We often refer to our Rett kids as angels. Some will mistakenly say “silent angels,” but Susan Norwell will emphatically remind you that they have plenty to say! I am reminded of an old hymn that speaks of the “Seraph’s Song” – referring to heavenly angels singing. Since Blakely’s diagnosis in 2014, this hymn always makes me emotional (and I’m generally a tough nut to crack) – thinking of our beautiful angels, and how they sing in a way that many cannot appreciate.
Without exception, every Rett child that I have met has a certain nature – a sweet, trusting and compassionate disposition that is hard to describe, but nonetheless palpable – I think “angelic,” despite their many physical struggles. As parents (and grandparents and aunts and uncles and friends), we wish nothing more than to relieve their pain, comfort their anxiety, and maybe most of all, to hear their voice.
After a 30-year management career with The Boeing Company, I recently retired. I suppose staying retired never had much of a chance, and I’m thankful and excited to now be part of the dedicated Girl Power 2 Cure Team. Our mission is simple – support families and raise awareness, educate and enrich our kids, and support the cure-targeted research that we all believe will be successful. We sum all this up in our byline … making impact for today and tomorrow!
I absolutely believe in these words. The passion I experience from families and supporters is resolute. Research projects targeting the underlying genetics are advancing, some nearing clinical trial phases. Our Rett University programs and technologies are expanding across the world, creating impact in places we never dreamed we could reach. Our family support teams are having a measurably positive effect on quality-of-life for our angels and our families. And every day, we are here, ready to serve Rett families in whatever ways we can. Despite the daily struggles I know you all endure, these are exciting and hopeful times. I believe we have no choice but to stay focused, supportive and dedicated to this mission, and you have my commitment to do just that.
Like many of your daughters (and a few sons), Blakely loves music. Toby Mac, Mandisa, Imagine Dragons, and just about anything rap (7-year-old-appropriate) are on her playlist. We crank-up Alexa and sing and dance as often as we can. Blakely dances and laughs (her giggles are contagious) right along with us. My prayer is to hear my angel Blakely sing with us. But until that time, I want her participating in life; learning and enjoying everything that we enjoy. I want this for your family too.
Like the Seraph’s Song, won’t it be a wonderful day when the cure is delivered, and all of our angels combine their angel voices into an earthly song? And not only sing, but also share all of their thoughts, opinions and experiences … because we gave them that gift by informing the world that they are smart, capable and engaged? As Susan Norwell’s most recent blog reminds us – there is still work to do – so, let’s get busy!
Kevin (aka: Blakely’s Papa-Coach)
GP2C is the most inspiring organization I've ever encountered! Not only does it provide funding but it provides support and LOVE!