While my Mom and Dad, Emmett's grandparents, are reluctantly back in Ontario for a short time, my Dad informed Josh and myself that it is now our responsibility to take over the blog. And, since it is getting pretty close to Thanksgiving, I just wanted to express our thanks and appreciation to our family, friends, church community, and even to some kind strangers who have been so very generous to us. We cannot fully express how grateful we are to have such a loving community that is holding us steady right now. One of Emmett’s lovely (great) aunties made him a blanket and embroidered on the back are the words, ‘Emmett, loved beyond measure', and I am so thankful because I know that this is true for him.
The day that Emmett was diagnosed with SMA Type 1, my thoughts were filled with grief and fear and confusion. We had never heard of SMA before and could not understand how our healthy baby could actually have a terminal neuromuscular disease.
Then skip forward to today. Today, for the first time in over a month I got to spend a day with just the two of us, just my son and I. We read books, blew spit bubbles (Well, he did. Not Me!), went for a stroller ride, looked at trees …
When Emmett was born, Josh and I would argue about who would get to hold him. When he sleeps, I have to patiently sit on my hands while I wait for him to wake up again, because I can’t wait to cuddle him again. Nothing in the world makes me happier than when I see how much Emmett admires his dad. Emmett knows that whenever his dad is around something fun is about to happen. I am so thankful for my son, who couldn’t be a more cheerful and happy baby. It’s hard to grieve when a chubby, toothless, grinning face is gazing up at you.
Right now Josh and myself have a lot of different options to wade through regarding how we will proceed with Emmett’s treatment. We are starting to organize a therapy program for him, which will eventually include water therapy, physiotherapy, and occupational therapy. We are working with a social worker and the Infant Development Program to find funding for these therapies. This week we also will learn if Emmett is eligible to be entered into a clinical trial for a drug that could potentially mean a substantial improvement in his quality of life. We realize that this drug is only in testing stages, but it has done some pretty amazing things for a few other babies with SMA.
We are praying that he will be in the trial and that he’ll receive the drug and not the placebo (66% of babies in the trial will actually receive the drug). The trial is set to start on Oct.7th. I am grateful that we’ve been given this little bit of hope. According to researchers, SMA could be a curable genetic disease within 5-10 years. We don’t really know what this means for Emmett, but we are going to do whatever we can for him right now.
(Photography by Jocelyn Isaak)