Saturday, November 29, 2014

The New Schnaderbeck Winter Sport

Well, technically, it was Matt's winter sport for probably 10 years (or more) of his life.

But my winter sport was swimming.

This year we have a new Family Winter Sport. 
Alexis is joining the Merrimack College Women's Basketball Team via Team Impact. Our dearest friends Brady, Cynthia and Keith have been part of Team Impact for almost 1 year (I think). 
When I originally signed up, I asked if we could join the band - but they said 'nope - has to be sports team'. (ouch, I played in the marching band.... boo, not a team)

So I said, we need an indoor sport because Alexis does not regulate body temperature (if it's hot outside, Alexis is melting; if it's cold outside, Alexis is cold and crying).  I also hoped we would get a sport that the ball was big enough for Alexis to be able to see and anticipate if it came near her.

My husband played basketball in college, so I was kind of hoping that we'd get matched up with Basketball - and we DID!!!!  For an hour yesterday, we met the head coach, one of the assistant coaches and 3 of the players.  They gave both Alexis and Jessica these items: t-shirt, rally towel and flag!
Today we attended our first game. We felt like we were immediately part of the action - Jessica was able to run court-side during warm-ups and get high-fives!
Alexis was a little grumpy - but that's a parent-problem (we're trying to wean her g-tube feeds) and she was hungry.  We fed her during pre-game and she was loving it!

The team played so hard, it's been so long since I watched a women's basketball team (maybe high school)?  It was tied until 5mins left.  And guess what - the power went out!  (The team had asked us if there was anything Alexis didn't like at all yesterday - we had said "dark").  Well, guess what - when the power goes out, it take about 15 seconds for the generators to kick in the back-up lights - the power came back on and then the lights had to power back on (ahhhhhhhhh I work in Philips Lighting - we'll have to get them some LED high bay fixtures soon)

It was fabulous to watch the team finish out the last 5 minutes and sadly they ended up losing by 1 point - and you could see the frustration, sadness, anger, dismay on the team's face. It's going to sound rude, but I was so content. Seeing them feel those emotions is absolutely natural - I've felt them before on Alexis' journey. The pain when you get a dreary diagnosis, the frustration when you're trying to get something arranged and the world is just getting in your way, the dismay when you realize that you're swimming upstream with healthcare system --- but it's the determination that those girls learn (like I have) to make a difference, to push through it, to learn from the challenge, to dig deep - whatever you want to call it.  But essentially, it's the ability to look beyond yourself and focus on the changeable. Being part of something bigger (Merrimack College Women's Basketball) reminds us and these awesome players of the joy and beauty in the world. I see it each day in Alexis' eyes. The players and team supporters who came after the game to roll the ball on the floor with Alexis meant the world to Alexis and Jessica.

Hopefully as the season moves on, we can return the kindness.

For more information:
Team Impact:
Merrimack College Women's Basketball: 

Tuesday, November 18, 2014

Here's what NOT SLEEPING sounds like

We're alive.

Just a quick post to demonstrate what 


sounds like in our house.

(yes the picture is dark.... I recorded from my phone in a dark room - the point is to listen to the SOUND)

This is not sleeping.
This was recorded in Alexis' room at 11:10pm.  This is a SLEEPING time.  She is NOT SLEEPING.