I love this photo that Alisha captured on her iPhone. The joy and excitement in Emmett's expression. The way that he's leaning forward. How his hand is gripping the joystick and urging the powerchair to go even faster. Clutching his stuffed hippo in the other hand as he drags it along on his journey. His costume - which I truly believe transports him to the Wild West where he is Woody the Cowboy on an adventure.
Every day in Emmett's life is an amazing adventure. Through this blog we have been sharing some of the heart highs and some of the lows. Emmett's love of life shines through everything. God has truly blessed us with this little boy. On the other hand, you already know that I do not view SMA Type 1 as a blessing.
On the ninth Emmett was 2 years and 8 months old. Right now he is at BC Children's hospital for assessments, tests, and then his lumbar puncture and injection of Spinraza, the super cool drug that is changing the way little ones with Spinal Muscular Atrophy live their lives. This will also be the first time that Emmett, Alisha, and Joshua have been able to see and appreciate the newly built wing - the Teck Acute Care Centre. This facility is, from all reports, simply above and beyond in what it offers to the little ones and their parents. We were amazed with the care and support at the old facilities, but this new building has windows, facilities to allow parents to be at their child's bedside in some comfort, and has bright, airy hallways. Simply wow!
Remember Emmett today and tomorrow. There will be all kinds of tests and assessments. Some are fun. Others are not. The lumbar puncture absolutely not. Yet Emmett looks forward to these visits. It makes me wonder if this little one remembers that, at six month of age before these lumbar punctures happened, he could barely move. What do little ones remember!
Praying for you, Emmett.
The Family Fall Festival - which in simple terms is Hallowe'en!
So how does a little boy who gets rather bashful about meeting new people handle Hallowe'en? Well, first he gets lots of practice driving through leaves. Then he dons the costume of his alter-ego. That is none other than "YEE-HAW!" - which is two year old talk for Woody the Cowboy from Toy Story. Then you go out to the Chilliwack Corn Maze with your church family to check out the animals and pumpkins. Alisha and Josh decided to avoid the actual corn maze simply because when they checked out the maze in early October they had great difficulty getting Emmett to leave and go home.
Then Emmett had a few trial runs in his Woody the Cowboy costume just to ensure that it would fit. And which hat he preferred to wear! This little man is very particular about his head wear and won't allow just anything on his head. The cowboy hat, however, was barely allowed to come off. Of course, in a huge gust of wind the hat was lifted from his head and went flying. I went to grab it and almost got it but the wind caught it again. At that point Alisha directed me to go back to my position with Emmett while she captured the wayward cowboy hat. And the costume and character was whole once again.
Then it was trick or treating time on the big day. The first house was prepped for him and book (5 little pumpkins) plus a stuffed Hippopotamus just made his day (yes, we were waiting for this moment!). The second house was some neighbours who always see Emmett out for walks. Emmett has been thrilled to see their display of pumpkins and ghosts on our weekly walk and, upon ringing their bell (well, we rang it because Emmett couldn't reach it) they popped out with an awesome helium balloon that was an awesome jack-o-lantern! (There were a few chocolates for Emmett's grandpa, too!) Next was Emmett's great-grandparents and grandparents. Emmett loves his great-grandparents place as there's an elevator and long hallways that he can race his chair down!
Finally it was back to his own neighbourhood and Woody the Cowboy was now completely into the groove. Up close to the door, get mom or dad to ring the bell, and then politely indicate that of all of the goodies available that his preference was a shaker. Now, normally a kid doesn't get to choose when they're out trick or treating, but that seems to be one advantage of being Woody the Cowboy (or maybe it's being a cute little kid wearing a Woody the Cowboy costume while in a wheelchair). You get a bit of preferential treatment while trick or treating. So Emmett got a ton of shakers! (Not really a ton, because he didn't even make it to a dozen houses). And at one house he got an awesome glow stick.
There was a sad moment when he dropped a shaker and then ran over it with his chair. As all of us have had our toes run over, we can tell you that the shaker didn't stand a chance. Emmett was quite distraught about that - until the next house and his shaker supply was replenished. So that's it until next Hallowe'en - oops, until next year's fall Festival. Are you wondering what a shaker is? Well, if you're a kid who cannot eat anything at all then you're creative - and SMARTIES are awesome Shakers! But is this really it until next year ... not when there are post Hallowe'en sales! To Infinity and Beyond!
Meanwhile, Emmett is busy helping out around the house. Need a garbage can to fill up with leaves? Emmett will get it for you! Does it have leaves in it already? Not a problem, Emmett will dump them out and spread them across the yard. Have a pile of leaves in the middle of your yard? Not for long if Emmett is around - he'll plow right through them and spread them everywhere. Such a happy little helper!
Of course, when it's over and time to stop the fun, then Emmett has a few thoughts. Fortunately, he is pretty good at going with the flow and moving on to the next task! Even though at the time he may not appreciate the change.
Are you trying to remember last Hallowe'en? Here's a glimpse back at 2016.
There was no post on October the ninth, which was the start of Emmett's 31st month. It was also Thanksgiving and a time for gathering with family and friends and thinking about all of the things that we are thankful for. And there are a bunch. But that is not why we missed getting a post out on the ninth. And Emmett is doing very well - that didn't stop the post. He's feeling very good and has bounced back from his September health issues. This is a good thing because we want him to be strong as we head into flu and cold season. Emmett got to go out to a corn maze where they didn't get lost, but for Alisha and Josh it seemed like it as Emmett would have stayed all day. Searching for pumpkins was also great fun. He found it so intriguing. His mom and dad had to literally drag him away! LOL!
Earlier this month Emmett was back at the Greater Vancouver Zoo. While there his favourite animal, the hippopotamus, was swimming around and submerging and then popping its head back above water. It even yawned once - but Emmett had his chair turned so didn't see the yawn. Plus Emmett spent a couple of days at Camp Squeah, just outside of Hope, B.C. Lots of trees, fresh air, and he got to see a deer family eating lunch in the camp's garden. He also got to wheel around in the gym while everyone else was having meals. The great thing about a G-Tube is that Emmett isn't tied down by three meals a day - which meant great times in the empty gym.
And Thanksgiving at his Grandma and Grandpa Willms home was lovely. It started off with an amazing scavenger hunt in which Emmett had to scour their large property to find toy animals that were hiding everywhere. There had to be two dozen or more of the little critters waiting for Emmett to find them. Then great family time that included his Great-Grandma and Great-Grandpa Willms. Emmett napped while all of us enjoyed a turkey feast.
As both Woody the Cowboy and Buzz Lightyear are still very much a part of Emmett's daily activities, you're going to have to wait until the end of the month to see which of these characters actually shows up at the Willms' home. Emmett doesn't know, but even if he did he wouldn't tell you! He's great at keeping secrets. Especially if he doesn't know you well, then his lips will be sealed.
Thankful - for a medical community that supports Emmett and his family in so many wonderful ways.
Thankful - for the drug trial that Emmett has been part of for over two years now. This drug, called Spinraza now (it's had a couple of names), literally amazes us.
Thankful - for his power wheelchair which gives him great joy and freedom to move about. And amazed that the moment he was set up in his colourful wheelchair, he grabbed the wheels and started to attempt to move them. He needs back support right now plus doesn't have the upper body strength to get it rolling on his own, but he's trying. With a little nudge he can keep it moving for a little bit.
Thankful - that his speech is getting better every week. Obviously those familiar with him understand him much better than strangers, but he is certainly making progress. And you should hear him sing! Of course, he still is in a shy mode so there is no singing or talking or verbalizing anything when strangers are around.
Thankful - for so many things. We cannot recount them all.
But you know, even though we are thankful for so much this is still tough. Would we be more thankful if Spinal Muscular Atrophy Type 1 hadn't had it's grip on Emmett's body? Would we be less thankful? Would I know my grandson as well as I now do? You know, I am so thankful for this little boy, his mommy and his daddy. But this disease, Spinal Muscular Atrophy, this is a terrible disease. It affects babies and, when it is at its worst, SMA stops them from moving and swallowing and breathing. It changes families. Every aspect of Alisha and Josh's life revolves around how SMA has affected their family. They cannot run out to the store without making plans ... the store! Seriously, they cannot even run out into the front or back yard to do yard work.
Why wasn't there a blog post on October 9th, Thanksgiving day? Here I must put in a disclaimer and specify that this is me and me alone talking. Not Emmett's mom or dad. Not his other grandparents. Me. There was no post because I wasn't sure that I was thankful. I was and am angry with SMA. I'm angry at how it affects not only Emmett, but so many other little ones around the world. It shouldn't happen. Of course, that can be said about all of the other diseases and natural disasters and horrible things that happen in this world we inhabit. It shouldn't be. But with SMA, it is right here with our family. We see it every minute of the day. And as a grandparent I'm not even right there - I still do my own stuff. Emmett cannot. He will need ongoing support. Period.
So this blog is a few days late ... but I can say that I'm thankful. I'm still angry - but I'm thankful. I am thankful for this little boy that we love with all of our hearts. This little one who marches to his own drummer. Who has started doing scissor kicks in the bathtub. Who tries to roll his own wheelchair. Because ... There is hope. There is always hope. SMA - well, we will temporarily forget about you. Because we have a little boy to read books with, to count with, to practice talking with, and to laugh with! Laughing with my grandson - there is nothing better. And I'm very thankful for that!
If you look behind Emmett in the above photograph, you'll see his tracks in the grass. He wanders. Goes left and then goes right. Follows the sounds and sights on his journey. His path, like any other two year old, is rarely a straight line. And that path Emmett created is an analogy of life. We may want the straight pathways like Tom (Tom, thank you for the ramp you made for Emmett and his wheelchair. We're thankful for that too!) made while he was cutting the grass on this large field; Emmett's path will likely always be like a wibbly-wobbly line, it is going to take longer to get from A to B, but perhaps along the way everyone with him will shout 'Yee-Haw' like Woody the Cowboy and Hiccup like a Hippopotamus* or caw like a crow. And I'm thankful for those precious moments.
*Don't understand, then you need to read the book Hiccupotamus by Aaron Zenz.
I'm also very thankful for OSM Websites who have provided awesome website support for www.emmetts-journey.com from the very beginning. Thank you.
Out for a roll on the Boardwalk!
This has been quite a month for little Emmett. Of course, you're very aware of his lengthy stay in ICU as he overcame a cold. It was hard on him but he was really a happy little camper throughout the ordeal. But that all changed just a day or two after he was released. He came down with an infection that was not easily identified and he was simply miserable. He didn't want to be touched, picked up, or held! While the last blog post shows him in his wheelchair, he really hasn't been in it much since then. It literally seemed like he was crying and moaning all of the time. This little boy whose normally brilliant smile is everywhere was miserable and simply had trouble smiling. His sleep was disrupted. Everyone's sleep was disrupted. Finally, after a couple of doctor visits, Emmett got on an antibiotic for what Emmett could now describe by pointing to his ear as a very sore ear. He had a bad ear infection. And just now, at the end of September, is he finally bouncing back.
The ongoing challenge is that Emmett has really lost a lot of strength over this past month. Even as he is bouncing back there are obvious concerning factors. He does not like sitting up right now. This was a huge milestone that he had attained and we know it will come back, but right now sitting up is obviously very uncomfortable for him. He is still bringing his knees up, raising his arms, and rolling to his side. Obviously, we are concerned when we see anything that seems to be holding him back.
The good thing is that Emmett is smiling again. And talking. Unless his cousin Henry is nearby. Or if he's on FaceTime with his Uncle Josh. Or meeting with his speech pathologist. Or virtually any guest/stranger. Then Emmett's eyes become fixated upon someone that he knows and he clams up. Once they leave, however, then a stream of two year old language lets loose! I can understand not talking with Henry, because baby Henry is going to be laying claim to Emmett's toys so he is already showing dominance by being aloof. And Uncle Josh does have an American/Australian accent which is confusing. Why he won't talk to his speech therapist when he loves to chat with his nurses and doctors - mystifying.
If you were wondering, the Buzz Lightyear and Woody the Cowboy phase is still going strong. Emmett has claimed my Buzz Lightyear and, gracious grandpa that I am, I have loaned Buzz to Emmett. On condition that I get to play with him (Buzz Lightyear) when I come and visit. Fortunately, Emmett has his own Woody the Cowboy so I can keep mine. The thing is, my Woody the Cowboy talks and Emmett's doesn't. I'm wondering if the writing is on the wall ...
There is a lot of anticipation about Emmett trying out the MegaSeat wheelchair that we built for him. Unfortunately Emmett is not ready to use it. He has to be comfortable sitting with limited support before he can use this homemade device. So right now it looks cute and Winnie the Pooh has claimed it as his spot! But whenever Emmett is ready for it, we'll give it a go. Several of the photos included have Mill Lake in the background. We had a lovely stroll and roll with Emmett the other evening. He loved seeing the water, the ducks, and the geese. He's relatively comfortable in his electric wheelchair now - because it has significant back support and, if required, head and neck support also.
This weekend he'll be heading to Camp Squeah with his parents and us for Level Ground Mennonite Church's fall retreat. The weather forecast is not the most promising, so we will let you know about our weekend retreat soon. Until then, Emmett's going to be rolling along. But a little bit slower for the immediate future.
If you're curious about the DIY Wheelchair click this link, then there are more details and a parts list on MotoIQ.com - great to see an online automotive publication take an interest in a project like this. I'm glad to be associated with them.