Links for Lucy!

Whew!  What a wonderfully successful event our (possibly first annual?) Links for Lucy golf outing and dinner was!  We actually got there on time, and so Lucy was able to greet people in the clubhouse before they headed out.

Sawyer wasn't golfing, but she said hi to him anyway.

Everyone arrived early to check in and get their drinks (this is Wisconsin, after all.)

Cheers, Daddy!

Once everyone checked in, they were ready to head out!

Good luck Daddy!

The weather held, and I really think the overcast skies and breeze on the course helped keep our golfers from melting completely.  They golfed a full 18 holes on the beautiful course at The Golf Club at Camelot.  Just as the golfers were starting, some of Lucy's friends arrived, so we got to chat for a bit!

Jerika, Mateo, and Lucy just chillin'.

Then we had to head inside to set up the silent auction and other prizes to be had :)

Lucy, holding down the fort.

Lots of goodies!

A very cool cigar box guitar, handmade by the talented Jamie Bark.

By the time we finally managed to fit everything on the tables, our first golfers were starting to trickle in, and we had a few more of Lucy's friends who had joined us - they came from near, and as far away as 4 1/2 hours!

Partying outside - not everyone is a polar bear like Lucy, and the building was heavily air conditioned :)

The lovely Leah :)

After getting a sugar packet rush, wheelchair races started!

The last golfers arrived, and the charming and talented Tyler started talking up the prizes - I don't think a single person escaped his spiel!  

Bidding on something himself, because he's just that great a guy.

Then Lucy's grandpa Greg led with a wonderful prayer, and we all got to chow down - those golfers looked pretty hungry at that point, so we thought it best not to deprive them :)  

After dinner, Noah got on the mic to thank everyone for everything that was done to put this event together.  It all seemed to come together so seamlessly to us, but that was because of the generosity and hard work of so many!  He got to give away the prizes and silent auction items as well, and kept everyone laughing the whole time :)

The night ended at the perfect time for Lucy - even without golfing 18, it was a long day for her, and she was ready for the comfort of home.

Lucy's "done" face - at least Gabbie is smiling!

Ahh... bipap.

At the end of the day, my cheeks hurt from all the smiling I had done.  The feeling of the whole event was one of family, camaraderie, and warmth - every person there wanted to help Lucy, and that was an incredible feeling.  We even had a woman come into our building after she was done golfing, who had seen the signs for the event and wanted to donate to Lucy!  The whole thing was just incredible.  And when everything was said and done, with all the golfers and dinners, silent auction and prizes, and other donations - and an anticipated donation from the West Fond du Lac chapter of Thrivent Financial for Lutherans of $750, after we submit them our total - we came in at a little over $8,000!  More than I ever imagined we would receive.  And it also came with suggestions of doing the event again next year, which we are game for!  There are many things that a child with SMA needs, especially as they get older, and you realize that for your child, SMA is not a sprint, it's a marathon.  We are so extremely grateful for the way our community has opened their hearts to Lucy.

Thank you to the huge group of people and businesses who made this happen!  To Lucy's Grandma Lauri for organizing, Grandpa Greg and Grandpa Jim for helping to get donations and baskets, and to our hole sponsors:

Tecre Co., Inc.

Cole Oil & Propane

Caroline Lamont of Stage Me to Sell

Luedtke Lumber

Michels Corporation

Valle Construction

Rick and Pat Miller of Culvers

Smith and Hatch Insurance Agency

Andy Bauer's Dumpster Service

Batzler Trucking

Khale's Krusade/Dr. Peter and Pamela Timmermans

Anonymous

Buerger Builders

Paul and Laurie Krasin

Theresa Mutual Insurance Company

Jeff and Cheryl Kuntz

Kelley Country Creamery

A big thank you to all the people and business who donated prizes and silent auction items:

Luedtke Lumber

Valle Construction

Gilles - I realize it's spelled differently on the website, but if you'll look at the picture on the left, that is the location in our town; spelled "Gilles" :)

Bublitz's Restaurant

Fireworks City

Gwendolyn Strong Foundation

Nikabella Photography

Olde Towne Beverage and Pizza

Loomy Bin

Dusty Road Gurl

Widmers

the Packers

Jacobson Farmers Supply

The Golf Club at Camelot

Couture to Cure SMA

Unite 4 Peyton

Jamie Bark

Lucy Zahn

Greg and Lauri Betz

Jim and Jeanne Zahn

Gene and Irene Miller

Matthew and Colleen Zahn

Don and Carol Huck

Juddy and Brooke Herwig

Beth Cornwell

Trisha Branson

Bette Vollert

Merry Damrow

Joan Buerger

Rendermans

Kate Vogedes

Ken Reimer

If anyone was left off the list, I'm sorry - our recordkeeping will be improved next year, I promise :)  Know that we are grateful for your contribution as well!

Everyone was amazed at the bounty on the tables :)  Thank you to Tyler for running that business - he did an extraordinary job, and we hope to retain his services next year!  And heartfelt thanks to all of the attendees and donors.  It was amazing to see the people there, people who set aside that day to help Lucy.  The generosity and love was incredible to feel, and we won't forget it.

Now, onto the next fundraiser, and making more strides toward our home addition!

Lucy checkup update!

We had a follow-up appointment in Madison at the American Families Children's Hospital for Lucy today, to have another ultrasound on the bulge in her stomach, and to talk with Dr. Nichol about the results.  The ultrasound was super early for Lucy (as in 9:50am), so she was less than thrilled about getting probed.

Dr. Nichol then came in and checked Lucy out.  We haven't seen him since he did Lucy's g-tube/nissen when she was 5 months old, and he was shocked at how tall she was :)  Really, when we tell people her age, everyone is.  Anyway, he felt around on her tummy, and said that the lump was for sure an ovary.  He discussed the results with the radiologist, and there is nothing abnormal about it.  He also explained the reason that it is more pronounced when Lucy is trying to relieve herself - her insides are contracting.  If someone would have just explained that to me in the beginning, I would have been more inclined to believe it was actually Lucy's innards I was feeling, and not a giant blockage!  But now we know, so that's good.  And everything is okay, which is even better.

I got a wild hair when we got back, and decided to rip apart and wash down a playhouse that was gifted to Lucy by a very special friend a couple of years ago; Brianna also has SMA, and was very generous in giving Lucy the playhouse that she had grown out of.  Since it's so hard for me to get Lucy in our backyard by myself during the day, and our deck isn't particularly structurally sound enough to have such a large and heavy toy on it, we haven't gotten much use of it, and that is a shame, since it's perfect for Lucy!  I've been inspired by Pinterest, and decided to give it a makeover so that when Lucy gets her new doll for her birthday, they will have a place to play.  We are going to bring it indoors, so she can play with it in the summer when it's too hot to go out, and in the winter, when we are on lockdown.  I may be more excited than she is!

Hopefully by the end of the weekend, I will have some "after" pictures to show you!

We are coming into the home stretch before our Links for Lucy golf outing and dinner.  Attendance is looking minimal, but every dollar helps, and we are so grateful for the donations, the hole sponsors, and for those who will be joining us at the event.  We are very blessed to have some extra special people in our lives!  You can still register to join us, either for golf and dinner, or just dinner - email me at bzahn84@charter.net.

Summertime Fun!

Summer is finally, fully here!  And we have been celebrating with lots of fun outings - some of them so fun, I have forgotten to take pictures!  Anyone who knows me is so shocked by that statement, I hope you are sitting down ;)

We started with a visit to a friend's farm, to see the cows and ducks.  Lucy was fortunate enough to get a private tour, so she could get up close and personal with the savage beasts.

This cow.  Is trying.  To eat me.

And she got to watch some profession duck herders corral the flock.

We tried to sneak closer, but Lucy's duck-murdering-machine (aka her stroller) kept them on the move.

We didn't let a few sprinkles, some breezy weather, and a missing Daddy stop us from checking out the Memorial Day parade.  Thank you to all of our servicemen and women.

Of course, Lucy's favorite parts were the noisy bands and the blaring sirens.

They're comin' ta git me!

We also hit up the June Dairy Days festival, which had its very own petting zoo full of baby animals yelling for their parents.  Lucy got all kinds of little creatures brought to her, including a baby goat, fluffy chicks, the teeniest, softest baby bunny I had ever seen (seriously, its eyes weren't even open yet!), llamas, and on the way out we hit up the baby calf, which was covered with children and frozen in fear earlier.  (Disclaimer: not sure if calf was frozen with fear or lounging in the shade, but I initially didn't even realize it was there, there were that many children piled on top of it.)  Noah got Lucy up out of her stroller and crouched down with her, since the calf wasn't coming to us, and I helped her pet.  It was her favorite, as indicated by her huge grin!  No pictures; this was a busy, crowded event, and I was on high alert for a sticky, dairy-covered kid running into Lucy's stroller.

We had cousins visit from Georgia, and the last day of school party at the park.  We got a chance to take Lucy to her classroom one more time, and then I was able to walk her to the park to meet up with her class and one other for a play afternoon.  She got to take turns on the slide and swing, which she thoroughly enjoyed, and meet a cluster of "big girls" (FIVE year olds, look out!)  Everyone was so friendly and thoughtful, and it really was nice to see Lucy be included and loved by kids her age.  Again, no pictures - if you can figure out how to snap a shot while you're sliding 33lbs of unassisted weight down a slide, you let me know.

We also got to meet up with some of our SMA family at Gilles!  The Burks family drives all the way from Kansas to see Lucy's famous, fantastic pulmonologist in Madison, so we coerced them, with promises of frozen custard, into tacking on some extra drive time to come see Lucy and Mateo.  The kids hung out and the parents got to catch up and compare notes.  It's always so nice to see some of the clan :)

Custard!

The aforementioned clan.

After it was all over - she got a lot of fresh air that afternoon!

And we got to hit up the famous Walleye Weekend on Sunday, to see my favorite cover band and yours - The Presidents.  As I heard it put so aptly on the radio, they're not just music; they're the whole show.  And Lucy even got a shout-out, which led to a woman approaching us and offering to put a donation canister for Lucy out in her establishment!  We left, feeling that our socks had been thoroughly rocked off, and that there are lots of good people in the world (after having one of our canisters stolen out of a restaurant a few weeks ago.)

Other than that, it's been a pretty average, wonderful start to the season; lots of walks, running errands, going out for dinner at random odd times of the day to avoid crowds... all of which is so much more enjoyable when you can do it as a family!  I've been trying to get Lucy out of the house as much as I can on my own, which is a bit tricky now that she has a bigger stroller, we make sure to have all of her machines at the ready, and she herself is longer, heavier, and a bit more fragile.  Yesterday we went out and cut peonies in our front yard - simple, right?  Actually, it wasn't too terrible - just 4 trips in and out of the house to get her set up :)  We have yet to put a ramp on our porch, so things (Lucy included), essential things, must be brought out in several trips.  But I got it done, and Lucy got peonies for her room - they smell lovely!

Slapping the ants out :)

Sneaky little Bert with his photobomb.

Next up, as in starting tomorrow, is the Lucy's Hope for a Cure rummage sale, put on by the ever wonderful Marjorie and crew.  We are so blessed, and so grateful, to have a friend as tirelessly devoted to our cause as Marjorie is.  Her whole family is the bees knees!  And we would love to see you at the rummage sale, which runs from Wednesday through Friday - get the details here!  Half of the proceeds will go to the Gwendolyn Strong Foundation, and half will go to Lucy's addition fund.  Thank you to all who have donated, both items and time, to make this possible!

We are also counting down the days to our Links for Lucy golf event.  If you haven't registered to golf, or if you want to just come for the dinner and fun in the evening, there is still time!  Message me at bzahn84@charter.net for your registration forms.  There are still lots of slots open, and we are hoping to fill as many as possible for Lucy!

Toss in birthday planning that I was silly enough to leave until the month before the day, and I have a full plate!  We're keeping it low-key this year, because Miss Sassypants just gets herself all worked up the night before, doesn't sleep, and is then Miss Crabbypants the day of.  Hoping that a smaller party (and not telling her about it the day before!) will curb some of that.  I couldn't resist, though, and showed Lucy some of her birthday dress fabric:

I think she likes it.

That should have us all caught up!  I'm hoping to be able to update with lots of fun things over the summer.  After Lucy's events and birthday, we're looking forward to the 5th annual Par 4 Peyton, put on by Unite 4 Peyton - always a fun event!  Stay tuned :)

Teach Your Children

Now.  Teach them now; while they're still young, still without bias or social grace.  Teach them that not every child in the world is like them - and not only in mundane, expected ways like hair color or glasses - but vital, noticeable, drastic ways.  Ways that include feeding tubes and braces and alarms and machines.  Ways that mean not being able to move at all - or not being able to control spastic movement.  Ways that mean not being able to make a sound - or maybe making loud, nonverbal noises.

Now.  Teach them while you're in your living room.  Get a book from the library.  Find a way to incorporate it into their play.  Don't wait for the out-in-public starefest (remember the aforementioned lack of social grace?)  I know kids stare at all kinds of things, and I personally don't mind anyone coming up to us and asking about Lucy, and really much prefer it to the silent, questioning stare, but there are people who do not wish themselves or their children to be a learning experience, no matter how well-intentioned.  It's well within your ability to head it off and start discussing it now.

Now.  Teach them now.  Teach them before they run into my mostly sweet, mostly outgoing (she is only almost 4, there is still quite a bit of sass and caution there!) Lucy, and hide from her.  I understand that the machines and stroller - and DIFFERENCE - is all very big and very intimidating to a small child, but a parent talking to them about it, introducing the possibility into their forming mind, can make all the difference.  To them, and to Lucy.

I don't know if Lucy is hurt by it yet, or even realizes why some children are so scared.  Why they won't talk to her, refusing to acknowledge her smile or yell.  But I can tell you, I do realize.  And to be frank, I'm tired of it.  I understand they are children, and you can't make them act a certain way, or accept something - BELIEVE me, I understand! - but you have the power to make it a possibility.  It's possible that instead of hiding behind you, they will step forward.  Maybe instead of tugging on your arm to get away from Lucy, they will return the smile, as they stare at her.  Maybe your teaching them will make a difference.  To both of them.

Fan of the flowers

We've been fortunate to have some really beautiful weather lately, and Lucy has been doing well with tolerating the breezes on our walks.  Lots of reassuring her that we have all of her machines ready to go, and that we can see her face.  She gets a bit anxious if the sun starts to go too far down, but we're working on that too.  She's a real fighter :)

While Lucy has always enjoyed walks, and being outside, this year she's really getting into the flowers we see - particularly the lovely flowering trees.  She likes to wait for us to tell her one is coming, so she can point her eyes skyward to catch a glimpse from underneath.  She likes to stop and smell them.  Bushes, too - lilacs are blooming right now, and she loves them!  We found a little sprig on the ground on one of our weekend walks, and picked it up for Lucy.

Just the right size for carrying along home.

The next day, a friend came by to drop off their golf registration for Links for Lucy, and brought Lucy a whole mason jar full of lilacs!  They're in her room now, perfuming the air.

Bedtime sniffs.

Lucy has decided for her Make-a-Wish that she'd like a backyard makeover, with a play structure adapted to her needs, and some flowering trees, shrubs, and plants.  We've told our wish granter, and had to tell her that we need to wait until our home addition is done.  It makes no sense to go forward with anything now, since we don't know exactly how much space will be taken by the house, and I'd like for the play structure to have direct access to a patio, for ease of use with Lucy's stroller.

We have slowed to a stop with our online fundraising.  We are blessed to have friends who are holding rummage sales, selling handmade items, and sharing the link.  I'm asking those who haven't shared the link to our donation site - please, share it and help us reach new people.  Lucy would be over the moon to have her own little paradise right in her backyard, and we can't use her Wish until our home is complete.  Help us make this happen for her.

Thank you to those who continue to share our link frequently, donate, register to golf, donate items, and pray for us to meet our goal.  We are so grateful to each and every one of you!