Christmas Crazy

Is your house Christmas crazy? How do you know for sure?

Well, when you're putting your 6 year old to bed and they say,

"Do you know I've had on the same underwear and socks for 3 days because you haven't given us a bath?"

Yup, my friends, that is Christmas crazy.

This always seems to happen at some point.  I'm not sure why it is, but December events seem to happen in avalanche fashion... flurry, flurry, flake, then whoosh!! Then silence for awhile until the next one.  Why does all the fun stuff have to happen in the same week?!  And is anyone else taken aback by the insane number of dishes they are preparing, covering with foil and plastic wrap, as they run out the door? Or most recently trying to keep the lid on a crock pot of hot soup with rubber bands from my asparagus bunches? Do I get points for innovation? It is definitely the eating season!

But also the time to share the nativity story and carols with our kids...

We try really hard not to over-commit during Christmas, but there are certain events that we all really look forward to that add a lot of meaning to this time of year.

We plan out our calendar in November for advent.  It has become one of the kids' most anticipated times.  We decide what we want to do and try to divide every activity into it's own day. Sometimes plans change and things don't get done, but I have found it really helps to only try and do one thing at a time (most days!) instead of cramming it all in at once. It does happen some weeks that we are crazy busy, but in a fun way.  I have learned to let the non- essential stuff go, so we can take time to have fun together and to celebrate Christmas our way. That means sometimes skipping baths, eating on the go, not folding the laundry, or letting the house be a mess for few days.

At some point we have to stop and take a family Christmas picture.
 
Does anyone else dread this? Why is it that every year you want to strangle one of your kids by the end? They definitely realize the pressure in this one and capitalize on the moment.
.
In the end though, it is always worth it. And in a pinch, the assortment from the cookie exchange the night before makes a really fun breakfast buffet when you're in a hurry.  The kids couldn't believe we were eating cookies for breakfast! Tis' the season for fun and surprises :)

I am happy to say, we have even had time for some adult night outs to visit friends at Christmas parties. So blessed to have friends to swap babysitting with! It has been a hectic week and the carnage around here is evident.  The front porch is half decorated with garland and lights.  We tried to do it last weekend, but most of the lights were out- of course.  Unfortunately, I must confess, the box, garland, and pieces of light strands that were hacked with scissors are all over our front porch... still!

But the fun we have had with our family and friends and the chance to do some outreach makes it all worth it.  I don't ever want to become too busy with the mundane and self-focused tasks of life that we miss out on the God-moments presented to us.  This is true everyday, but especially at Christmas.  We had one of these moments last week.  It had been a busy day of appointments and fun.  It's a long story, but we ended up with three plates of hot food in our car.  As the kids and I talked about it, we decided we were supposed to give it to the homeless we see in our daily paths.  So we did.  The kids were thrilled to be giving them hot food on a cold day and I think it is really sinking in to their minds and hearts what it means to be 'homeless'. This is something we will continue to do, especially this winter. 

One of the sweetest moments we had this past Sunday.  Julia's worship dance class performed at a local nursing home. It is the first time we have seen her perform.  They were so precious and did an amazing job worshiping through music- dancing to "Joseph's Lullaby"- and sharing God's love with some excited residents there.

 These moments of heart growth are worth every rushed afternoon, every meal made in a hurry, every late night of washing tights...

 God's precious little girls pretending to rock His Son...

 ...and give Him the glory!

So for now, the craziness continues, but the joy remains at the center. And we're having fun getting things done.  The kids rigged up an elaborate system of delivering Christmas cards to the mailbox and loved it, despite the frigid temps!

Tuesday night, we enjoyed a fun dinner with friends and then headed out to MaxieBs for their annual Christmas Open House.  The entire bakery- kitchens and all- was open to the public. The kids started by making their own cupcake creations...

Then we watched the pros do it as they assembled four special order cakes- wow!

Then it was time to taste! The place was overflowing with cookies, cupcakes, brownies, and hot drinks.  Everything was free and the supplies seemed bottomless.  It was a dessert lover's paradise.

With our bellies full we headed to Sunset Hills to drive through the light displays.  The whole neighborhood hangs lit balls from the tops of their trees. It is like walking into a storybook- just magical. 

Then we stopped to visit the nativity display at a local college.  The wind chill was 4 degrees and it was painfully cold, but we have sweet memories of all the kids racing across the lawn to catch a glimpse of baby Jesus and pause for a moment to take it all in. 

Because that is the essence of Christmas.  The simple gift of saving grace.  The story that touches our hearts and changes our lives forever.

And yes, sadly we realized Carter was right, the kids had not had a bath in 3 days, but sleep trumps bathing every time.  The crazy part was I had to throw them in Tuesday morning because we didn't have another open time slot for baths until Thursday night :) 

Malia

Precious Malia was called home to heaven this morning at 7:15am.  She died peacefully in her sleep at home and is now completely free from this horrible thing called cancer.  God has completely healed and restored her. she can now dance with all the other Wilms' angels in heaven in the presence of her precious Savior. 

Christmas is Coming

The month of December always sneaks up on me and this year was no different.  Julia's medical issues this past week put all our advent planning and activities to a halt.  After our trip to Brenner's on Friday, we were very excited to have a weekend full of festive fun!

We started off with Toys for Tots.  This charity has been a part of my life ever since I was little.  Our family has always picked out toys to donate and the tradition continues with our kids.  I love to take the kids shopping and see all the thought and care they put into choosing just the right toys.  Then we headed to the drop off site.

...in full uniform of course.  Carter has to have his uniform and all his gear ready the night before we go.  Any chance he gets to spend with the Marines, he is thrilled.

They were impressed by the humvee, too...

It was a fun afternoon and the perfect way to kickoff Christmas in our family.  That night was the Festival of Lights downtown.  They put on a fun, free night of musicians, food, crafts, art, and fun.

The highlight of the evening is the tree lighting.  They turn off all the lights in the area and as we stood in quiet, darkness- the crowd of thousands sang all the verses of Silent Night.  I love that we live in a city that keeps Christ in Christmas!

It was a chilly, but beautiful night.

The next morning was the annual Christmas parade.  We donned as many layers as we could fit, packed our food and goodies, and met our friends for the festivities.

They have amazing balloons, bands, and floats.

I love to watch the kids faces, almost more than the parade itself.  What's that coming down the street?!?

It's One Fish, Two Fish, Red Fish, Blue Fish!!

Soon after the start, as if it had been choreographed, it actual began to SNOW!

The gently falling, fluffy flakes were magical and quickly attracting eager little tongues...

It just kept coming down.  Before we knew it, this was obviously more than just a few flurries.  The babies were such good sports.

Julia was thrilled when Babe (from the Grasshoppers baseball team) came strolling down the parade route with her bat...

Is this NYC or GSO?!? Oh my!!

By the end we had a few inches on the ground already. 

We decided it was time to head home and warm up by the fireplace.  It was a great afternoon to decorate the tree.

Julia loved all the ornaments, especially the dogs.  She plays with them daily.  I love to here her standing in front of the tree making all the ornaments talk to each other :)

On Sunday, we decorated a gingerbread house.  Carter was very meticulous about following the picture in our design.  They did a good job working together and actually eat very little of it the older they get.

Every time I look at this sweet face these days, it takes my breath away to see the curls, eyebrows, and eyelashes.  It is a such a simple thing that I will never take for granted.  When people comment on her curls, we like to tell them cancer took her curls, but God kept them safe for her.

I love the advent season- sharing the many traditions that walk through the anticipation, prophecy, and arrival of Jesus.  Every Sunday night when we do our advent devotion, we light our candles and eat dinner by candlelight.  It touches my heart to see all the ways the kids are putting the pieces of the Bible together.  It wasn't until well into adulthood that I studied the Bible as one complete work and analyzed all the pieces from Genesis forward that point directly the Christ's birth.  To think my kids are already making these connections is humbling and inspiring.

Prayers for Malia

Malia is a spunky nine year old girl who loves art, her friends, her sisters, her family, and her Jesus.

 

She has been fighting Wilms tumor kidney cancer since October 2009.  She has had numerous surgeries, chemos, radiation, and other treatments.  Unfortunately medicine has failed Malia, but her God has never left her.

As the rest of us are busy preparing our homes and families for Christmas, Malia is preparing to meet her Savior.  She is ready, but her days and nights are very hard.  Please pray for Malia's journey, for her parents, and her two sisters.  Pray that God's loving arms are carrying each one of them.

Planning Day at Brenners'

Ya'll should be proud.

I didn't have to make a scene today at the hospital.  We headed in this morning and started with a pitstop in the oncology clinic.

I guess I need to back up a little further.

After Julia's repeat UTI incident earlier this week, the ante was raised yet again to make something happen as soon as possible.  Apparently my call to Dr. Fortunato's nurse last month for a reality check put some sort of urgent flag on Julia's chart.  When the endoscope clinic turned the page to their 2011 calendar we were one of the first people on the schedule.  Julia is slotted to be admitted to the hospital on January 10th. We also found out this procedure is way more than we anticipated.

Julia will be admitted for a week.  We begin Monday with starting all the lines- IV, cath, NG tube, etc. Then proceed to scans and tests.  They will also start a 48 hour "go lite" full system flush on her.  After an evening and morning of NPO, she will then go into the OR on Wednesday to have all the colonic monitoring lines and equipment put into place.  She will then have to lay immobilized for the next 24 hours.  If the readings are successful she will be discharged sometime in the evening on Thursday.

We had no idea this was a week long process, so that explains some of the difficulty in scheduling.  As it turns out this admission overlaps with her next oncology clinic appointment and scan day.  So pour JuJu is now going in for the full overhaul.  In an attempt to streamline the testing, minimize the trauma to Julia, and please the insurance company, we are going to try to compile everyone's wishlists into one grand plan.  Poor JuJu is getting "the works".  It will be amazing if it all comes together.

So back to today.  We started in the oncology clinic to get their list: CBC w/diff, CMP, abdominal ultrasound, chest CT,  and urinalysis.  Then we headed to the peds clinic to see Dr. Fortunato.  The poor guy.  If I had any doubt that things were as crazy as his nurse said they were, he was the poster child for her case.  I don't think he had slept, showered, or shaved in several days.  We got right down to business and he agrees this is the next step.  He was worried I would be resistant, but after almost two years of this, we are ready for action.  My one requirement was that she be put on prophylactic bactrim during this interim period.  It doesn't take a doctor to figure out that her UTIs run in 30 day cycles which would put us back in the ER roughly around Christmas Eve.  With our track record that would be right on par, but we are breaking the mold this year and wish to spend our holidays at home and not in the ER.  I think the docs and nurses are just charming and fabulous, but we have used up way more than our allotted turns.

He agreed on the bactrim, but wants Dr. Hodges (urology) to prescribe it.  He said that's not his part on the team.  I totally respect that.  He then took the list from oncology and said they would make it happen.  His nurse was on the phone with the other departments before we even got out the door. In the end it may mean she stays a little longer in the hospital, but once all the lines are in I would rather she just get everything done.  Her CTs will require IV and I'd rather she not have to repeat that a few days later.  It also makes much more insurance sense.  Once her $200 admission is paid everything is covered.  If we go back in for a CT scan, we pay $200 again.  I really appreciate that the doctors care about these things.

Once the tests are complete, Dr. Fortunato will decide which surgery she needs and it will be scheduled likely the following week.  At this point he is leaning toward a cecostomy tube (as is Dr. Hodges).  He said he hates that he has to do this to her, but he feels like we have given her body all the time and grace we can and unfortunately the problems have crossed the line.  We are feeling complete peace about everything.  I know the week in the hospital will be a doozy, but we have exhausted all our other options at this point.  Right now I am actually thankful that we have until January.  We have a full calendar of Christmas activities and fun with our friends, family, church, and hospital.  We plan to travel to PA for several weeks with the family before we come back to the hospital.  We are looking forward to a healthy and full Christmas.  Dr. Hodges nurse called back to tell us she will be on bactrim for the next year to prevent UTIs.  Now that we have covered that base, we feel much more comfortable with waiting a few more weeks.

We have started to talk with Julia about what will happen in January.  I'm trying to stick to the basics right now.  I don't want her to have to dwell on it over Christmas.  She has had a few questions and seems satisfied with the answers.  Today while we were waiting in the exam room, she was intrigued by the diagram on the wall.  We have no explored the entire digestion process and all the organs in the abdomen.  Really makes you think about eating in a whole new light.

We were thankful to be leaving after such a short visit and excited about a day full of Christmas events ahead of us.  As we walked out, we went out a door we rarely ever use.  The parking garages were so full we had to park near the roof.  As we went out the doors, admiring the helicopters on the landing pad, I turned and was surprised to see Vinny and Sarah on their way in. I love when God does that! This is the very same spot were we ran into Nicholas and his family when we were both discharged surprisingly early from sick admits!

Vinny was heading in for another day of chemo, unfortunately Sarah also had to conference with Dr. McLean today.  It was discovered last week that Vinny has relapsed on treatment again.  His lung tumor is continuing to grow and has invaded his pulmonary arteries.  I can't even bear to think that this precious friend of ours is running out of medical options.  We are so blessed for the past year he has been given.  After relapsing in November 2009, he was given 2 months to live.  But Vinny's body does not follow the rules.  Never has.  He has endured intense treatments, severe side effects and complications, and has been put on and taken off hospice, yet he continues to fight back.  God has been very good.

We were just thrilled to see them and get a chance for a real life hug.  Sarah had our new bracelets for our foundation's fundraising.  When she handed me one, Vinny said he and Julia needed one.  He asked what it said, and we told him is was the website so people could read about them and other Camp Brenner kids on their computers.  He said, "Does it say I hate cancer?"

In our eyes, "Yes, it does."  We all hate cancer.  It is the reason we will never stop fighting, never stop advocating, never stop reaching out, never stop helping, and never stop praying. 

For a split second, as Vinny and Julia scampered along the window ledge and admired the helicopters outside, you could pretend these were just carefree kids.  And then we said goodbye as they headed up for chemo and a conversation that no parent ever wants to have, we headed out for our break before the next surgery.  Please lift up Vinny and his family in prayer. We encourage you to hang a gold ribbon as part of your Christmas decorations this year.  Every time you notice it, please lift up one of the thousands of courageous cancer kids.

Super Siblings

Every day is such a precious gift.Siblings have an incredible bond, especially when they are young.  They are each other's friend, foe, playmate, partner in crime, comforter, and encourager.  They are just always around.  Most siblings don't remember life without the other one around.  Carter and Julia have always had a close relationship.  They spend their days together, every day all day, and the arguments are minimal..usually over who's running the show.  Carter likes to be in charge (big surprise) and Julia has been a willing and cheerful follower all of her life.  When she first expressed a contrary opinion, he was highly offended.  This still tends to be the source of most fights.  He also gets irritated when she whines, we ALL do, but it is less these days.

Now the past couple days have been intense.  When Julia has a UTI, she is like an angry attack dog, poised to strike.  She takes out her anger, frustration, and pain on everything in her path.  Poor Carter has been yelled at, hit, kicked, and punched.  I pulled him aside after breakfast on Wednesday and said, " Look, Julia feels rotten and we have one more day of this until her medicines start working.  We need to give her space and do everything we can not to upset her. Hopefully we can all survive till bedtime."  He was so understanding and up for the challenge.  I think that is part of what made me want to write this post.

It has been touching to watch their relationship over the past year and a half.  When she was diagnosed, his life changed completely, too.  He had to come to grips with this beast called cancer at the age of 5. He was very concerned about her hair falling out and wanted to be the one to tenderly brush it after bath...
 
He was the one with questions, concerns, and worries. He would lovingly read her the cancer kids storybooks over and over.  It helped and reassured both of them in different ways...

He was the one passed from house to house as we were busy with the hospital and work.  He was the one left out, but deeply impacted.  His best friend and partner in life was missing from his life and in pain.  Even when she was at home, she was often in bed and sick.

The H1N1 outbreak made things especially tough for him.  Most siblings of kids with cancer are included in the treatment process.  The hospital staff do an amazing job of making them a part of everything that goes on and meeting their unique needs.  In our case, the hospital was shut down to siblings from October to April, so Carter couldn't even set foot in the building.  It created a lot of extra anxiety for him about what was happening.  He missed the reassurance of being able to at least see his sister and know she was okay.

When she was home, he was very attentive and did everything he could to make her feel better.  If she had to feel bad, he was going to be be right beside her...





 celebrating the end of treatment!!!


As the healing process goes on, we are able to see how he is handling all of this.  He has had many questions along the way that he has finally been able to ask.  He wants to know more about what cancer is, how it works, what is done about it, what all the different types are, how the scanning process works, how a person heals, etc. etc.  I am continually amazed at his ability to understand and reason.

I also see the anxiety.  He keeps track of all her appointments in his head.  He always knows when her next scan day is without us saying a word.  Scanxiety exists in the elementary set, too just on a different level.  He does not know what relapse is, but he knows what we are looking for.  Kids are smart.  As a parent I would love to be able to reassure him that everything will be fine, but there are no guarantees. We can't make him that promise.  It is a life lesson they are learning very early.

Seeing them together over the past months has been such a tremendous gift, like the rebirth of a relationship.  He has his playmate back and she is smiling again.  He is still very protective of her and concerned about her health.  Recently when she had to go to the ER for her UTI, he was frantically asking questions about where she would be, what tests would be done, how would they treat her, etc. As I was putting on her coat and shoes he was at the table working.  He ran over to hand her this as we walked out the door...

They are so blessed to have each other.  He is the leader and protector.  She is the encourager and comedian.  They fit together like two pieces of a puzzle.  Seeing them together laughing and being kids melts my heart every time.  They are eagerly making up for lost time. 

 
Every day is such a precious gift.

 
}