It is Mother’s Day. As I am a Dad and a Grandpa and not a mother, I am probably not well suited for writing about Mother’s Day. But I'm not so much writing about Mother's Day as writing on Mother's Day. Plus, I will do what I almost always do. I will write about Emmett. This is Emmett’s second Mother’s Day and it is so special. There have been so many highlights and so many challenges in the year since this day last appeared on our calendars. A day to celebrate so many things. With Emmett in our lives, it is even more precious.
It is almost impossible to explain what it is like to live in crisis mode for months on end. Unless you meet someone else who is also in crisis mode – and then no words are necessary. When the crisis is centred around your baby, then Mother’s Day becomes even more special. And even more challenging. It causes you to wonder about the future. To look back at the past. To think about so many things.
This morning some of what I’m thinking about as a Grandpa of an almost 14 (that big day is tomorrow) month old little boy, who at 5 months of age was diagnosed with a terminal genetic disease by multiple specialists and a terribly short lifespan was offered, is how great it is to have us with him. But I also think of some of the well-meaning but misguided offers of comfort that we have heard. Things like - the doctor’s just told you that to scare you. Well … yes, I guess that's right. They sure did scare us!
Or how this will make us stronger.
Hmmm. Do we really need to be stronger? Is this the only way to be stronger? We want Emmett to be stronger; I don't need strength but he does. Can you be stronger with a broken heart. We will be different and there is no question about that. I am not sure about the stronger part. Being different can be good. And a broken heart can be mended with a cuddle and smile from Emmett!
Of course, there is this standard phrase - This will allow us to understand and help others. Better. Of course. Dealing with a severe illness does help anyone understand the depths of the challenges that another may be facing. Oh my goodness, this is a tough way to learn understanding and empathy.
One thing we know for certain on this Mother’s Day is that we love Emmett. I see that every day in Alisha and Josh’s conversations, texts, and phone calls. I see that in our extended family and in the Willm’s extended family. That we will do anything we can to support Emmett and to brighten his day is undeniable. His smile, and I am quite positive of this, can move the entire world! His eyes will not only captivate you but they will pierce your heart. And when you see movement where before there was no movement, you will marvel at science and what man has accomplished. You will believe in God. And you will realize that the doctor’s were not trying to scare anyone – they were simply doing their best to prepare a family for the reality of Spinal Muscular Atrophy, Type 1. The number 1 genetic cause of death in infants.
Our hearts are broken on this Mother’s Day for our friends who have lost their babies to this disease. Or to other causes. We do not understand why this had to happen to them anymore than we can understand why it happened to Emmett. We do see that Emmett is showing progress during this experimental drug trial. And we know that other babies did not have that benefit and God has taken them back to be with Him in heaven. The real thing or the placebo – that is painful for us. And we don’t even begin to understand how painful it is for them.
A disease that kills off the nerves in the spinal column. Yes. We are scared. Yet at the very same time we have hope that fills our eyes with tears. On this Mother’s Day we can tell you that Emmett has demonstrated some superhero moves! This little boy has begun lifting his head up. Yes, he has started LIFTING HIS HEAD! Then just a few days ago, during a nap, Emmett rolled from his side onto his back. This is beyond huge! Emmett may move his arms while sleeping, but he is always in the exact same position when you check him. He does not move. He did not move. UNTIL NOW! Oh how much we want to know what will be next.