I've thought a lot about these words since attending our city's City Council meeting Tuesday night. I've tried time and time again to understand why there is a group of our neighbors opposed to the proposal for a TBI Rehab Center in our neighborhood. I've read the literature they have handed out and looked at the FB page they created. Quite honestly I think it just comes down to their perception of the term rehab and what a TBI patient is like. I've even taken a drive to the street that most of those that oppose the center live on just so I could try and see what they were complaining about. And I just don't get it.
Most of what we were hearing was fear of the unknown. Fear of the term "rehab" and fear of those that are different. One gentleman actually made a comment about having to see patients in their wheelchairs being walked around the neighborhood with their loved ones. Ummm what?
Maybe it's because I grew up knowing my Great Uncle who was wheelchair bound and present in my life and have many fond memories of the positive effect he had on our family? Maybe it's because my parents always taught us to accept people for their differences and look beyond their disabilities? Maybe it's because I have a daughter with a TBI who may grow up to be the person in the wheelchair being wheeled around the neighborhood? I still just don't get it and have decided to give up trying to.
Instead... I am looking forward to frequenting the shopping center with Riley and getting her out and about to get to "know" her neighbors. Usually, we don't bring Riley out to the store with us. Especially if it's a quick trip to pick up milk or run by the pharmacy. There are a multitude of reasons why Riley doesn't come, mainly because we don't want her exposed to germs and sickness. But, I think we'll reevaluate things after flu season and make sure to make Riley a fixture in our community so that our neighbors can be taught that their perceptions are a bit skewed when it comes to what a TBI patient looks and acts like. And maybe, just maybe, my almost 2 year old can teach her neighbors a bit of tolerance and acceptance. I mean it's worth a try?
Needless to say the council voted 3-2 to approve the building of the facility. We ended up watching the rest of the meeting from the comfort of our couch and I am so happy we did as the meeting went on and on finally ending at 11:30 PM. Remind me to never run for City Council! Now as we wait for the final approvals to be done we're crossing our fingers that the outpatient facility will offer therapy services for patients Riley's age.
Riley is doing well. Each day she is doing something new or different. She's smiling more. Moving in directions she hasn't moved before and yesterday during visual therapy she completely rolled over all by herself! All of these things are so encouraging. I just know that Riley is going to continue to amaze us this year. And in my opinion she is picking right back up where she left off in October when her IS's were diagnosed. The most encouraging news to us is that she has been seizure free for over a month now!!! (don't worry I knocked on some wood as I really don't like bragging about the lack of seizures for fear that they will return)
We're less then a week away from activation of her implant and it's a very exciting time for Miss Riley. Mason has started spending the late afternoons with Riley. He heads to her room on his own and goes through all of her toys in her basket. Sometimes he'll share with Riley and other times he'll take away the toys that are on her lap. We've even seen the" Riley smile" almost daily now.
We had to miss PT yesterday due to a fire that is in the foothills near our house. They had advised those with breathing issues to stay indoors and we just didn't feel comfortable taking Riley out in the bad air. We were back at therapy this morning, although it was a bit shorter then normal because Riley had an explosive diaper on our way to therapy. I'm sure the sight of Riley's nurse and I trying to get Riley's dress off without contaminating anything else and trying to clean up without wipes (yes, the only time I didn't have wipes in my car this would happen) was a sight to be seen! Once we made it in to therapy Riley did great and was holding her head up on her own for even longer then before!
Last weekend we were able to spend time with Uncle Brad, Aunt Kara, Molly and Luke. It is so so nice to have them closer now and Logan and Mason had a blast running around with Molly. We can't wait until Luke is able to keep up with the big kids! And one day I hope to see Miss Riley and Molly one upping the boys as they play together.
As we're hallway through January I can't help but think of how fast time is flying. I'm starting to plan the twins 2nd birthday party and it seems unreal to me that they will be 2 in a little over a month. I met with the Regional Center case manager on Monday and she was already talking IEP's and planning meetings. Really these are still 9 or so months away but I'm not ready to even think about preschool and planning and logistics right now! I'm thankful that we have some time and some very good friends that can help us through the process.... when it's time!
I hope that in some way as you read my thoughts weekly we are able to give you a realistic view in to the life of a family with a TBI family member. Sure it's not easy and there are difficult days but, our lives are so much brighter by just having Riley present in our home. Perhaps you'll start a conversation with an individual with a trach just because you know that Riley has one. Or perhaps you'll appreciate what an individual goes through more while in a wheelchair or recovering from a TBI whether it be sickness or accident related. Maybe you'll stop and help someone with a disability or perhaps you'll look them in the eye and just say "hi". To me Riley's presence in our family today is a gift. She's taught me more then I ever knew about myself and life. And I hope she can teach others. But hey that's just my perspective!
Dave, Megan, Logan, Mason and Courageous Riley!