Holiday Happenings

A lot has happened in the last two weeks in many families, ours included.  Here's a handful of the more memorable events.

The weekend before Christmas was our church's children's Christmas program.  Unfortunately, the snow on Saturday caused the final rehearsal to be cancelled for the youngest kids, and the traditional gingerbread event that follows this final practice was rescheduled for Sunday after church.  Thankfully, those who had speaking lines did a wonderful job on Sunday, and the kids who were singing were flexible enough to handle the performance well without the final run-through.

All three of our kids chose to be shepherds this year, since Matt (pictured above) was also acting as a shepherd for the performance.

They were very attentive and knew their songs by heart.

Anna also knew her songs and was probably the most flexible of the kids in terms of where she was going to sit/stand.  (Notice our congregation's OT with a tight grip on Anna's hand for balance?)

 Like I said, all involved did a wonderful job, especially considering the weather circumstances of the month.

The week leading up to Christmas was eventful in our home.  We had our typical Therapy Monday and then on Tuesday afternoon there was a sledding playdate with one of Ethan's friends while the girls were at school.

On Wednesday, Anna's school PT had invited Ethan and I to visit school for Anna's weekly PT session.  Anna and some friends had been working on a Christmas yoga routine to the tune of "The Twelve Days of Christmas".  Ethan and I went early to join Anna for lunch first, then participate in the yoga routine, and round out the visit with an exciting game of tag in the gym with Anna, her PT, and her friends.  Have we mentioned before that Anna has an amazing team at school?

After school on Wednesday, we went as a family to check out the trains at Olbrich Gardens before tackling the sledding hill across the street.  We all loved the trains and Lego display, and everyone (except for Anna) had a great time sledding until dusk.  Poor Anna just gets too cold too fast.

Thursday, the last day before winter break, was full of holiday excitement at school.  Ethan and I joined Kate and her class for a field trip to the ice arena at the start of the day.  (Really? A field trip on the day before break?)

The boy and I played a few games in the morning, and then played outside in the snow together before lunch.  Then he and I managed another playdate in the afternoon with some McFarland friends, which included a solid hour playing outside in the snow.  All three of our kids were tired and overstimulated by the end of the day.

Friday morning was low-key, but we had planned on doing some holiday events together as a family in the afternoon.  This year St. Nicolas brought us tickets to see the Nutcracker Ballet downtown at the Overture Center.  Ethan had been so excited for this all throughout December, even though he didn't really know what to expect.  At least we pulled out a CD with some of the Nutcracker music the week before the ballet so he was able to recognize some parts.

Here's Matt and the kids with their serious side and then their silly side.

We all enjoyed ourselves, but decided that ballets like this last just a little too long for us these days.  Kate, in particular, was visibly fading by the end.  Here's the kids and me with our sleepy side, and then our silly side.

While we were downtown, we stopped to see the Christmas tree in the Capitol.  The kids all wanted to initally, but no one was particularly excited about it while we were there.  The coolest part of the afternoon was that a beautiful fluffy snow was falling gently while we were downtown and everything looked picturesque.

We rounded out the evening with dinner at a restaurant other than Culver's, Cracker Barrel, or Red Robin.  Not very typical for our family, but definitely a worthwhile experience.

Then came Christmas Eve.  Matt took Ethan and Kate sledding in the morning while Anna and I prepped some final things for the coming days.  After the rest of the prep was completed, we were able to watch the last half or so of the Packer's game before getting ready for worship and having an early dinner of finger foods.  The Christmas Eve service was especially meaningful this year because all three of the kids recognized enough of the songs to be able to sing along for most of the service.

When we returned home, we continued our family tradition of giving one special gift on Christmas Eve

It took a lot of conscious effort with lots of reminders throughout the week on our part, but finally on Christmas Eve, Ethan was excited to give Kate her gift.

Anna needed no convincing to be happy to give Ethan his gift.

The garbage truck that she picked out for him from our local second hand kids' store was a highlight of Christmas Eve, Christmas morning again, and every day since :)

The various lego sets the kids received from each other, parents, and cousins have also been very, very entertaining.

My parents came on Monday morning to spend a couple of days celebrating with us.  Much food was eaten and many, many games were played during their visit.

And more legos were built, of course.  In our family, The Legos (of which we have many from my childhood in addition to ones our kids have received) only come out at certain times.  Illnesses, winter break, and peak canning season are the more notable ones.  This way The Legos chaos can be contained, and bringing them out is thought of as an exciting event :)

This time, Grandpa and Kate worked together to build an awesome monster truck.

Life is finally going to settle down for the next few days.  I'm hoping that everyone will have a chance to recharge before the school/work routine sets in once again.

Extended Christmas Letter

For those of you who have been reading this blog all along, feel free to skip past this post.  I wanted to provide a short summary of some of the more notable events of the year for those friends and family who are just checking in after receiving a Christmas card.

Overall, we had a good year for 2016.  We were able to do more activities together as a family than we have in recent years.  The kids have all grown, changed, and learned.  And Matt and I were able to keep engaged in our individual interests and hobbies while still growing together as a family.

In terms of family activities, we took a few trips, both small and large, this calendar year.  In late February we all needed to experience something different from the WI cold, so we spent a short weekend at Kalahari Resorts in WI Dells (Weekend getaway).  Then in March we spent a few days in Chicago visiting museums and acting like country folk in a big city (Chicago).  We also visited my parents' home for a few days of maple syrup season (Maple Syrup).  In April we celebrated Grandpa Boehm's 90th birthday with family in Iowa (Happy Birthday!).  We also participated in the Badger's Go Bald event again, this time as a whole family (Badgers Go Bald).

June was the month of our long family vacation to South Dakota (Vacation Reflection).  We visited Matt's parents in Chamberlain (Vacation Part 1), and then drove on to the Black Hills to experience some of the beauty and history of the land (Vacation Part 2, Vacation Part 3, Vacation Part 4).  We were also able to spend a day with the Needham family who traveled from Wyoming just to see us!  The Navurskis family came to see us in Madison for the Fourth of July (Fourth of July), so we were able to reconnect with all of Matt's family within a month's time.

Most of July revolved around Anna's intensive therapy program this summer.  Four hours a day, five days a week, for three weeks (CI Summer Camp).  It was well worth the time, effort, and energy, but the experience dictated a lot of how our days looked in July.

August brought many, many vegetables and even more fruit that needed preserving.  The work in those summer months always pays off about this time of year when the kids and I can go "shopping in the basement".  August also brought with it a trip for the kids and me up to my parents' home (Trip up North).  This was the longest time Matt was flying solo at home in several years!

The most notable event this fall for our family, besides the inevitability of school starting again (Back to School), was our family's involvement in the UW Badgers Brain Cancer Awareness Basketball Game.  Check out that post from October if you want to see some cool pictures of Anna presenting the game ball on center court, or of us meeting Coach Gard after the game (Brain Cancer Awareness Game).

The extended beautiful weather this fall was just what we needed before the cold winter weather set in again for Wisconsin.

The kids are all in a good place these days.  Anna is a 4th grader and still enjoys her experiences at school and therapy.  She does well with the academic parts of school, which is a testament to her hard work as well as her amazing team.  She has also developed some good friendships with classmates this school year, which is a testament to our wonderful community and that same amazing team of educators.  In general, Anna is a kind, thoughtful, hard-working kid.

2nd grader Kate was more hesitant about starting school this year than Anna, but mostly because she didn't want to lose out on her free time.  However, Kate found a group of friends early in the year that help make all of the work of school more enjoyable.  Kate's favorite leisure activity is reading, but playing imagination games follows close behind.  Kate still likes being active in whatever way she can, which usually involves the equipment in our basement.  In general, she is the creative, compassionate, free spirit in our home.

Ethan turned 4 in November and is home again with me.  He has a pleasant outlook on life, likes playing with just about anyone, and enjoys asking dozens of questions every day.  After the relative chaos of the past few years, I'm soaking up our time together before his schooling years begin.  Ethan is a strong, caring, goofy boy who doesn't like to be left behind his sisters for any reason.

Matt celebrated his 10th year at GE Healthcare this summer.  In addition to the regular engineering duties, he has become an active member of a Makers group, presenting several of his home projects at lunch meetings throughout the year.  Of course that means he has to keep tinkering and building at home so he can continue to have subjects for presentation.

At this time, I thoroughly enjoy being the general manager for our family of five.  Our garden and fruit trees did well again this past summer, providing us with plenty of delicious foods for the coming cold months.  We have a better balance to our life than we have had in a few years and that makes everything seem brighter and smoother.

It's taken us a few years, but we seem to have finally made it back to a place where we can do the kinds of things that we enjoy doing as a family, both in and out of our home.  Our lives are still a bit different from those with typically developing children, but we have found ways to make more and more of life feel normal.  Our faith has continued to sustain us during the difficult times, and given us extra reasons to rejoice in all circumstances.

Stay tuned for a longer post with medical and rehab updates about Anna.  I plan on getting one of those together someday soon!

That time of year ...

It's that time of year again ...

Time for kids to be getting sick.  Time for the weather to turn nasty cold.  Time for there to be all of the "extras" that come along with the month of December.

But it's also time for new memories to be made.  Traditions to be upheld.  Family to reconnect.  Our faith to be strengthened and celebrated.

Here's the sicknesses.  Kate had a GI bug last week, was out of school one day, and just felt under the weather for most of the week.  She recovered in time for the weekend, but now has a head cold, which apparently has been shared with her mother.

Here's the weather update.  We had another snow storm roll through Wisconsin last weekend dumping another 7-8 inches of snow.  Then on Tuesday the temperatures dropped to the single digits, with windchills below zero.  Tonight's temperatures are supposed to go even lower.  Another snowstorm is forecasted for this coming weekend, with another major drop in temperature early next week.  Winter is here.

So far we are skirting by some of the "extra" events in December.  There's still gifts to prepare, packages to mail, and food to bake.  But, we have opted out of certain activities so that we can still function on a relatively normal schedule.  This coming weekend is the big one for church, but that's about it.

As for new memories, Ethan and I had our first Mommy-Ethan sledding date on Monday afternoon.  Oh, my.  It was SO much fun.

We must have gone down the hill 15 or 20 times.  The poor guy was exhausted afterwards, but was also excited to be able to do it again sometime.

We took a break partway through to go see the indoor holiday train set-up across the street at Olbrich Gardens.  That excursion was also a hit.  However, given the option of a special treat indoors at Olbrich or a few more times sledding, Ethan chose sledding.  Way to go, Buddy :)

We haven't really done many "family traditions" yet this December, but I'm hoping to get the girls to see the trains at Olbrich still, and we will definitely find time to look at Christmas lights as a family.  We have managed to watch a few of the kids' favorite VeggieTales Christmas episodes.  Perhaps that can be called a tradition in itself?

The girls have just over a week of school left, both with field trips to the ice rink and classroom holiday parties.  Hopefully, the homework will be kept to a minimum and everyone's health and energy will stay strong until we get to winter break!

Moments from the past week

I didn't get the camera out at all last week.  Perhaps that's an indication of the type of week it was, or perhaps it's just because I chose to spend time with people instead of taking pictures.  Either way, no pictures.  Maybe next week.

Tuesday and Wednesday last week were spent recovering from the excitement of the previous weekend.  We tried to get everyone in bed early, but it didn't always work quite as planned.  In addition to the kids dealing with the transition back to a school week routine, there was a bit of food stuff to be done.  Ethan and I spent a lot of Wednesday in the kitchen and dining room.

Thursday was an appointment day for Anna.  She has a handful of appointments that are scheduled every 6 or 12 months.  This time around we clumped them all on one day instead of having them spread out over the course of a few weeks.  It was nice to get them all out of the way, but it was a long, relatively stressful day.

I'd been planning for the day for Anna and Ethan for a month or so, and even had after school plans for Kate in place.  But then on Wednesday morning I had the realization that Kate didn't have a way to get to school on Thursday.  Oops!  The other two kids and I needed to leave at 7:15 and Matt has an early meeting most Thursdays which means he leaves the house at 6:30.  Luckily, we have a few neighbors who were willing and able to drive Kate in to school on Thursday.  Crisis averted!

The appointments all went pretty well.  One of these days I'll give a medical/therapy update about Anna and include all the information in one post.  This day just isn't that day.

To complicate the emotions of the day, the Make-A-Wish radioathon was scheduled for Thursday and Friday.  We never got word when Anna's story was going to be shared, so we just tuned in to Z104 whenever we happened to be near a radio.  That meant that we heard a lot of other kids' wish stories, too.  In addition to our bodies and brains being tired from the day, our hearts were, too.

It just so happened that when Anna and I were in the van again after the last appointment of the day on our way to pick up Ethan, we heard her story introduced.  A quick call to Matt made sure that he was able to listen to it as well.  Whoever put together the clip did a nice job of capturing Anna's story and a little bit of our family :)

Kate was a little bummed that she didn't get to hear it; Ethan didn't really know any different.  But then, on Friday morning when I pulled the van out of the garage before loading everyone up, they started playing her story again.  This time, we were able to listen to the sharing of Anna's wish story as a whole family.  I'm glad it worked out that way.

A couple of times over the weekend, different people commented to us how they had heard us on the radio.  The Make-A-Wish organization does a really nice job, but we realized afresh through the radioathon that although our wish was very cool and very memorable, it didn't play as big of a role in Anna's treatment as it does for other kids.

Friday Ethan and I stayed home to decorate for Christmas.  It ended up taking a lot longer than I was planning because our tree needed a little work with its lights before it would look presentable.  However, by Friday when everyone came home, things were far enough along for our home to finally look like it had some holiday cheer :)

The week ended with a bit more stress when I discovered on Friday late afternoon that one of our freezers had stopped working.  Yikes!  We didn't have any meat stored in that one, but most of our veggies hang out in the big freezer ever since we bought it used 10 or so years ago.  They were already well on their way to thawing.  Luckily, our next-door neighbors had some space in their freezer, and we had some extra space in our smaller chest freezer and the one in the kitchen.  Between those spaces, we got almost everything into a freezer before dinner on Friday.  The rest went into a cooler outside since it was supposed to be plenty cool that night.

Saturday involved the purchase of a new freezer for our family, as well as hauling the old one up the stairs and out to the truck.  Such is the life of home-owners, right?

And then on Sunday we woke up to snow!  The only prediction we had heard was a chance for 1-3 inches of snow maybe on Sunday night.  But it snowed all day on Sunday and we ended up with almost 6 inches!  We headed outdoors as a family after the Packers game in the afternoon.  Anna lasted about 30 minutes and the others stayed our for over an hour.  Then Ethan and I played together outside again this afternoon.  The first snow of the season is always fun, especially if it's such a surprise!

We're still gearing up for the holidays here.  I'm not sure that we're going to throw in as many "extras" as we have done in the past.  The kids really seem to need their time in the late afternoons and evenings these days.

My goal is to include some pictures next week!

Happy Birthday, Ethan!

Mr. Ethan turned 4 on Sunday, November 27.

This boy continues to bring joy to many people throughout his days.  He is kind, caring, inquisitive, and pretty content.  He still loves to play with his vehicles, but he seems to be branching out into different ways to play.  In fact, he has followed his sisters lead in obsessing about Perler beads.  His favorite things to make are jets.
 

While we were still up at the Colba's for Thanksgiving, Ethan received his birthday gift from his grandparents.  Not only does Ethan have a new catapult truck, but he also was able to help Grandpa put it together in his workshop.  I think both grandfather and grandson considered this a very special memory.

Sunday morning arrived with much celebration.  Cards, gifts, breakfast french toast, singing, finding 4s, etc.  Ethan has been counting down his sleeps until his birthday for several weeks now.

We worshiped at church before having Ethan's chosen birthday foods: macaroni and cheese and chicken nuggets.  He's certainly a typical kid in some respects.

Instead of asking for one of our family favorites for dessert, he wanted to pick out a cookies and cream pie at the grocery store.  Not only was it less work for mom, but everyone considers these treats extra special nowadays :)

After lunch, we surprised the kids with a birthday trip up to the Dells (in lieu of a birthday party) to help Ethan celebrate his big milestone.  Plus, we had a bit of money left on our gift card from last year and decided this would be a perfect opportunity to use it :)

The Kalahari was already decked out for the Christmas season.

And our kids were thrilled to have a fun mini-vacation, especially since they didn't have school on Monday.

Ethan decided that we should play in the theme park before going into the waterpark.  We attempted our family's first adventure with miniature golf.  Ethan enjoyed himself, but I'm not sure how much the rest of us did.

It took our family a L-O-N-G time to get through each hole.

Anna tried standing to hit the balls, but we learned that sitting was easier and faster for her.

Needless to say, we didn't keep score :)

Ethan also wanted to participate in the bumper boats.

Unfortunately, even though Ethan is 4 years old, he's not quite 42" tall so he wasn't able to do the go-karts.  But the girls did, and they had fun.

After a quick dinner in our room, we headed down to the water park for a couple of hours.  We spent our whole time on Sunday evening in the wave pool/beach area as well as in the mid-sized waterslide space.  Matt and I carried Anna up a few times so she could go down the mid-sized waterslides.  Ethan just kept going up, sliding down, going up, sliding down, going up, sliding down, ...  We ended our evening in the hot tub before heading up to our room for an attempt at a restful night's sleep.

Monday morning we enjoyed breakfast at Cracker Barrel before getting packed up and ready to tackle the water park one more time.  Since we hadn't done any of the tall waterslides the night before, we made sure to go down those.  I think between Matt and I, Anna was carried up to the top half a dozen times so she could ride the rafts down.  Our bodies were sore by the end of the day.

Two hours later we had played in the pool, done some mid-sized water slides again, and gone down the tall waterslides as much as our legs could handle.  The grumpiness of our kids later in the day was worth all of the smiles on their faces during our 24 hours at the Kalahari.  This was probably the perfect way to celebrate Ethan's birthday this year.

Prayers for Ethan

Thanksgving
Please give thanks that Ethan is a happy, healthy, typically developing 4 year old.
Please thank God that our family is blessed to spend time with Ethan every day.
Please give thanks for all of Ethan's attributes and their affect on the rest of us.

Requests
Please ask God to continue maturing the faith that is already growing in his heart.
Please pray that God continues to give us wisdom and strength as we continue to develop our parent relationship with him.
Please ask God to continue to shine through Ethan's life to those around him.

Happy Thanksgiving!

Thanksgiving this year was more traditional than it has been in years for our family.
 

On Thursday morning we journeyed up to my parents' home to join them, Adam and Jess, Jess' parents, and Tanqi, the dog, for the holiday festivities.  Adam, Jess, and her family DROVE from Colorado this year to spent the time in Wisconsin.

While we were all sitting around the table, Adam and I realized that we had never celebrated Thanksgiving in Augusta together!

And who knows when we will all be together like this again, since Jess is due in February with the next Colba grandbaby :)

The 36 or so hours away from home for this holiday went very well for our little family.  Uneventful drives, delicious food, and great company made for a memorable few days.  Of course we all had the opportunity to take walks in the woods, enjoy Gator rides with Grandpa, and play with toys or games with Grandma.

This year our family stayed in a nice motel up the road from my parents' home.  It was a different experience for the kids not sleeping over at Grandma and Grandpa's, but the idea of eight adults, three kids, and one dog all sleeping under one roof was a little much for us :)

Last week during dinner one night, we had the kids come up with things for which they are thankful.  Here's a few of the more noteworthy ones, with some of ours included as well.

* Good, safe schools to attend every day (Anna)
* Family and friends (Kate)
* Toys (Ethan)
* A secure job with good insurance
* Home appliances like refrigerators, dish washers, washing machines, etc.
* God
* Our home
* Indoor plumbing
* Fun and hard-working therapists
* ipads
* Assistive technology like wheelchairs and walkers
* Anything that grows
* Our church

Now we're gearing up for the little man's birthday and the season of Advent.  Hooray!

A better, but busy, week

Last week was a better one in our family, except maybe for Matt.  He ended up with a nasty cough that is still lingering.  Bummer.  But he has still been able to go mountain biking in the evenings once a week, in spite of the early darkness.  Biking through the woods at night would not be my choice activity, but Matt really enjoys it, as long as he has plenty of back-up lights along.

Ethan's stitches came out on Monday and the scab finally came off on Thursday or Friday.  We are just trying our best now to remember to have him wear a hat when he's outside.  The doctor said that the best way to prevent a lasting scar from this cut is to keep the new skin protected from the sun as much as possible.

Tuesday was an eventful day, although completely unrelated to the election.  Our family was invited this year to be interviewed for the Make-a-Wish-Wisconsin radioathon.  (We were asked last year, too, but Anna had already missed quite a bit of school due to doctor's appointments by December so we turned them down at the time.)  Instead of participating in the live interviews during the fund raiser hosted by Z104 on December 1-2, we were interviewed ahead of time for a pre-recorded montage.  We ended up at the radio station on the afternoon of election day.  How's that for timing? :)

Wednesday was Kate's parent-teacher conference.  Since last winter, we decided that it's easiest now for us to just bring the kids along and have them sit in the hallway with books or other activities.  Maybe not the best use of everyone's time, but it takes a lot less coordination than trying to find someone to watch them.

As we suspected, Kate is doing great in school again this year.  She does very well academically and socially.  She is continuing to grow with her confidence and potential leadership skills.  The more confidence she gains and shows, the more other kids look to her.  Looking back to her fall kindergarten conference, Miss Kate has come a long, long way.

Wednesday was also an eventful day because the field behind our yard was finally harvested!  We have been waiting, and waiting, and waiting for this day to come.  My parents happened to be driving through town that day and had taken Ethan and I out to lunch.  When we got home, we recognized the sound of the tractor out back right away.  Ethan and Grandpa watched the combine and tractor for a good portion of the afternoon.

Ethan has told me more than once this week, "Grandpa knows a lot about combines."

Kate and Ethan were able to explore out in the field with a neighbor one evening last week and then we made the trek out back as a family on Saturday.

Since the farmers grew beans this year instead of corn, the stubble is much lower and so Anna can drive the go-kart from island to island.  Hooray for modified family events!

The afternoon adventure proved to be fun, as it is every year.

Other than that, we are still plugging along here.  We are trying to get geared up for the celebrations and holidays in the coming weeks, but the weather up here is making that a bit tricky.  We still haven't had a real cold snap.  I finally pulled up the peppers and trimmed back the raspberry bushes, but our broccoli plants are still producing enough side shoots to give us a meal's worth about once a week.  The grass is still green and some of the fruit trees even have leaves on them still.  Crazy Wisconsin weather!

Rough week

Last week turned into a rough week in our house.  I'm guessing that ours wasn't the only household that had issues with Halloween and trick-or-treating falling on a Monday night, but ours went a little beyond the Halloween hangover.

Like I said last week, Tuesday morning was rough in our house.  Then Ethan fell out of bed on Tuesday night.  Or at least we think he did.  We're not quite sure how far up the ladder he was before we heard the "thump" and then crying.

Wednesday morning was even more challenging than Tuesday.  But the time the girls made it to school, I already had more laundry to complete that day than was originally planned ... one child's pajamas and bedding (which I had JUST washed on Monday) and another child's pants.

And then the real excitement began.  While Ethan and I were playing at an open gym hosted by the school district, Ethan fell and hit his head on a door hinge.  I scooped him up and saw blood.  Crap.  We hustled into the nurse's office and soon realized that our day was going to include a trip to Urgent Care, most likely for stitches.

Before moving on, here's a few facts about Ethan.

1) He does NOT like blood.
2) He does NOT like the idea of going to a doctor when he is hurt.
3) He does NOT like getting attention when he is hurt.

Our time in the nurse's office at school was tough.  Ethan was very loud, very strong, and very vocal about wanting to go home.  My body was sore for a few days after the effort required to restrain him in order to prevent him from getting hurt any more.

But, by the time we made it into our van and were able to deal with things as we know how, he was fine.  He still didn't want to go to the doctor's office, but I started using some of the skills and techniques that I learned from the best Child Life Specialists a few years back.  We calmly talked about what might happen, we discovered that I had randomly put an ipad in our bag so we could have videos to distract us at the doctor's office in addition to the books we borrowed from school, and we made a plan to pick up lunch from Culver's on the way home as a treat.

Ethan had a few more tears on our way back to the exam room, but then we was SO brave.  In the end, our boy received five stitches on his forehead and I had some bloody clothes to add to my laundry pile for the day.

Here's a shot of the stitches just before they were removed on Monday, first with a goofy face.

Then with a sweet face.

Seriously, though, Ethan is not a clumsy or reckless kid.  I've been taking my kids to this open gym since Anna was 3 and NOTHING like this has ever happened to any kid when I've been there.  It was just "one of those things".

And ... skin heals really fast.  Faster than muscles, faster than bones, faster than the brain.  A few stitches is not a big deal in the grand scheme of things.  Actually, Ethan was back to normal as soon as his belly was filled with a tasty cheeseburger and some fries.  It wasn't even too hard to keep him from doing anything crazy for a few days.

"No forward rolls, Ethan."
"Okay."
"No lycra swing, Ethan."
"Okay."

If the stitches were our only incident of the week, we would have been fine.  But then the girls also had colds.  Nothing too nasty, but sickish kids just throws off our life's delicate balance.  Kate was checked out on Tuesday afternoon and then again on Wednesday.  Anna threw up more than she has done in ages, and she had more tantrums than she has had in quite awhile, too.

We ended up having a big family meeting on Sunday and are going to try to tackle some of the behaviors that have been creeping back into life recently, not just from Anna, but from all of us.  It seems like we need to have a meeting like this a few times every year.  Let's hope it works!

But ... there was some good in the midst of the week, too.  Matt came home a little early on Friday and we made Mischnick Pizza together for dinner.  Then the kids had plenty of free time on Saturday morning while Matt and I accomplished a whole list of fall clean-up chores.  Sometime in the afternoon we decided to invite some friends over for dinner and a campfire because ... why not?  The evening temperatures were predicted to be in the 60s still, we didn't have to worry about getting up early because of daylight savings time, and we thought it'd be fun.  I mean, how often do we get weather like this in November in Wisconsin?!

Sunday afternoon Matt took Anna and Ethan to the wheelchair park while I took Kate on a hike in the UW Arboretum.  We had invited one of Kate's classmates along, but she, unfortunately, was out of town.

Kate and I had a great time anyway.  This girl has such energy and such interest in the world around her.

She really wanted me to take some pictures of the fungus we found :)

In between moments of stopping to look at mushrooms, she skipped and/or ran for the first half mile or so.

Then we were brave enough to head through the tunnel that goes under the Beltline Highway which connects the two sections of the Arboretum.

Our snacks gave us an added boost of energy, but Kate spied a bench right when we both needed it.

An hour and a half of fresh air, sunshine, and hiking made for a tired Kate at the end of the day.  I can't remember the last time she was actually asleep at 8:00!  Granted, this was the weekend we changed the clocks, but it was still surprising.

We are hoping this glorious weather holds out a little bit longer; it really has been an awesome fall once we got past all that rain in September.  And we are hoping that this coming week involves much less trauma and drama than the last.

Please pray that Ethan's cut continues to heal completely, that we find ways to help Kate release some of her energy this winter, and that Anna continues to find ways to deal with her life as it is.

Brain Cancer Awareness Game

On Sunday we attended a Badgers basketball exhibition game in which the UW Badgers played against the UW Platteville Pioneers at the Kohl Center on campus.  Not only were we able to attend the game courtesy of the UW Athletic Department, but Anna presented the game ball prior to the game starting ... and we met the coaches and players after the game outside of the locker room for autographs and photos.

Really?  Really.

It all started about a week and a half ago when we received a phone call from someone at our church (who we don't really know, but, honestly, everyone at our church knows about us).  She had heard about an upcoming Badgers game and took it upon herself to contact the UW Athletic Department to see if she could get Anna invited to the game and somehow be involved in it.

At first Matt and I were not sure this was something we wanted to do.  We don't go around seeking to be in the spotlight.  In fact, most weekends we would rather hole up in our home or only interact with those who know us.  Plus, we didn't know quite what was involved; the phrase "poster child" had been used at some point and we didn't know exactly what that meant.  And finally, although we live in Madison, we know of plenty of others in this town who are bigger Badger fans than we are.

We also worry about how this kind of event might affect our kids in the long run, especially Anna.  We work hard to help our kids understand that the world does NOT revolve around them.  Perhaps you can understand why we were a little hesitant about having Anna present the game ball at a UW Men's Basketball Game.

In addition to the larger parenting concerns, we knew the game would be on a Sunday after church and Sunday School in a situation completely unfamiliar to any of our kids.  Historically, certain members of our family don't do well in new, high-sensory environments.

But then we did a little research about the game itself.  Here's a great article that explains the history behind this particular game: Gard vs. Gard Exhibition Way More Than Just Basketball.  Basically, the coaches of the competing teams, who are also brothers, wanted to raise awareness of brain cancer due to their father's diagnosis and death from the disease last October.  The game turned into the Brain Cancer Awareness Game, with high involvement from the Carbone Cancer Center at the University of Wisconsin Hospital and Clinics.

We also did some hard thinking.  Whether or not we like to admit it, there are many things our family is not able to do together because of Anna's disability.  This was something we could do together and we would probably make some good memories, too.

The Monday before the game we called the Assistant Athletic Director of Marketing and Promotions to let him know we would attend and Anna would participate in the presentation of the game ball.  Our main tasks in preparation for the game were figuring out where we would park, finding some good, updated Badgers gear, and making sure Anna knew how to hold a basketball on her lap while wheeling herself around.

Then on Monday afternoon we received a call from the Child Life services at the hospital, offering us a set of four complimentary tickets to the game.  We let them know they could pass those tickets along to another family since we were already involved in the game :)

Later in the week, we received an email from our contact in the athletic department with a draft of the PA announcement as well as this little gem, "Also, the Badgers head coach, Coach Gard heard that your family was attending the game.  He extended an invite to meet up with him after the game by the locker room if you are interested for photos and autographs."

Really?  Really.

On Sunday we managed to find a relatively decent parking space, got our tickets from will call, made it through security, and found our seats with a few minutes to spare.

We also learned that we were sitting close by another family who we have gotten to know through BCCN events, as well as Anna's school.  Anna's P.E. teacher's daughter was diagnosed with leukemia four years ago and finished up her treatment just before Anna started third grade.  It turns out they also received complimentary tickets to the game and were invited down to center court during half time.

Soon our escort for the day's events arrived and we left with her to make our way to the first level.  We worked our way around and around the behind the scenes of the Kohl Center to get to just the right spot at just the right time.

And then, there was this,

and this,

while Anna was introduced over the loud speaker and on the big screen.  Pretty cool stuff.

Once we survived this portion of the day, we were escorted back to our seats to watch the game.

At this point we had the realization that our kids know very little about basketball.

Ethan: "The players don't fall down a lot.  They must not get hurt like they do in football.  Do they get hurt, Mom?"
Kate: "What was that sound for?  Why did the buzzer go off again?  How many points do they get for that basket?  What about that one?"
Anna: "I bet the scores of basketball games are a lot higher than those of football games."

The kids also got a kick out of Ethan Happ, #22, because his name is Ethan, of course.  Kate and Ethan were very conscious of when #22 came into the game.

Overall, the kids did great.  Matt reminded me of our baseline expectation for days like this when he said towards the end of the day, "Hey!  No one melted down!"  That's a pretty sweet deal on a day like this.

The Pioneers of Platteville held their own for the first half and were only down by about 10 at halftime.  But then the Badgers really took control.  Our kids got to see plenty of three-pointers as well as a few dunks.  Here's an article summarizing the game, with the coaches' reactions, too, in the video section: Men's Basketball Opening Emphasis.

After the game we waited for our escort to arrive once again and she led us down to the first floor and presented each kid with a signature basketball.

We realized when we passed the "No media beyond this point" sign that this was a pretty exclusive hallway.  While we were waiting, we recognized a couple of Madison's other "medulloblastoma kids", one of whom was on P4 a lot when Anna was.

Then Coach Gard came out.

What a nice guy.  He must have talked with Anna for at least five minutes, then with the rest of us for a bit longer.  Good quotes from our kids during this time are as follows:

Coach Gard: So do you like the Badgers?
Anna: Well, we're more of Packers fans, but I like it when Bucky comes to my school.

Coach Gard: What sports to you like, Ethan?
Ethan: Um ... Bowling.

Finally he said something like, "I guess I'd better go talk to the media", but made sure to instruct the others on staff to direct the players to sign our basketballs and the programs/t-shirts of the other kids.

Then, one by one all (except one) of the UW Men's Basketball 2016-2017 players came out and signed the basketballs.

Really?  Really.

Some of the guys chatted and were more friendly than others, but they were all very polite.

In the end, did we have a good time?  Yep.
Do we think we deserved it?  Nope.
Are there plenty of other kids who could have been in Anna's place?  Yep.
Are we grateful for the opportunity we had?  Of course.

Still, it's always humbling to remember what has brought us to this point and the lengths to which people will go to bring some extra joy into Anna's life.