Haaaaay, LucyLucyLucyLucy, SWING!

Lucy LOVES swinging.  She is a daredevil (as are most children with SMA, it seems), and she loves flying through the air.  She sits in Daddy's lap on the swings in the park and smiles and giggles with joy as he glides back and forth with her.

We were going to try to make Lucy a swing for at home so she could have that joy every day, not just on the days we could make it to the park.  I got a piece of wood and was preparing to make her a flat swing, since the adaptive swings are extraordinarily pricey, but there's always something that needs to be done around here and I hadn't gotten to it yet.

That ended up working in Lucy's favor - another family's daughter had outgrown her swing, and they were hugely generous, giving it to Lucy!  It's called a Jenn swing, and it can be adjusted to go back as far as we need it to, so that Lucy can swing on her own and still be safe.

Of course it was raining the day it was delivered, but I got it unwrapped and ready to go in anticipation of the next nice day :)  I got it up yesterday and Lucy gave it the inaugural ride.  I wish I would have caught the first couple seconds on film - there was a squeal of delight :)  She looked as if she were in utter disbelief that she was swinging all by herself.  What a big girl!

Thank you so much Salus family - Sophia especially, for sharing this awesome opportunity with Lucy!

Lucy language

There is an enormous range of abilities within the SMA diagnosis, even just within the "type 1" category.  Some kids can talk, most can't.  Some can move their arms, some can wiggle their fingers.  Some can breathe on their own for hours at a time, or even all day; some are vent dependent.

We weren't really sure what to expect for Lucy in the beginning.  I'm talking after finding a competent (to say the least!) doctor, one who didn't just say blandly, "Well, yeah, you *could* trach her, and will need to eventually..."  We didn't know if Lucy would retain any physical strength, or be able to talk.  As she grew, she lost much of the physical capacity she once had.  She can't lift her arms off of a flat surface, can't turn her head while laying down.  We now need to be extra careful when positioning her or picking her up - we almost always have to suction her first.  And Lucy can't talk.

I am extraordinarily grateful for the strength she has been blessed with; being diagnosed with a disease like SMA, it's more than we could ever ask for.  That doesn't mean that it doesn't hurt my heart that I don't hear her say "Mama," or get to listen to all the annoying questions that exasperate most parents.  She can say "ahv" for "I love you," and it melts me every time she does it.  For the most part, however, Lucy does not open her mouth to make noise.  It's a lot of work for her to even open her jaw, so the majority of her noise-making is humming and squealing.

It seems like she goes through phases of "talking" and not talking.  Weeks will go by with only hums and squeaks, and I'll start to think "okay, she probably can't any more."  We do oral therapy twice a day, but there's only so much you can do - it's not something you can force.  Then, after I've resigned myself to the fact she just probably won't be talking anymore, we get a few days where she wants to talk a lot.  And to me, it's like hearing angels sing.  It makes me teary with joy.  It's not words, or even syllables, but it doesn't matter.  It's Lucy language.

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's new toy - worth more than my first car

Well, not really.  I was born a little bit past the era when you could get a drivable car for a couple hundred bucks; but I digress.  Lucy has spent this afternoon playing with her wonderful iPad - look at her go!  These are "toys" that open wonderful new doors for children who live with neuromuscular diseases and cannot play in the traditional sense.

We were able to get Lucy this pricey piece of equipment due to the impossibly generous donations of so, so many people.  Not monetary donations, though - donations of discs that were no longer being used; CDs and DVDs.  Hundreds upon hundreds of them.  Boxes and bags of them.  We sorted through them as best we could and sent them off to iPodmeister.  They graciously gave us a 10% discount on the amount of discs needed to procure an iPad.  We ended up sending the requisite 675, plus an additional 30 to compensate for any damaged ones we had overlooked.  The company pays for shipping, which was a big plus!

A couple of weeks later, we received an email from iPodmeister, stating that they of the discs had received:

Incomplete cover art: 5

Radio Edits, Promos: 12

Scratched: 16

Incorrect CD in case: 18

Water damaged: 3

Club CDs (BMG, Columbia): 45

Penny-Items (resale value of <$1): 33%

Due to the fact that apparently 33% of the discs were penny sale items, figuring in the 10% they had allotted us, they could offer us a check for $269.  An iPad is not $269.  We had ended up with more discs and had 100 or so left, so I emailed them back asking if we could send those discs (on our dime, of course) to help make up some of the difference, but was hoping they could specify what constituted "penny items" so I wouldn't have to waste shipping money sending them.  After two days of no reply, Noah and I decided that it would be cost-prohibitive to send so many heavy discs anyway, and may as well put that money toward the difference.  I emailed them to tell them that we had changed our minds and would just accept the money offered, and they immediately responded to say that the check would be in the mail.

I am so unbelievably grateful that so many people put so much time and money into getting us the discs we needed; because of that we were able to get Lucy an iPad.  I would not recommend this process to any other family looking to get an iPad, however.  It is partly my fault for not reading all of the submission guidelines ahead of time, but after re-reading them in their entirety, at no time does it state how one can go about determining whether a disc will be considered a "penny item", so I assume it is left up to the discretion of the company.  While that might be good, legitimate business, it makes it a bit hard for the customer to defend - or even know - that they've earned an actual product.  

What's important, though, is that Lucy has this fabulous new toy that she can play independently on!  Her favorites - and the easiest ones for her to manipulate - are the Peekaboos: barn, wild, and forest editions.  She loves the kids' voices and the sounds the animals make.  She can also use the piano and likes making music.  If anyone has any suggestions for apps, we'd love to hear them!

Thank you, thank you, thank you to everyone who made this possible.  The generosity we encountered while doing this was breathtakingly overwhelming, and brought me to tears more than a few times.  Our family is truly blessed.

 

Motherly thoughts from someone's daughter

I hope I can be everything to Lucy that my mom is to me.

My heart hurts for mothers who are missing their angels in heaven.

Am I entertaining Lucy enough every day?  Does she get enough physical therapy, enough intellectual stimulation?  I can't just let her play with her toys for a few hours.

My house is a perpetual mess, despite my husband's best efforts, because I can't just put Lucy in front of toys for a few hours.

I think I'm creating the monster I swore I never would by caving to Lucy's demands - I have to work on that.

I wish I knew what the future will hold.

Once you start being a mother, you never stop, no matter where your children are.

To be a mother is to relinquish control of your life as soon as you've attained it, basically.

I thank God not only for the blessed life we live, but for giving me the ability to view it as such and not be constantly bitter.

Often I try to count the number of times Lucy smiles in a day, but I always lose track.

When I was younger, I could never understand why my mom asked for things like new towels for occasions; now I do, and that makes me happy.

I consider it a huge blessing to have both my daughter and my mother with me on Mother's Day, and any day.

I love them both unconditionally and irrevocably.

Happy Mother's Day.