What a crazy week this has been. We have been desperately trying to get Ezra seen by doctors as soon as possible. We want as many educated, knowledgeable eyes on him  as we can get. I’m really trying my best to stay optimistic, but I honestly do not know what new information there is to learn about our sons disease. I mean- there is SO much to learn about how to manage the effects of the disease, how to care for him and make him as comfortable as possible. But in reality- he has a terminal disease that has no cure. But we must keep searching and doing… and we need as many answers as we can get to our impossible questions. How long will our son live? Is there any chance he qualifies for a clinical trial? Will the clinical trials help him or will they just increase the time we spend going to and from doctors appointments? What will the next few months… or years be like for him? Will he experience pain? When do have to deal with all of those scary looking machines? How quickly will his condition worsen? How in the world will we live without our little boy?

Well… today we got some positive news. After a referral from our wonderful pediatrician, a bit of badgering by Ethan and a good word from a doctor friend of our amazing cousin Karen T, we got an “overbooked” spot in the SMA Clinic at Boston Children’s. On November 8th, the best of the best will meet Ezra. This feels like a huge accomplishment- and Ethan spent a lot of time and energy trying to make this happen. We were particularly impressed with Kerri at the SMA Clinic. She was incredibly responsive and went above and beyond trying to get us a spot. We are so grateful to Karen T and her friend for advocating on our behalf. Outside of our visit to Boston Children’s, Ezra will be seeing a pulmonary specialist in Portland in early November, and next week he will be assessed by the early intervention Child Development Services for in home physical therapy.

There is such an immediacy to all of this as we want him to be seen by the very best doctors we can find while he is still in pretty good health. It is honestly really hard for me to remember that this isn’t just a sprint to the finish line. Ezra is 4.5 months now and we could be managing this disease for another couple of years. The neurologist said most Type I babies live from 6 months to 2 years- maybe as long as 3 years in some cases. In my life, I have had a lot of experience with loss. My mom died from cancer after it was in remission for 10 years. She had a stroke and one week later was gone. One of my best friends from college died suddenly from a very rare heart disease and my dad died from a heart attack having no history of heart disease. All of these deaths were quick and without the opportunity for goodbyes. Ezra is different. We are aware that his death is imminent, but our job now is to somehow figure out how to enjoy his life- for he is still very much alive… laughing…talking up a storm… finding wonder at all the little things that babies are in awe of. It is a crazy way to live. We are desperate to enjoy every single moment with him. We want to burn into our brains every moment he lights up when his sister walks into a room. The way he laughs when I zerbert his belly. And how he smiles ear to ear when he hears his dad’s voice. He is a joy and amidst all of these doctor’s visits and research and our lengthy to-do and to-learn lists of how to keep him comfortable and healthy we need to remember how precious these days are and be willing to stop doing and just be present with our beautiful little ones.

I am so thankful to you all for reading my blog and for sharing it with others.  I am so amazed at how many of you have taken it upon yourselves to learn more about this disease. Here is a link to a fundraising site- for those of you who would like to contribute to the ongoing research for a cure: http://www.fsma.org/Fundraising/