Slowly but surely Riley is getting better. Unfortunately for Riley a cold or little infection really affect her more then others. We saw her pediatrician yesterday morning and he said Riley sounded great and whatever ear infection she had is gone! We've rescheduled her MRI for next week and sedated hearing exam for the 22nd. Hopefully we can keep these appointments this time around!
Riley was back at therapy this week and is really showing off the strength she has in her abs and legs. She had Visual Stim this morning and PT and will have ST this afternoon. It has been nice to get back in to a little routine with Riley.
One thing that has been on my mind a ton lately since receiving an email from someone who reads the blog is our optimistic approach to Riley's illness and constant positivity. I think it tends to shock most people. I know that I personally hope it doesn't come across as us being delusional about Riley's diagnosis. Trust me we live and breathe the effects of what Riley has gone through and know day to day that she has a long road ahead of her and where she'll end up is anyone's guess. But, we do know one thing for certain and that is that we can give her love, support, care and resources and then we have to let Riley show us what she can do.
I suppose I am writing this though to tell you that without a positive approach and without trying to see the good amidst the bad we'd really have a hard time getting through the days and weeks. We came up with a list of expectations that we are going to have all of the people that care for Riley review and one of the things we added was to only talk positively about Riley in front of Riley. I truly believe that this is something that can help her in the long run. I don't want Riley to ever feel like her illness is something that will hold her back from trying to do things. I don't want her to hear over and over her diagnosis and for her to have to relive the first few days of her illness. That is what we are here for to explain it over and over again to those here to help her and make sure Riley only looks forward. Sure the doctor said she'd never do anything. Well she's rolling, lifting her head, holding her head on her own for longer periods of time, smiling, expressing her feelings. Those are all somethings!
Riley has already defied the odds. When I look at where she was 7 months ago or even 2 months ago and look at her now she is a totally different child. I guess what I'm getting at is that I think that as Riley's family one of the greatest things we can do for her is be her cheerleader and constantly remind her that she can do whatever she sets out to do. Part of that is the energy that we give off when we are around her. Whether it's hiding our tears when times are tough or cheering her on during therapy as she slowly does something new I hope that we are making a difference for Riley.
Staying positive also helps our overall mental health as Riley's parents. Sure we could hypothesize about the future; and trust me we have. But, often times those conversations lead us down a very negative and sad path. So we've learned to live in the present and take each day as it comes.
When we look at the other option that was given to us in regards to Riley's diagnosis it was a devastating one. It would have meant that we would have never had the chance to bring Riley home. I can't even begin to imagine that type of heartache. So, each day that we have with Riley is a gift. It's something other families don't get. She doesn't have a terminal diagnosis and she is present in our family. For that we'll always be grateful.
Hopefully, as we continue this journey, we will continue to live by this positive philosophy. With everything that has been thrown at our family and at Miss Riley over the last year we really don't have any other option then picking up the pieces, moving on and continuing to Fight On! That is in a nutshell why we are so positive and why we continually try to look at Riley's illness with the glass half full approach. I believe that any of you as parent's would and could do the same. It's just what you do because you can and because your love for your child is deeper than any other love. It's what we owe to Riley and to her brothers. And it's why you will continue to see me write about the good (and occasionally the bad as we hit bumps in the road) and you'll constantly hear me speak positively about our Riley. To me there is no other option.
"Keep your thoughts positive because your thoughts become your words. Keep your words positive because your words become your behavior. Keep your behavior positive because your behavior becomes your habits. Keep your habits positive because your habits become your values. Keep your values positive because your values become your destiny.” Mahatma Gandhi
Dave, Megan, Logan, Mason and Courageous Riley