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.