Hi friends, how have you been? Moment of honesty, here. It's been painfully real around here these days. I wrote a pretty raw post back in the beginning of the summer about my youngest son, and his diagnosis of severe Apraxia of speech. The words are still ringing fresh in my ears. "Mrs. Wilson we don't believe your son will ever be able to speak." While I have come to terms with much of what this means for him, and for our family, it's an ongoing journey. Some days are better than others. So goes life, right? It's an ever-changing journey. I feel like the pendulum of emotions, is still in constant motion. It's allot to process, friends. Allot. By nature, I'm a fixer, and this isn't something that has a solution or a fix.
I did (finally) get his Tobii Dynavox Augmented Speech Communication device, approved. That was a marathon in-and-of itself, folks. My best piece of advice when navigating the roadblocks that insurance companies so frequently set before you? Be persistent and unwavering. In total, I spent 27 1/2 hours on the phone with the insurance company advocating for my son, over the course of 4 weeks. It was exhausting, but at the end of the day it was incredibly worth it. This was a huge win for him. He now has a much-deserved way to communicate (sending a virtual bear hug out the folks at Tobii Dynavox - what you do is amazing and so very appreciated.) He's progressing each day with his use of this device, and he currently has the use of about 55 commands/words . The pride that I have for his persistence and continued perseverance (especially at just 3 years old) is vast, friends. VAST. I shed more than a few happy tears the first time he used his device to say, "Hi, my name is Henry, I use this computer to talk. How's it going?" His strength leaves me in awe, each and every day.
Read on...
While my wheels are spinning, and I have several irons in the fire to help those affected by Apraxia, I had to start doing something intentionally for others who are also struggling with health challenges, immediately. Wallowing in my own sadness wasn't productive for anyone, friends. Instead, I decided to step outside of my box, and take a look at the bigger picture. This disorder is just one of many that are affecting children and families, all around the globe. Not just in my little corner of the world. We aren't alone in our quest for answers. So many of us are looking for answers to the urgent health challenges that are affecting those we love most. As I was thinking about this one day, I was reminded of one of my all-time favorite quotes:
"Life's most persistent and urgent question is, 'What are you doing for others'?" - Martin Luther King, Jr.
The next morning, I downloaded the Charity Miles app into my phone, and I started running again. I strap my little ones into the stroller and I hit the pavement at the same time, every day. It's a constant in my daily routine. A touchstone of sorts. While there aren't currently any charities to choose from via Charity Miles that benefit Apraxia specifically (I hope that CASANA becomes an option in the very near future,) there are a ton of great ones. This app makes every step that I take, count (via various sponsored partners.) And every penny raised towards finding a solution for those who are struggling and searching desperately for answers, and a solution to their health challenges, matters.
This is where I'm at today. I'm moving towards hope. I'm moving towards answers. Because anything less, is just unacceptable. I'd move mountains for this kid. Scratch that. I WILL move mountains for this kid!
