Her room used to be my favorite place in our home.
It was clean, organized, always clutter-free. It was cheerful, colorful, calming. I made sure remained perfectly neat at all times, unlike the rest of the house.
I would often go in there toward the end of my pregnancy and sit in the glider. I would put my feet up and talk to her, already enjoying our time together in that special space that would soon be hers.
We filled her bookshelves with books and her closet with clothes. Friends and family came together to help us get the room ready and to prepare a home for her.
I couldn’t wait to make memories in there with her, to read, play, dress up, look at the maps, and enjoy time together.
Once she was here, she and I spent countless hours in that room. That’s where I nursed her, rocked her to sleep, played with her, changed her, dressed her. Everything.
Some of my favorite memories of her took place in her room, in her crib.
I discovered at some point that I could lay her down with toys and the mobile running above and I could get things done a few minutes at a time. She would laugh, smile, and play. Many of the best pictures we have of her were taken in those moments.
She loved her changing table, or perhaps simply the undivided attention that she received while on it. She would laugh and smile and move around – we called it dancing. She was pure joy.
And then Krabbe began to take over her body and everything changed.
Night after night we would try to lay her down to sleep in her crib and she refused to sleep. She became inconsolable and we finally brought her into our bed out of desperation.
She would sleep soundly as long as she was near us. Now we know that she longed for the comfort that only parents can give to their baby because she was hurting. Next to us, she felt safe.
And there she still sleeps today.
She has her half of the bed and whoever is the parent on night shift has the other. The other parent sleeps upstairs in order to actually rest, and because our queen-size bed is simply not big enough for two adults and a baby on a big pillow.
You do what you have to do.
Slowly, without realizing it, we began using her room less and less until we weren’t using it for anything meaningful anymore.
Her room is now used to store medical supplies, clothing, giraffes, and anything else that doesn’t have a home amidst the growing number of medical devices taking over our home.
The place that brought so much joy now only brings grief. It is no longer the wonderful, serene place where she and I enjoyed so many hours of loving memories.
It’s just a closet.
Even So, Joy 
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