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…
Update:
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 http://www.fsma.org/ . 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.
xoxo
Sweet Ezra 
Emily and Ethan,
We were stunned with your facebook message and commentary about Ezra and his prognosis of SMA. Please know you all are in our prayers and hope everything works out for the best for your family.
Di and Tony Hicks (Jennifer’s parents)
My Sweet Emily, Kristie shared your blog with me and I have to say that my heart is broken by the news of the health of your sweet little man Ezra. The first thing that came to mind was the power in his name Ezra David. A mighty prophet and a mighty warrior. For which your little guy truly is. All words just seem minimal as I am typing this but please know that I am praying specifically for a peace and comfort over your marriage and family. You have always been an inspiration , but now more than ever the glory of God just shines through you with every transparent word from your blog. No matter how many years or miles I will always love you Miss Emily. xoxxo Rachel (Mentley) Hampton
you may have already heard of or seen this website, but if not you should definitely check it out. such an inspiring family who lost their little girl to SMA in the spring and have now helped raise over a million dollars towards finding a cure.
http://averycan.blogspot.com/
Hi sweet mama. Majbritt was our doula in Austin & she just shared your story with those of us on FB. My heart is so heavy for your family, but undoubtedly touched and happy that I have been able to visit and “meet” you through your blog. I am keeping you and your beautiful baby boy in my thoughts. For what it is worth, I have sent out a prayer request on my blog (withlovelife.tumblr.com). All of my love and heart from here in California…
Robin
You are amazing, Emily. Thinking of you.
Emily, Ethan, Daisy and Ezra,
Our thoughts and prayers are with you. You are an amazing team and deserve all the love and support you are getting. Thanks for sharing and if there is anything at all that we can help with, let us know.
Susan, Jon, Paul, Sam & Stephen
I’m a friend of Patti Goldstein and the Goldstein Family. My thoughts and blessings are with you and Ezra. Peter Gordenstein
I am amazed by your strength Emily and Ethan.
Emily, Brooke let me know what is going on and I cannot stop thinking about you. Please know that my thoughts and prayers are with you and your family. I am going to keep up with you through your blog and through Brooke and to see if there is anything people can do to help support your family and fight this disease. I think you’re amazing.
Emily and Ethan – since I saw Ethan’s post on facebook and read your blog, I have thought of your family so much and each time, I pray for you. For strength to endure and for you to have joy in Ezra! He looks like such a darling boy.
Dear Emily…though we haven’t seen each other since you did the doola training with Bonnie (I’m Bonnie’s mom), I have thought of you often…and now, so sorry to hear about the illness that is afflicting your beautiful son…you are such a lovely woman…know that my heart is with you and your family.
Much love,
Diana
Your gratitude post brought a rush of feelings throughout my body, Emily. You are amazing. I am so happy for Ezra and Daisy to have such a mom as you. You have been on mind since reading your courageous blog. You are and never will be
alone through this, never…none of you. Your fan and friend, Suzanna
Dear Emily, I came across your blog through a Facebook friend (Melissa Levine) noting that you need some prayers. With tears in my eyes and a lump in my throat, I am sending you and your Ethan, Daisy, and Ezra all the prayers in the world. Wishing you peace and strength during this journey with your sweet boy. Randi
Dear Emily, I admire you and your family for your strength. All the best wishes from Germany and all my prayers, too! Sascha
I heard about you through my friend Suzanna and wanted to let you know that your family is in my thoughts and prayers and that as a yoga teacher, my students and I will be sending lots of healing energy your way and lots of prayers of hope and a cure!
Oh, and I was wondering if you e heard of the website Caring Bridge as its an amazing way to share updates and instant notifications along the way! My friend used it this summer when one of her four year old twin boys was having seizures which resulted in brain surgery and now he’s home and quickly recovering. I’m praying for a cure for y’all as well!
Btw, since you’re open to suggestions I was wondering if you’d done cord blood banking with your daughter and if so, if there’s any way your son could benefit from the cord blood as I’ve read about numerous metabolic diseases and various others that have been cured with cord blood…
Also, to give you some inspiration, you’ll be amazed to know of the power of sharing your story and social media, etc… My friend who’s four year old boy was having up to 30 seizures a day and was getting no where with the specialists in Dallas actually wound up finding the doctor in Arizona who performed revolutionary brain surgery which cured his seizures this summer- the connection to that doctor in Phoenix came through her previous nanny, who’s brother was a college roommate with a guy who’s family gave a bunch of money to fund research at the Children’s Hospital of Phoenix, and their phone call begging for a favor to get this sweet boy from Dallas seen by a specialist ASAP resulted in his cure! Who would’ve thought that the Nanny’s mom would remember her son’s college roommates family had this connection? Again, every single person you’ve met in your life up until now is a potential resource for a cure and a contact to some lead that can open the doors for answers! I hope to be a part of that miracle in some small way to give your little miracle a fighting chance at a healthy and long life!!
Dear Emily and Ethan, This post is so beautiful. You are truly extraordinary to share your emotional odyssey as well as Ezra’s physical one. May the furthest reaches of your network open some doors that we don’t even know exist. Lots of love, Camilla & Paul
Emily and Ethan,
I am part of the Temple Beth El Community in Augusta, and the Rabbi shared your story at our recent board meeting (with your permission). Please know you have my support and I am keeping you all in my heart. I agree that the more contacts and information sharing can lead to much possibility. It is good for all of us to be reminded about the power of gratefulness and love. Thank you for sharing your heart.
In love and peace,
Hildie Lipson
Hi Emily, I got to your blog from a FB post by Skye– I’m from Austin (was a desk girl at Yoga Yoga for a while before having my little girl) but now live in Boston. If you all make it here and need ANYTHING at all, PLEASE email me at jwkaram@gmail.com. Rides from the airport, home cooked meals, food delivery, playdate for your daughter at the aquarium or childrens museum or whatever if she comes… anything at all, we can help with, or will find someone who can. Blessings, Jessica Karam
Emily,
Mandy (Libby’s sister) shared your story and this blog with us. You are in our thoughts and prayers.
Mandy and David Golman
Hi, Emily and Ethan-
I am a member of Temple Beth El and saw the link to your blog on the newsletter. I can’t possibly imagine going through the events in your life right now, but I hope this little bit may help. I don’t know if your physician mentioned Child Development Services to you- they are the State Intermediate Education Unit responsible for, among other things, providing early intervention services to children. I work at the department of ed, not for CDS but their folks are just across the aisle from me! I’ve also worked with CDS for many years as a speech-pathologist. If you call their central referral number at 1-877-770-8883 they can hook you up with the CDS site in your area. CDS would evaluate Ezra and, if he qualifies (which it sounds to me like he would) a plan would be written that would give your family access to many supports at no cost, including tools and materials Ezra needs, people assistance at doctor’s appointments if you wish, financial assistance for traveling to doctor’s appointments if you need, and of course any therapy that he would benefit from. Please feel free to e-mail me at speech123@aol.com if I can help you out in any way.
I have connected with your sister in law. my 3 1/2 year old has SMA type 1 we live in Massachusetts and we started at children’s and switched to mass general and are so thrilled with out pulmonologist and overall care. If we can do anything,.if you want to tall or meet or just want some doctors names I have years of experience now and although diagnosis is such a used time you will get to the other side of it. Matthew is thriving. you are right about seeing a pulmo. ASAP. reach out anytime.