A closed door is often a symbol for a limitation, an obstruction, or a barrier. Namine’s closed bedroom door is none of those things: it is independence.

Namine’s latest expression of freedom, as befits any preadolescent, is closing her bedroom door at night. For a while now, she’s requested that I close the bedroom door part of the way. She surprised me, though, when she recently asked me to latch the door closed. She said that was what she wanted, though, and assured me that she could open the door herself in the morning. (Of course I knew that. Our apartment is much more accessible than it used to be.)

Namine’s increasing independence — and desire for it — makes me think of all the ways that she has exceeded the expectations of her doctors and how far she’s come. Join me on this trip down memory lane, won’t you?

When Namine was a baby, her crib was in our bedroom. She had a tracheostomy breathing tube, so she couldn’t be left along in case her airway needed to be suctioned. When we went for a drive, someone had to sit in the back with her for the same reason. (Trips could never be for very long either, since we had limited supply of portable oxygen.)

Namine’s growth allowed her body to withstand the surgeries her doctors couldn’t do when she was first born. She grew stronger. She had her jaw distraction and cleft palate repair, which allowed her to get rid of her tracheostomy tube. Soon after that, she was able to get rid of her g-tube, the last of her attached medical equipment.


Namine after decannulation (trache removal) in 2010.

We kept Namine’s crib in our room for a while, but we recognized that she wanted a little more independence every day. So we moved Namine into her own room. (Of course Namine already had a room, but it was filled with medical equipment. As it remained unused, we eventually got rid of it all.) To celebrate, we painted the room and decorated it to her liking.

When Namine had her trache tube, it was fastened by ties that wrapped around her neck. As a result, her hair had to be kept short. Parents of little girls the world over, I am quite sure, revel in their daughters’ beautiful long hair. We could not, out of necessity. When Namine was finally able to be rid of the trache tube for good, we were able to let her hair grow out. And she loved it! For the past two years, Namine has grown her hair long and donated it.


Namine donated her hair to Pantene Beautiful Lengths in 2016 and again in 2018.

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