Over the past week or so, we have gotten a ton of  information from the Families of SMA organization- including an incredibly helpful box of  toys and products for babies with SMA Type I*.  We’ve scheduled doctors appointments and are all set for our PT assessment. We’ve researched and read articles. We’ve taken care of business and somehow we are able to move past the horror of this diagnosis and allow our lives to settle into a new unsettled norm. We can not feel the finality and pain of this reality every hour of the day or we would not be able to function. So most of the time, life resumes some sort of bizarre normalcy…

But sometimes, after Daisy has gone to sleep, Ethan and I allow ourselves moments of connection where we gaze at our little boy and feel the deep down, to the core of our beings pain that this disease is causing. Ezra is not in pain- which we are enormously grateful for. The pain is felt by those who love this little boy, by those who have also battled this disease, and by those who understand the powerful love between a parent and a child and how irreplaceable that love is. In those moments of connection we allow ourselves to look forward and try to picture our family without Ezra’s dimpled smile… and it’s too much to bear. God- I love this little boy so much and I just can not wrap my mind around the fact that we will not get to see him grow up.

Last night, as I was nursing him to sleep, I desperately wanted to freeze that moment. His little hand was drifting up and down my hand, his long eyelashes resting on his cheeks as he relaxed his body and became completely limp in my arms. I want to bottle up the smell of his little feet in the morning when I take them out of his footed pajamas and bring them to my nose to make him laugh. I want to capture the awe and joy that comes over his face when he sees Daisy come into a room and hears her singing his name. And so I will continue to file away these moments in my memory and know that at some point in the future, they will bring me great comfort to recall.

We continue to be blown away by the thoughtfulness and outpouring of support by family, friends and people we have never met. We are getting ready for our appointment with the pulmonary specialist in Portland and our big visit to the Boston Children’s clinic. A few days after the appointment, our daughter Daisy turns 3. She is way into everything pink and rainbow-y. We are ready for a reason to celebrate- and our little girl is the perfect excuse. Daisy taught us how big our hearts can grow once we became parents. Through her, Ethan and I have learned to love each other in a whole new and wonderful way. Because of her, I am a mom. It is the hardest, most amazing and heartbreaking job in the world- and I wouldn’t trade it for anything. While we no doubt will have many heartbreaking moments of connection over the next year, we also will have many moments of pure joy and celebration… we are doing our best to cherish all of them.

For more information on SMA please visit: http://www.fsma.org/

*The box we received has toys that are light enough for the babies to hold or interact with since most baby toys are too heavy for babies with Type I. The box also included blankets and items made by family members who have been affected by this disease. So touching and helpful…