When I was pregnant with Ezra, I struggled with some insomnia. Our fabulous midwife told me to try to think of one thing I was grateful for for each letter of the alphabet, as I was trying to fall asleep. It worked every time. In difficult times it can be challenging to find energy or interest in cultivating gratitude. It is so easy to get sucked into the ‘why me’ mentality. And while I can’t help but feel a little bit of that, Ethan and I are so amazed at the generosity of spirit and love that is coming our way. Every single email, blog comment, text, and voicemail helps us. We have heard from close friends, friends from long ago, relatives and folks we have never met. Every kind and supportive word makes it a little easier to get up in the morning. And if I am having trouble falling asleep, I can fill my alphabet with each of your names…


We have an appointment set for Nov. 1 with a pediatric pulmonary specialist in Portland. We have been in touch with Boston Children’s SMA clinic and they are trying to see if they can fit us in for their Nov 8th clinic. Otherwise we may have to wait until January, which is just too far off…  We have been in touch with the SMA Family Support program . They have been wonderfully informative and are sending us a packet of information, a care package of toys that parents have found easier for their babies to hold, and a flat bed car seat. As the disease progresses, it will be uncomfortable and dangerous for Ezra to ride in a standard car seat as his muscles can not hold him up. It will make it much more difficult for him to breathe. Families of SMA received a grant to buy several car seats and strollers to keep in their equipment pool. This is an invaluable resource as special strollers and car seats can be thousands of dollars. We are able to use this equipment for as long as we need, and then return it back to the program. It’s amazing that 2 weeks we didn’t know that this disease even existed… now we are completely consumed by it.

Thank you again for all your support and love. Please feel free to share this blog as far and wide as you want. From what we have learned, SMA is the #1 genetic killer of infants and toddlers. It is also the genetic disease that is closest to finding a cure. Hopefully we can all be a part of helping to make this happen.