I Didn't Know If He'd Ever Wake Up

I just listened to an NPR interview about a little girl who was institutionalized in the 1950s at the age of 21 months.

She had the same genetic condition that my baby Tulsi has.

The parents of the 21 month old little girl were aggressively told by doctors that the best thing they could do was to send her away to be institutionalized.

This was the standard in the 1950s.

She was sent to Willowbrook State School which later became infamous for the mistreatment of developmentally disabled people.

When this woman was no longer institutionalized she was switched to residential care. But she was never cared for by her own family.

Not because they didn’t want to care for her, but because that was how society functioned in such situations at the time.

But here we are today in the 2020s and I get to take care of my Tulsi. He’s already set up with in-home therapy provided to us (& any qualifying individual) by the state.

The neurosurgery he had at 9 weeks old (and barely made it through but DID make it through) has made it so that his brain is able to grow properly. Without that surgery, that wouldn’t have been the case.

I’m feeling very fortunate.

I get to be his mother. I get to take care of him. I get to watch him grow and find out who he is.

I remember when he was in the pediatric ICU after his surgery because things didn’t go right, he was not waking up and it had been 3 days.

I went home one evening to see Vina & Aja (my other 2 children), and I put some clothes in the laundry.

I didn’t know if he was going to wake up or not. I didn’t know if I’d get to see him grow up. But there I was, doing laundry.

I saw a shadow in the hall and momentarily imagined it was Tulsi as a 4 year old playing in the hall.

In my imagination, he was being wild and not doing what I say & I was feeling frustration.

I thought, “I want that so bad. I want him to be 4 years old and happy and playing and not listening to me, being wild, and I want to just feel frustrated that he isn’t listening. I just want to get to have that kind of mundane moment with him.”

My littlest sweetheart.

Sarva