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.

Warning: SMA parenting not for the faint of heart

Today was the first time I've changed Lucy's mic-key button outside of a hospital setting.  I know, I know - she's had it since 5 months of age, how have I gotten away with it this long?  Well, I didn't feel like doing it at home and having Lucy's food start shooting out of her ear at her next feeding because I placed it wrong somehow, and I hate being the one responsible for inflicting any kind of discomfort on my baby.

Yes, I give her a breathing treatment every day, which she's not a huge fan of.  I do oral therapy on her, and when teeth are coming through it's all kinds of un-fun.  This is a step in a different direction.  More medical.  Less Mama.  More nurse.  And while I am fully aware that as a parent of a child with SMA it comes with the territory, I was willing to hand off that chore for as long as the good nurses at American Families would let me.

Those nurses sneakily make it look like it's routine, everyday business.  I got a training session there, where they kindly walked me through it as Lucy whimpered below me.  I don't remember it being as stubborn then as it was today. 

I got the old one out no sweat, but getting the new one in was a different situation entirely.  It would not go in.  I took a breath and pushed harder.  Still nothing.  Gave a little spin.  Nope.  By now, Lucy is crying silently and breaking out in red splotchies all over her face.  I felt like someone who should be on trial for torturing their child.  Praying, I continued to push until I felt it give and slide right in, like it had been trying to get in there all along and I was the one holding it back.

I felt like puking.  Not because I was off-put by the sight of the hole in Lucy's stomach, but because I had hurt her.  Mamas are supposed to make the pain go away, not be the cause of it.  In a world full of unfairness, I suppose this is pretty far down on the ladder of injustices, but it's just not fair that because of SMA, I have to do things that make Lucy cry.  And not just in a "no-I-don't-want-to-eat-my-vegetables" cry, but a "why-are-you-doing-this-it's-hurting-me!" cry. 

Boo to SMA.  I want to make *it* cry.

And now I have to watch for ear-food.

Oh, and just so you know - 10 minutes later Lucy was laughing at Daddy (the good guy), and has seemingly forgiven me.

Glasses = Minor Mental Breakdown

Lucy had her Madison clinic day last week, and at the suggestion of Dr. Schroth, we took Lucy in today to see a pediatric ophthalmologist about her strabismus.  After a 3-hour appointment (and Lucy having her eyes dilated and then pried open while she cried - NOT fun), the doctor said that the inner workings of her eye looked like they were healthy and developing well, but she has rather severe astigmatism.  The kind that she probably won't grow out of.  The kind that needs corrective lenses.

While this may seem like an easily fixable, minor - dare I say paltry - diagnosis, especially in the face of SMA, it has upset me more than I realized.  I haven't been sleeping well lately.  Having a hard time falling asleep, really.  I can't seem to shut my mind off.  It's always racing with the next idea, what I have to do the next day, things I have coming up, and how I'll squeeze everything in.

As I lay in bed in the wee hours of the morning after finishing a project last minute, I find myself crying.  Crying because no matter what I do, no matter how much I do, I can't do what I really want to do.  What I wanted to do.  Have a healthy daughter.  No amount of sewing is going to fix Lucy up right now.  I think the glasses were the feather on top of this particular pile that toppled it for a few minutes.  Not only does Lucy have to live with SMA every day - something I inadvertently passed on to her - I couldn't even give her decent vision.  In the darkness at four o'clock in the morning, I feel like an utter failure.  

I know none of this is my fault.  It's nothing I could have predicted, it's nothing any of us deserve.  I think it's mostly the lack of sleep that makes this seem so much bigger than it is.  And, just like the treatments, the BiPAP, the surgery, the loss of movement... we'll become accustom to the glasses.  Lucy will become accustom to the glasses.  She may not like them at first, but they will better her life - just like all the other things she's gotten used to.  And her continued perseverance will just allow me to admire her all the more, which is something I can live with :')  Goodnight.

Clinic Day!

Looong day yesterday - clinic days always are.  As usual, this one was a complete success!  Lucy is growing right on track.  Her BiPAP settings are working great for her, and Dr. Schroth was very impressed by her chest wall.  Her medicines dosages were adjusted for her size (which is 34.25" and a little over 24lbs!), and we checked out some new BiPAP masks.  They measured Lucy for nasal prongs, but  - as Dr. S said - "she has some tiny nostrils!"  It's going to be a while before prongs are an option for us.

Something else we discussed was Lucy's eyes.  For the past 6-ish months, Lucy has had issues keeping them simultaneously focused.  At her last appointment I brought it up to Dr. S, but Lucy kept them focused the whole visit (of course), so she didn't really see what I was describing.  Lucy was tired this visit, so she saw it.  She thought it might be an area of concern, so back to Madison we go next week, for a 2 1/2 hour visit with peds ophthalmology.   

Dr. Schroth is incredible.  Amazing.  Exceptional.  And none of those words describe just how awesome she is!  She called when we were on the way down there to discuss some of Lucy's equipment, medicine, etc.  When we were there, while we were seeing the RT, dietician and getting blood work (boo, but Noni got it so fast!  Lucy was rewarded with a Beanie bear; Noni was rewarded with an angry glare), Dr. Schroth was helping us straighten things out on the Lucy equipment/medicine front.  I wouldn't think it possible, but every time we leave there I love her a little more!

I think I heard how wonderful of a job we were doing with Lucy at least a  handful of times.  Besides the glowing reports on Lucy's overall well-being, that may be my favorite part :)  There is so much that needs to be done for Lucy to thrive, and it's nice to have the reassurance that we are doing our jobs from one of the most respected SMA pulmos in the world.

Sorry it's been so long since my last post!  I haven't had the time to ponder life's deep issues, and even less time to blog about them.  Between keeping Lucy entertained and keeping Couture to Cure SMA stocked, there just isn't any free time left!  I will put it out there that the fabulous Marjorie Trew-Munson is kicking off springtime fundraising with a rummage sale in May.  She will begin accepting donations in April, so if you have any spring cleaning to do, contact me and I'll get you in touch with her.  There will also be a Scotch doubles bowling benefit for Lucy on May 14, complete with auction and raffle.  For more information please email Jim Zahn at jj2326eld@charter.net. 

I've started praying with Lucy every night.  She quite enjoys it!  We give our thanks, and ask for help.  Her favorite part is the flourishing "Amen" at the end :) 

"For everything comes from Him and exists by His power and is intended for His glory.  All glory to Him forever!  Amen."  - Romans 11:36

A Charm for a Cure

A few months ago, a local fellow Etsian approached me about doing a necklace for SMA.  Kim Jakum of Metalmorphis asked me to design a necklace that I thought captured SMA.  I mulled ideas over the holidays, and we were finally able to meet last month.  Not only did she take my idea and turn it into the fabulous charm listed in her shop, she brought me a whole goody bag of fancies to use in clip making - it was like Christmas all over again!

Kim recently won third place in a metalcrafting contest for one of her beautiful, creative, exclusive designs.  The amazing jewelry in her shop is not only made of the highest quality materials, it's made with a superior knowledge of the craft.  I'm a huge fan of personalized items, and she has those in abundance.  Would you like to have some of your child's artwork immortalized in a necklace?  She can do that.  How about your baby's footprints?  Yup, that too.  Perhaps you'd like your kiddo's fingerprint around your neck?  Kim is successful at transforming bits of your life into wearable art.

Obviously I'm biased, but my favorite is the "Lucy's Fight to Cure SMA" necklace (with the wearable artwork a close second - seriously, how cool is that idea!)  I wanted something that would present the true essence of a person with SMA - the big heart, the bright mind, the fight they possess.  These kids (and adults) are all over the world.  And they are truly a gift from God.  How could they not be, when they all bring people together for the greater good?

I'm very proud of what we've come up with, and I want to say a sincere thank you to Kim, for making such a beautiful piece to represent our fight.  And, true to form, it's completely customizable, with your choice of birthstone in the heart, and a name and birthdate inscription available on the back.  What puts this all over the top is that with each necklace sold, $15 is donated to the Gwendolyn Strong Foundation for cure-based research - can't get much better than that!  So head over to her shop to get your order in!