this case.

“You know, Eve? Caleb’s most developed sense is his sense of contentment. “

.............

My son lives in the now. He calls for me, “Uuh, uuh” in the middle of the night. I come into his room and he gets quiet. I pick him up and sit him on my lap. Ah! Deep breath. Contentment on his face. He is satisfied. Mommy is here NOW. That is all that seems to matter.

I don’t think he is worrying about me putting him down again in a few minutes and going back to my room. If and when that happens, he will simply call again. He is living in the now and he is happy with his life. What a great example!

For a very brief moment, while he is in my arms, I breathe deeply and thank God for the time being. My son is in my arms. He is strong. He is healthy right now.

Keep giving me lessons, Caleb, because I forget. I get anxious. My mind starts to wander and gravitates towards the dark, the sad. Help me to enjoy the moment, Caleb. Now, now, now! It’s truly all I have. And I have you. I have your dad and Daniel, your sweet little devil of a brother. I have you all right now.

...............

My senses are not my helpers. I see too much sickness at work. I hear of violence and death. My brain betrays me and creates monsters that frighten me at night.

I need your sense of contentment, Caleb. I need to learn not to panic... Stop my brain. It thinks too much. You do have an advantage, Caleb. I hope monsters never creep into your mind.