She finally has it!
It has been a very difficult process and has taken much much too long but it is finally here and we have the marks on the walls and baseboards to prove it.
One of the things that has started to come up when getting new devices or services for Stella is that most of the people involved in her care take a long term approach. By this I mean they look at what they are doing in terms of its long term therapeutic value first. Don’t get me wrong this is a consideration for us when making decisions for Stella but the primary goal is quality of life. This becomes particularly difficult when dealing with vendors like Shoppers Home Health that have exclusive government contracts to provide the kind of chair that Stella requires. For them a six month delay on a guaranteed sale may not seem like a big deal but that six months could represent a signifigant portion of the time a power chair is even a useful device for Stella.
Needless to say by the time we finally got the chair we expected it finished and wrapped in a bow…. because almost $30,000 should get you some fit and finish. Right? Let’s just say that when we got there to pick it up it was in parts and by the time we got it home it was more of a torture device than the miracle of mobility we were expecting. It was around 1pm when we got home and I was determined to get the chair in the house that night. The problem is that the front door of the house is 5 feet off the ground and as of now despite technological advances wheelchairs don’t climb stairs. 6 hours and 1 trip to Home Depot later and the chair was in the house! [and we have a nice little “portable” ramp to use until we figure out funding for a proper ramp or lift] I spent the next 8 hours completely dismantling the chair and reassembling it to fit Stella and put her in a more natural driving position. I was pissed. I had a sense of accomplishment and satisfaction that I was being a “DAD” and making it happen for her but I was still super pissed. I may have sent an angry email, or two.
The next morning Mark arrived. It was Sunday. Mark is the Permobile rep. Mark clearly loves doing what he does. The technology, the clients, putting the two together to make peoples lives better. He helped me take what was now a mess of untethered wires and ductape holding elements into place and turn it into Stella’s chair. It is amazing how when we get into tight spots we tend to meet the most amazing people willing to personally sacrifice for our little lady.
It is still not “perfect” but we are where we thought we would be. Doing little tweaks, letting Stella explore and then refining until it is as useful and natural as it can be for her.