I recently attended my 4th Apraxia Kids Conference (Formerly CASANA) this year and it was obvious to me that somethings have become clearer. I realized that apraxia isn’t something my son “has” it is now part of who I am as well. To be his best advocate; I live it, I breath it, it has redefined my priorities and shaped my life in a way I would have never imagined possible. It has forced me to look at those around me and make some tough choices, it has opened my eyes wider than I ever knew possible.
With so many 1st time parents in attendance this year it gave me an opportunity to somewhat observe on a broader scale. The look on their faces is all too familiar – lost, overwhelmed, feeling helpless and constantly fighting back tears. Sitting so intently in each session, taking notes like never before and hanging on to each word from the Speaker waiting for the ah-ha moment it all connects back to their child. It is so much no matter how many times you attend – emotionally, mentally, and physically but I still wouldn’t change a thing.
Last year in San Diego, my dear friend; fellow walk coordinator, blogger, SLP and Mommy to a child with apraxia (no, I am not making that up – she does all of that) Laura Smith and I were told by Sharon Gretz, the Founder of CASANA that “the torch had been passed to us.” I do not believe either of us knew the gravity of that statement, such an honor and yet THE biggest shoes to fill! Those words hung in my head on repeat, I tried to speak with as many people as I could, meet them for a drink, hug them when they cried, listen to their story and welcome them with open arms into our Apraxia Kids family. I wore a bracelet that she gifted me; it is engraved with, “nevertheless, she persisted.” Every time I felt unsure, I would look at it for strength and think “what would Sharon do?” I did my best to hug each family and reassure them that things will be okay. I feel it is my duty, no my privilege, it is what was done for me (still is some days) the very least I can give back is that reassurance.
The Apraxia Kids family is interesting group to say the least. We come from all walks of life, all over the country, and have children of all ages but we are all working towards one common goal, making the lives of the children and families living with apraxia easier. It may sound cliché but it is the absolute truth, we are bonded by our commitment to the mission of raising awareness and supporting each other. Truth be told many of the volunteers could walk away due to the progress our children have made. But we don’t; we persevere with unwavering support for an organization that reminded us to breath and held our hand as we walked this journey. When we started on this road we gained things that no one else could provide – someone that understood, parents walking that same scary road with a destination that is unknown, we gained our tribe.
The bonds you form at the conference and through the support group on Facebook can be your saving grace on those particularly hard days, reach out. We see you, we feel you, you are not alone on this journey. This is part of what apraxia has woven through every facet of my life. It is not just a condition filled with appointments, setbacks and frustration, it is a family. One that I am forever grateful for and cannot fathom a day without.
The volunteers, the board, the staff fight endlessly and some days it can be exhausting. But, when I am asked why do I keep fighting? I always say, I never want someone to feel how I felt when we were first diagnosed. I am certain that everyone involved would respond the same. Just know that we are here, you are not alone, we are your apraxia tribe.
