Maggie is not an off the rack girl. Things designed for the general public are generally not for her. Her wheelchair is customized, and our van is customized. Our house is not, but it has been adapted as much as possible. It is crowded, and making things fit is a constant struggle, especially because as she gets bigger, her equipment also grows. We routinely rearrange things, pushing chairs or table aside, just to move through a room.
The house is tall and narrow, exactly what you do not want when you have a wheelchair user. It is an ongoing challenge to make things work to accommodate her needs and her equipment. We have added a deck outside and a lift to get her to the first floor of the house. The only bathroom downstairs was remodeled to add a shower so we do not have to carry her upstairs. The access to that bathroom was changed around so we could get into it from her bedroom, which used to be the breakfast room.
Changing the function of a room is easy enough, but there are additional considerations. Taking away the breakfast room had a ripple effect. We made full use of that room as a catchall and family area. That is gone; now the entire downstairs has become the catchall. We eat all our meals in what is (or was) the formal dining room. However, since that doubles as my office our ability to utilize the table for dining is … infrequent, at best.
Maggie bedroom is the only direct access to the back deck so it functions as a pass through for everyone. Further, because it was designed as a breakfast room, her bedroom is not very large. Adding the shower in the bathroom ate up even more space in her room. None of those issues standing alone presents insurmountable challenges, but we reach critical mass when you combine those with the lack of any closet in her room.
No closet in a teenage girl’s bedroom!?! Imagine that for a minute. Nowhere to put her stuff. Nowhere to remove the equipment she doesn’t use every day. Nowhere to hide the machines that keep her fed, breathing, medicated and measured. Everyone can see the ceiling lift system, oxygen tank, pulse oximeter, nebulizer, feeding pump, suction machine and the machine that provides the mist while she sleeps. (I just realized I don’t know what that’s called). This little room looks like a hospital room. And there is nothing we can do about that.
The best part of her room is her bed. It was custom built for her and for this house by Steve. It is great and the fact that dad made it is cool. Part of Maggie’s disability, personality and vitality is her almost constant movement; this girl is in motion all the time. The movements are not always controlled and keeping her safe from falling is a challenge. The bed has high rails without looking like a crib, and it is high enough off the ground that the nurses (and me) are not constantly bending over to tend to her needs. Best of all there are drawers beneath it to store tons of medical supplies, tubes, etc. This maximizes the space and keeps it from looking too institutional.
Maggie loves this bed. She can move all she wants and toss things over the side with reckless abandon, and she does, regularly. This bed is what makes Maggie’s room MAGGIE’s room and not a converted breakfast room/pass through. This is what makes it a custom space.
Also.....Thanks for all the inquiries yesterday. Maggie and I continue to fight off whatever this bug is. The doctors changed her antibiotic, so hopefully she won't get any worse.