Two

"She doesn't have SMA but I am assuming that she will have a similar outcome." Those words cut like knives. My heart breaking into a million pieces. I didn't know how to feel. There was some relief that she didn't have type 1 SMA which is basically a death sentence, those children rarely living past two. Then processing that no one knew what her diagnosis was but they saw a similar outcome of us not having her much longer. They told us she would most likely just get worse.. slowly losing all abilities.
Look at her now! She made it to two. She made it to two! It's such a big deal. A miracle really. I'm scared of making it a big deal. Letting myself think forward of how many birthdays she'll have and what she'll be like at each, is a bad road I go down too often. I have to consciously try to STOP thinking of what isn't and think of what is.
Layla is here and is doing so much more than the doctors thought she'd be able to. She can press on the piano on her playmat with her feet, and pull a rope to get a fan moving and can kick at me when I tickle her feet. She can catch my gaze and smile when our eye connect. She can yell and cry at me when I leave her alone and she doesn't want to be (always). And my favourite, she can full out belly laugh. All signs that she is there, she is present and she knows what she's doing. For that I am incredibly thankful. She is a typical two year old in many ways that we often overlook.

Thing are looking up for the coming year ahead. Hopefully an accessible van, more respite, more independence for Layla, daycare..

Party at the park tomorrow for the big 0-2. Family and friends will gather to celebrate this sweet little girl's life. 

"Today you are you, that is truer than true. There is no one alive who is you-er than you."

She's here!

Last Friday I received a phone call from Red Cross saying that a power wheelchair was ready to be delivered to my house on Tuesday! Fantastic news. Finally, Layla can get on the move. Aaron and I discussed how we didn't have a ramp but assumed that Red Cross would come equipped with one for delivery at least. And besides, there should be a few hands to help because I'm sure OT and Physio will need to be here as well. 
Boy, I was wrong, and felt very ill prepared. Yesterday comes around and I am the only one home because it's midday. This scrawny young guy hops out of the delivery van, alone. He asked me if anyone else was here, or coming to help. I guess not. He took one look at the stairs and said he would have to leave it in the driveway. Not ideal. I thought I guess I'll be hanging out on the porch all day keeping an eye on it. In the back of the van was a ramp to get it out onto the ground and so I asked if we could attempt to use that ramp on our side stairs to at least get the chair onto the back patio, and out of plain sight. After having to read through the manual how to turn it fully on and get it moving we made it out of the van and eventually up the back stairs. In hindsight I should've asked if he could get it fully into the house because it was only one small step away from getting into the house. But off he went. Leaving me with a 250+ pound wheelchair. Aaron and I were able to get it up the final step and into the living room when he got home from work.  
Unfortunately it doesn't come with a seat, so I assume that we will have to get our wonderful engineer over to make another custom creation to have Layla be safe and comfortable in her new chair. We're sort of in the dark because it seems physio and OT are both on vacation this week. Which explains why they didn't come to help make sure it arrived safe and soundly.  
I am incredibly excited to get miss Layla moving. But slightly overwhelmed at the fact we still need the seat, and ramps to get it outside and then a wheelchair van if we want to go anywhere outside the house and off our street. 
I know it will all come together eventually. And I'm so so SO thankful that this has been given to us (long term loaned). Looking around the living room at all the specialized equipment, thinking about the thousands of dollars we would've had to pay, if our healthcare wasn't so great. 
Now, I just can't wait to watch this girl get going. To develop further. No doubt in my mind that she will learn how to get moving in this thing. Many smiles and tears of joy to come.  

Here she is, with that one final step to go!