Wednesday, May 18, 2011

Bowling for Lucy - SUCCESS!

Unfortunately, there are many, many things that can dangerously affect a child with SMA - the heat being one of them.  If a child with SMA gets too hot, it can cause them to get dehydrated quickly.  If they're dehydrated, their secretions thicken.  If their secretions get too thick, they cause plugs.  Plugs can be deadly for SMA children, completely blocking off their airway until you can move them with a cough machine and pull them out with the suction - there is nothing the kiddo can do about it.  Imagine how scary that would be for your child!

Needless to say, not only do we need to be careful in the winter, we need to be vigilant in the summer as well.  SMA makes it hard for kids to regulate body temps as well, so we try to keep Lucy in temperature-controlled environments.  Although it doesn't seem like summer will ever get here this year (!!), soon it will be too hot for Lucy to be outside for too long.

It gets hot in our house too.  We don't have central air conditioning, only window units for the two upstairs room.  Because of this, on the hot days we are forced to stay upstairs in our bedroom - much like the winter, just for different reasons.  We can't even run both of the window units at the same time because we have a small refrigerator upstairs for Lucy's food, so we're not constantly having to run downstairs and leave her unattended.  Since our house is old and has obviously had work done by people who completely disregard building codes, all of our upstairs electrical is screwy; it's impossible to run two window unit air conditioners and the refrigerator at the same time.  I honestly wasn't sure how we were going to get Lucy in her own room this summer, since she couldn't sleep in a room with no AC, and it would be hard for us to not have it.

God has taken incredible care of our family, though, and He came through again in the form of a fundraiser at Generations Lanes in Eldorado.  The bowling alley is owned by Jeremy and MJ Brenner, a cousin and cousin-in-law of Noah's.  They, along with Lucy's grandparents Jim and Jeanne Zahn, and countless others, organized and orchestrated a Scotch doubles tournament, raffles, silent auction and karaoke night to benefit our family.  The costs of having a child with SMA are astronomical, both financially and time-wise.  There are just not enough hours in the day to get everything done, and while insurance pays for some things, they sure aren't happy about it, and it's a struggle every step of the way.

The money raised at the fundraiser that night will be enough for us to fix the air conditioning in our van (which was unbearably stifling last summer!) and install central air in our house.  Now Lucy and I won't be stuck in the bedroom for half the summer!  This also means that we won't have to worry about risking an electrical fire to keep the refrigerator for her food running :)

I can't even begin to express how shocked we were at the success of this fundraiser.  We are continually pleasantly surprised by the sheer generosity and care shown to us by our family, friends, and complete strangers.  I don't think there's anyone who hasn't heard the term "it takes a village," and in the case of children with SMA, that is inherently true.  There is no way we could give Lucy the quality of life that we are able to without God's blessings coming through the people around us.

We were very sorry that Lucy couldn't attend (close quarters + lingering germs = unsafe environment for a SMA child), but we want to thank all who donated time, money and items for our family.  I know we can never thank all of you personally, but we will think of you every time we can watch a movie as a family in our living room, or take a trip with Lucy this summer.  I hope that God shines in your lives as brightly as He shines in ours!


Lucy and Ethel said...

That is fantastic!!!