It takes a village. Fightsma.org is one of the first websites I found when Asher was diagnosed. Most of the material you read is very daunting but something about the way this site communicated the need of a village really struck me. A child with SMA 1 needs the whole team, the whole village, to care adequately for his or her needs...The team will typically consist of a neurologist or physical medicine and rehabilitation specialist, a pulmonary medicine specialist and a respiratory therapist, a gastroenterologist or a nutrition specialist, physical and occupational therapists, a genetic counselor, and very importantly, a case worker or social worker must be present who can help parents navigate the almost interminable and complex rules and regulations of healthcare insurance to make sure that their child is provided with the very best care, therapy, orthotic devices, and durable medical equipment. I had many thoughts - especially since this was at the point of freak out mode - but one of my first thoughts was what about our village of friends and family? Although it is hard to not feel alone and swallowed in all of this, I know that we are not alone because we honestly have the best village of friends and family we could ask for. We feel so loved with the quick response to support us through this most difficult time. We have received meals, gifts, time, shoulders to cry on, etc. And to all our friends and family who love us so very much, we too are sad for you. We are so very sad that you are walking out this painful journey with us. It is not easy to watch anyone be hurt or suffer the way that SMA families do. Thank you for being our village.
Posted on: Mon, 21 Oct 2013 02:43:07 +0000
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