Many angels have come into our life since the birth of our little girl: Jojo’s teacher, her bus driver, her physical therapists, speech therapists, occupational therapists, all the moms in the support group I attend. And of late, I’ve found a more intimate community. A community of families living specifically with Au-Kline Syndrome. Literally all the known cases in world have found each other. And it grows by the month. For me, it all started with a comment, here on JojoTheStrong from a family in France. Their little girl had just been diagnosed with Au-Kline syndrome. They searched Google and Jojo’s shining face appeared in the results. We’ve started writing to each other. I am elated to make this connection and to feel like I can be helpful and give support to these parents who were just beginning their emotional voyage.
And then, this family from France shared that they found an AKS support group on Facebook. The oldest diagnosed is 19, and the youngest 7 weeks. The cases vary widely, in terms of disability and health complications. Despite these differences, there are so many things in common: resilience, kindness, generosity, hope, support, acceptance, love. One beautiful little girl is two years older than Jojo. Her mom posted a video of her walking for the first time, at 6 years of age. I watched this video over and over for the better part of an hour. Whenever I’m feeling down or worried, I watch the video. It gives me so much hope.
Life is beautiful and it is hard. We all have a thing, at least one. A thing that weighs heavy, makes us question our strength, our worth, our ability to cope. And our thing can be very lonely and isolating. Maybe we hide our thing, or avoid talking about it for fear of being misunderstood or being perceived as weak or negative or strange. Before this thing with Jojo, I had other things. I tended to hide them away. And what I learned from that – it doesn’t work. The thing feels worse, it seems to grow bigger and takes over. It feels insurmountable. Life feels darker and so, so lonely. Now, my thing with Jojo, instead of hiding it away I am putting it out front and center. And connecting with as many people as I can. With these communities I’ve found, one locally in special ed and the other globally and virtually with AKS families, I don’t feel lonely at all. I feel comforted, supported. There is light and there is hope. How can there not be when we’re surrounded by angels?
Jojo The Strong 