I'm not sure what I was afraid of, but I know one thing for sure--I didn't want to bring Lamp's power chair home. Her wonderful PT's have been telling me she's ready for a long time. And I saw it with my own eyes as I started joining her on walks during therapy. Or is it drives? We walk, she drives. Anyway, she had long since graduated from simple forward/backward/right/left buttons and was now using the joystick like a pro. She no longer bumped into walls or veered toward falling off the curb. She could easily correct herself and get to her destination without any problems. Her therapist said, She so smart, I knew she would figure this out and drive really well. But honestly, she has completely exceeded my expectations. She is doing really, really well. She's ready.
But she never pushed it. Because she knew that while Lamp was ready, I wasn't. The truth is there were still some valid issues that needed figuring out. Like a remote stop button--you know in case she's about to plow a kid over and we're across the room or about to go off the side of a curb. I need a way to stop her chair if I'm not right next to her. Then there was figuring out a lift for the car. I can't exactly pick it up and throw it in the back of the van myself. And even just knowing how to work the chair and all the controls myself. These were legitimate issues that needed addressing.... I just kept conveniently putting them off.
I remember the day Lamp was born, we were in the hospital room in Cincinnati soaking it all in...soaking her all in. Holding my sweet baby and letting the joy wash over me. I was in heaven. That very first day a geneticist came into see us. We had never met her before, but obviously she knew something about our Lamp. She was very kind and took one look at her and reassured what we already knew--that Lamp didn't have the differential diagnosis they had given us weeks before. I knew that the day they gave it to us. Then she looked at Lamps little hand and said, Oh I can see this little hand operating a power chair one day. I think that little hand will come in very useful for that. Like I said, she was very kind. I smiled at the suggestion, but quickly put that thought aside. Since her very first day on earth, the idea of a power-chair was planted in my brain. I just didn't want to hear it.
On some level yes, it was totally the whole I-have-a-kid-in-a-wheelchair thing I wasn't wanting to face. A small part of that has to do with me and embracing the reality of our and her life. But the other part--a large part--has to do with other people and how they look at, notice, process and then treat our daughter. Pushing her in a stroller provides a somewhat inconspicuous cocoon of 'normalcy.' As I learned on our walk down the block today her differences are suddenly front and center now that she's in a power chair. And at least one look from a stranger was met with subtle hostility, which shakes me to my core. As if she wasn't already vulnerable enough.
The other part of me wasn't ready for the changes a power chair would bring into our lives. It's a large, heavy machine connected with wires, gears and high tech equipment. And it's operated by a 2 year old. That thought always makes me laugh.
But on Monday the excuses ran out. Although I gave it a fair shot with I don't really know how to run the whole thing. Turns out it's not that complicated. So after therapy we loaded it up and brought it home. Seeing how it took me weeks to decide on a color, our therapist knew this was a big step for me. She's great and I appreciate her easy way of helping me through this.
But now that it's home, I really don't know what I was afraid of. She loves it. The freedom. The blessed, blessed freedom to go from one room to another and back again in less than 3 minutes... it's life changing. This beautiful baby has always been so patient with herself and with us it's nice to see that patience rewarded. She drove around Monday evening before bed (we had to wait for dad to get home to unload the chair) and come Tuesday morning she woke up and her first request was to drive her chair. And it was my absolute pleasure to say yes. Yes, baby, yes you can drive your chair. And it's not just the swift speed of travel, it's also being up on the level of her peers. Sitting next to sister by the computer and actually watching what she's doing from the same height. Then having her sister bring the mouse over to her so she can play the game too. (That sister is something else). Helping pick out her own clothes for the day while looking down in her dresser drawer. It is new and exciting and so, so good for her. Yes, a power chair does come with a new set of challenges, but it's hard not to be excited when you see the positive impact it's made in the first 2 days. It's a new normal. I don't know how it's always going to look, but so far so good.
Lesson of the day: Change can be good. Maybe, change can even be great.