Merry Christmas from the Willms' Family! Happy New Year too!
Emmett loves Christmas. It is a time of wonder. A time of colour and a bit of extravagance. A time to talk about Baby Jesus. The tree is awesome and when it first went up he had mom, dad, or whoever was close by pull the decorations off one by one so that he could touch them and then get them back on the tree. And then he went through the ritual again! He loves looking at nativity scenes and is especially intrigued by the baby Jesus. Presents ... we'll have to get back to you on that because we don't know yet. Pam got an idea from the internet about using ribbons as something for him to grab onto and rip open the present. Great idea - we'll have to see how it works. And in keeping with Emmett's needs, I used a tenth of the scotch tape that I would normally use to seal up presents. Emmett is still not sure about the snow, however, and while he does eventually warm up to it, his first reaction is that of tears.
Reasons for not liking the snow? First of all, it's cold. All little kids are affected by the cold more than adults. Then you bundle them all up and they can barely move ... well, bundle Emmett up and guaranteed he cannot move! Second, power wheelchairs don't travel well in snow. Makes sense, but it also means that Emmett's movements are limited. Here in beautiful BC we're now into the third week of snow - unexpected and unusual. Third, a combination of the first two - you cannot fit into a wheelchair all bundled up. When getting strapped into the car bed for transportation all bulky outerwear is to be removed - meaning you get a shock of cold. Three good reasons for Emmett not to like snow. The best reason for this pic is the little tear that is rolling down from Emmett's eye! But don't worry, he was laughing soon afterwards. By the way, Abbotsford is now into the third week of having snow. Locals are in shock. Right now it looks like it will be a white Christmas.
Emmett is surrounded by people who love and support him - and want him to get into the Christmas spirit. But Emmett does not like weird things on his head! Give him a jaunty cap and he'll flaunt it everywhere. Put a Santa hat on him and the faces he makes are awesome in revealing his distress. This little boy is a clothes horse whose fashion sense dictates what naughty or nice ... and a Santa hat is pure distress! I wonder what he would do if he were to meet Santa Claus! We won't find that out this year - too many germs hanging out around Santa Claus displays so they will get a wide berth!
In an earlier post we commented how Emmett not only loved his Christmas tree, but that he was fascinated by nativity scenes. Here at Grandma's house he was taking his chair closer and closer to her Charlie Brown's Christmas nativity scene. Then he'd wander off and explore the house, but then back to the nativity scene. I think Alisha and Josh were worried that he was going to knock them over, so Josh picked up the pieces and let Emmett get a closer look. Snoopy dressed up as a lamb is really pretty cool! It is very interesting to note that last year Emmett's favourite Christmas toy was a feather (a bunch of feathers, actually) because it was easy for him to pick up and play with. This year Emmett only grabs a feather to tease Wendell and, when Wendell steals the feather, he cries. His favourite toys are toy cars and airplanes that he loves to pick up. He has even held Baby Jesus from the nativity set (I'm not sure if Grandma knows that!). His head control is so much better and his head is rarely resting on his chair's head support.
Of course, it isn't truly a family gathering without scaring a little one. Purposely! Just like knowing that a Santa hat will cause grief, we have all learned that while Emmett loves a partially deflated giant Nemo the clownfish balloon the opposite is also true. When Nemo is newly filled he causes Emmett slight consternation. When Nemo is activated and swimming around the house, then Emmett fusses and panics. In his chair he will try to get away. Of course, if his mom is driving Nemo/swimming Nemo/flying Nemo (not that I'm saying that Alisha is purposefully chasing her son's wheelchair with a giant, remote-controlled clownfish that she knows causes him to be afraid) there's not a place of safety anywhere until Grandpa takes the remote away from her! And threatens her with a time out!
Emmett loves Wendell, his early Christmas present. They are absolutely best friends - at least, as long as Wendell doesn't invade Emmett's space and control his private property. As Wendell is a cat, you know that he views other's private sanctuaries as his own. Battles result.
Of course, a Christmas blog wouldn't be complete without a video of Emmett in water showing off his moves. Of course, while he will usually spin around in multiple 360° circles - as he knew the camera was on there was not as much action as normal. Emmett was recently at the public pool, and he just floated. He was mesmerized by all of the sounds, lights, and actions of other swimmers.
The USA Food and Drug Administration APPROVED Spinraza on Friday, December 23, 2016. This is the amazing drug that Emmett has been receiving (it has had three names since we first heard about it) and now, when a little one is diagnosed with Spinal Muscular Atrophy their parents will be given an option for medical treatment. This is huge and it is the first drug approved to fight SMA! What an amazing Christmas present!