When Buster was first diagnosed with CP I scoured websites and Facebook groups, looking for support. I didn't know
what I didn't know, and that scared me. Some things I read made me feel better and some, although posted by others with good intentions, sent me into a spiral of fear, worry, sadness and numbness. Every once in a while, I let the overwhelming information about Moyamoya, CP, AFOs, IEPs, etc. get to me and I mentally check out. Which is part of why I haven't posted in a long time.
The other part is that I started teaching again, full time, and while that has been inspiring and brought more joy into my frequently chaotic life, it has been...hard. Balancing life at home and life at school challenged me in ways I didn't expect this past school year. I will be returning to teaching again this fall and I'm thrilled. I work at an amazing school with a warm community of teachers, students, staff, administrators and families. But these last nine months, I lost focus on this site and community.
But here's the important part. I was listening to Ed Mylett's recent podcast with Sam Acho (listen here), a former NFL player turned sports analyst and author, about following your purpose. The entire podcast was inspirational and motivational, but something Acho said lit me up. Acho, in his book, Change Starts with You: Following Your Fire to Heal a Broken World, says, "You are the answer to someone's prayers." I thought about that for a few days, and it brought me back to how I had been searching for something to help me when Buster was diagnosed. All of the bloggers, authors and comment posters were answers to my prayers. And here I am, writing in an effort not only to heal myself, but to help others who may find themselves in a similar circumstance. I cannot be absent from this space, because my purpose in building Parenting Rare is to offer words that may, in some small way, offer solace or understanding, when everything is orbiting in the unfamiliar. Having a child diagnosed with a rare disease or complex medical condition is blinding. The world shifts in unimaginable ways and navigating through the haze can feel so heavy.
And so, I offer an apology. For being absent, disengaged, and distracted. I often ask myself, when writing a post, "Who do I think I am, to be writing about this?" That negative thinking can bring my writing to a standstill. I clearly do not know everything; I am still learning about myself and the world around me. But I do know about the pain and joy, challenges and triumphs, the worry and relief of parenting a child with a rare disease. I hope, with all that is in me, that this site can be the answer to someone's prayers.
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