May 2016

Expression: Go Ahead and Make My Day!

Emmett got a fantastic new chair. This custom made chair offers him support while providing a wide range of reclining positions for him to enjoy. Waving is one of the latest moves that we've been seeing - with Emmett usually waving with both hands at the same time!

Expression: You're Funny!

His Spiderman P.J.'s are a favourite!

Expression: Ha Ha Ha! That's funny.

Emmett enjoys laughing. He has an awesome fake laugh which you'll hear shortly.

Expression: Okay, this is pretty cool. Why can't I take it home?

Emmett recently got to try out a properly sized wheelchair. Alisha and Josh said that it was simply incredible to watch him manipulate the joy stick and move himself about. As he is going to be growing so quickly over the next few months/years, we are hoping that he is able to get a loaner wheel chair to start off. Making long range plans is exciting. And challenging.

Expression: Augh! This water is COLD!

Emmett loves the freedom that the pool offers and he thinks his bathing suit is quite lovely. However, no one enjoys the shock of a first dip into cold water.

Emmett is doing pretty good. He is almost over the cold that he had at the beginning of the month. He does, unfortunately, now have an ear infection which has made him rather irritable. This little cutie is getting bigger and bigger - he's quite a handful to carry around!

Emmett's 14th month birthday flew by and, on May 9, we missed getting a post up about it. Emmett missed out on much of his day also, because he was under the weather. He had a busy weekend with some trips to see family and, absolutely adorable photos here, an opportunity to play with some kittens. It could have been all of this activity. Maybe it was that he's preparing to add a 7th tooth to the mix. Or maybe just a spring cold, but Emmett's chest was quite congested and he had to be suctioned frequently. So much so that it was very concerning to Alisha and Josh.

A call to the paediatrician resulted in direction to go right to the ER to get checked out. After the typical ER wait - that was atypical as they had the stroller loaded down with his suction machine, his oximeter, his bi-pap machine, and his feeding pump - they saw the paediatrician on call. Blood work was ordered and a call to Emmett's specialist at BC Children's Hospital took place. It was decided that an overnight stay would be appropriate but this added to the challenge of the day. You see, no one at the local hospital was trained on the Bi-Pap machine and while in the hospital Alisha and Josh weren't allowed to set it up. In fact, if it required adjusted settings, that was beyond the parents' knowledge.

Well, after a bit of a wait for a transfer to Vancouver, Alisha and Emmett were taken to the airport and flown to Vancouver. It's just too bad that Emmett was asleep for the entire flight. His first plane ride, in an ambulance plane no less, and he missed the entire thing. Emmett is still in the hospital but he's doing well. They've run a series of tests on him and things are looking good. It was likely a virus, but he is past the worst of it and we are hoping that he is home soon. Maybe still tonight; probably tomorrow. Thank you to all of the medical professionals for their very good care!

Stay strong, little boy! We will see you soon!

Edit: Emmett was home about 8 p.m. Pacific Time.

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.