Sunday, April 6, 2014

Beddie bye

When Maggie was outgrowing a crib we worried about how to keep her safe in her bed. She would fall out of a regular bed 10 times a night. Bed rails were not enough because they didn't cover the entire bed.  Maggie moved constantly and could maneuver herself into the strangest positions. Keeping her mattress on the floor did help because we had to work with her all night long and that would be impossible.

Enter Steve, aka Gepetto. He made her a bed that was high enough for the nurses and us to help her without bending, but secured all the way around so she would be safe. It was basically a giant box that fit a single bed mattress inside. Plus, since we were long on supplies and short on space, Steve built drawers underneath so we could easily grab whatever she needed at any given moment. The drawers stored and hid feeding bags, meds, suction and oxygen supplies, gloves and a host of other things. Some of the drawers even had clothes in them. It was perfect.

Of course Maggie easily figured out how to undo the simple locking system for the sides of the bed and did fall out once. That was an unpleasant day. She was unhurt and Steve changed the system, and added a complicated hook and eye to the top making it "Maggie proof" (though she was working on it and if she had more time she would have mastered the slide and pull method needed.) I took this picture one day as she worked steadily at it.

Maggie spent a lot of time in that bed. Obviously she slept in it every night and just about every procedure she needed was done there as well. Every diaper, trach or feeding tube change was there as were most medications. Sometimes she just hung out in bed listening to music. When she wanted out he would start slamming on the side of the bed. I was never more than few steps away and I would go in and ask her what the hell she thought she was doing and she would laugh her head off.

I miss that.

Maggie's room is on the main level of the house. It was once the breakfast room - not nook, mind you, it's a good sized room. It has a bathroom attached and opens up to the back deck and the elevator. We have to go through it 100 times a day. I don't really have the luxury of leaving her room intact and I don't want any sort of shrine. Some parents do, and that's perfectly fine. Whatever gets someone through this is the right thing to do. For me it is more painful to see it uninhabited. The equipment was the first to go and that took several weeks. In fact there's still more in the garage. Some, but not all of her clothes have gone to The Salvation Army as have some of her stuffed animals and decorations. Many of her things are in boxes to be dealt with when I'm ready and there is still more stuff in there, including the magic bed.

Or at least it was until yesterday. We gave the bed to a family with another disabled child who will make good use of it. The idea of that made both Steve and I very happy. The reality of the bed leaving was a different matter altogether. After they left with the bed we both broke down. Now there is a giant hole in the room where the bed stood. We didn't think that part through.

It's just a bed, just another thing among thousands of things that are significant. I don't need the bed to remember Maggie and her presence is strong in this house regardless of the things that change. Still, its departure is a difficult jolt of reality.

We are not sure what we will do with that room. It is a bright sunny spot that will eventually make me happy instead of sad. I know it will never be the same as it was, but it will be ok. And no matter what, I will always picture Maggie watching me from the bed.


  1. Oh, Sally. That last picture -- what a precious sprite she was --

  2. I never met Maggie but I used to read about her. I'm sorry for your loss.

  3. I love that last picture.

    I've been thinking of you lately. Lots of light to you all.


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