Monday, February 3, 2014

Make-A-Wish

When I was a little girl, every birthday and fountain full of coins brought the same wish...to be a princess.






The day we moved into Brent's Place was a day I will never forget. Every corner I felt more and more blessed. Our experience with Make-A-Wish has been the same. After Esther made her wish a couple months ago, we've been getting little bits and pieces of the surprise. This last weekend Esther's wish grantors came and delivered all the details, as you can see, Esther was completely enamored.

Along with goodies for Esther, long to. the. floor. gowns and "real" crowns were delivered for each of our princesses along with a pirate hat and sword for Rourke. We will get to spend almost a week in California including two days at Disneyland where we'll have a special meet and greet with the princesses, front row seats for a beautiful light show, and appointments at the Bippity Boppity Boutique where the girls will receive a royal treatment by the Fairy Godmothers, and Rourke will get to step up to be the defender of these beautiful maidens as a royal knight. Esther can't wait to meet Sofia the First. We'll also get to spend some time at Knotts Berry Farm and Rourke is totally excited to eat with his hands (and not have do all that princess stuff) at Medeival Times. We're hoping to be able to see some family and friends who live nearby and to take in the vast beauty and power of the ocean for a day.

The Make-A-Wish Foundation of Colorado has been phenominal, every need or request has been met with incredible grace and generousity. We are so thankful for this gift to our family.

Tuesday, January 21, 2014

For the classroom of children taken hostage and the seven killed

Around 35 children are diagnosed with cancer each day and today, 7 died. Including our friend, Justin. Our government's funding and value on the lives of these precious children is embarassing, no, heartbreaking to me. Today is Truth 365's kick off campaign to make these voices heard. Watch this video and join me in making sure Esther, and the kids diagnosed today, and cries of the mothers and fathers, sisters and brothers, aunts, uncles, cousins and friends of the boys and girls who died today have a loud and present voice in the hearts and minds of the people elected to cause benefit to the citizens, the children, of this country. Thank you.

 

Sunday, January 12, 2014

We didn't send Christmas cards this year...

It was just over a year ago Esther was discharged from the hospital following her stem cell transplant. We had celebrated Zinnia & Esther's fourth birthday and Christmas apart. This year it was nice to just be together. We've had a busy couple of months with Esther's surgery to remove her plate, scans, a trip to Reno, Sofia and guitar cakes for five year old girls, Christmas, a 12th wedding anniversary, New Years, and now we're back to school. Whew.

The kids loved flying on an airplane and did great. The kids were hungry when we landed, so of course we did the most reasonable thing a person can do...drove straight to an In-N-Out.

We had fun celebrating Zinnia and Esther's birthday with two sets of cakes. Zinnia's request was a guitar cake and Esther wanted a Sofia the First cake. In the busyness of surgery, scans, a trip to Reno, and a Christmas celebrations, I ran out of time to properly plan the party I've been imagining. I just wanted to make it really special for both girls. After about a hundred phone calls to my sister and mom, I realized for us, just all being together is really special.

Sweet Zinnia

 

Esther Babe

The girls kind of had two parties! One with our discipleship team on their birthday and a few days later with our extended family.

Christmas morning was lots of fun at my parents' house. The kids carried on the tradition of waking my mom and dad far before dawn and opening their gifts with that wide, sleepy-eyed wonder and excitement.

Anthony and I celebrated our 12th wedding anniversary. The kids spent the weekend with my parents complete with adventures in their attic as they helped put away Christmas decorations. We both distinctly remembered nervously waiting at the restaraunt last year, trying not to freak out about the obviously ill hostess who was passing out menus and call pagers to each diner. We held our breath and wiped our pager and menus down with sanitizing wipes, finishing off with a bath of hand sanitizer. This year we did something totally gross and germfilled...BOWLING! We ate at our favorite restaraunt in Ft. Collins and then went to the bowling alley. It was fun and great to not have to worry about germs!

Bisetti's

To celebrate 2014, my sister and her family came over for a delicious meal, games, and a sleep over for the kids. We reminiced about playing BINGO at Brent's Place with the new BINGO roller we got for Christmas.

 

Esther is doing very well. She's feeling good and even had a perfect check up at the dentist. That's a big deal for as much therapy as she's had! It has been a gift to see her personality return. She has a humble playfulness that was muted, her vibrant smile and sweetness has returned!

Our yard has been a source of TONS of fun. The hill in the backyard is the perfect sledding hill for young kids and this icy, packed snow is fast! Almost daily we have had to drag them in, especially Esther. She would stay outside all day if she could.

 

 

 

 

Oh, one more fun detail...we're going on an airplane again soon. Esther's wish has come true, so maybe instead of Christmas cards, we'll have to send Make-A-Wish cards from Disneyland where the kids will get to dress up in fancy dresses and knight's clothes, meet princes and princesses, put their history to work in a Medieval setting, and try out some thrill rides with the jams and jellies. And not to forget our lone ranger, we're also hoping to squeeze in some time at the ultimate land of Legos. More about that later. Make-A-Wish is a wonderful organization. The degree of detail that is put into making wishes special is incredible. We are so thankful for the opportunity to celebrate Esther's journey and health.

On a more difficult note, our friend, Justin, is not doing well. Following a round of high dose chemo, he contracted rhino virus...the common cold. This virus quickly wreaked havoc on his tired body and resulted in very serious complications. His chances of overcoming this illness and the surgery to give him a shot at a continued fight against are very small. Please pray for a miracle, for moments for he and his family to connect, for his life. This 10 year old boy has been fighting and overcoming neuroblastoma for over seven years and has impacted many, many hearts across the country. Thank you for lifting him and his family up.  Also, please remember the hearts if the many doctors and nurses who have cared for him over the last many years.  I suspect the sting I've been feeling the last couple of days is far sharper for them. 

Friday, December 6, 2013

Rainbows

Finding out we were pregnant with a second set of twins was overwhelming.  I was already the mommy of three little children.  Rourke was just three and Frannie and Lydia were still not two...three babies.  I knew I would love them, but how could I care for two more?!  Two twin pregnancies....I was certain I would end up on bed rest.  What if these babies were premature?  We were trying to find a house on a shoestring budget.  There were just a few in our price range and they needed work.  We were getting discouraging comments and concerns from people around us.  We couldn't sell our townhouse because we were underwater, so we had a renter lined up, who fell through.

To the west of our house is a big open space.  As we drove to this house for a second showing, babies growing my belly, my eyes wet with worry, I looked east across the open space and between me and our house were two.  Two rainbows.  God's promise to all of creation, we won't drown.  I'm generally not very swayed by signs, but it did bring peace.  

The house ended up being a perfect fit, I was never on bed rest, Zinnia and Esther just a little early, but fine, we found terrible renters.  It all worked out.  Our friends and community rallied around us, we made it.  

When Esther was first diagnosed I remembered these rainbows and struggled.  I wanted them to mean that everything was going to be white picket fences and good grades.  

Esther's scans were perfect.  There has been a mystery spot on her lungs since diagnosis, it never lit up with MIBG, it was just there, it's gone too.  Perfectly clean scans.

Esther drank her CT contrast like a champ.

Add caption
When we pulled up to our house, Esther sleepily told me to look.  There it was.  A rainbow.  It was faint, but still there. I didn't have a smart phone when I saw the rainbows in the field five years ago and this isn't the best picture, but you can see it....
  
I've been thinking about these rainbows since yesterday afternoon.  Should I take signs more seriously?  I am unwavering on the sovereignty of God, but signs?  Perhaps my faith is weak right now, I don't want to be one of those crazy people wearing animal skins eating grasshoppers and honey.  God sent a rainbow as a sign that he promised to never flood the earth again, but what about our lives?   

It was just a year ago Esther was about to enter the hospital for her stem cell transplant that a dear woman, with her husband a few other friends prayed with me in the lobby at church for Esther's life.  This woman shared with me a few months ago that later in the night God woke her, and she was burdened to pray for Esther.  In the cold hours of the night, she was certain God said He had done it.  He had answered our prayers in the lobby that day.  I didn't know how to respond, I was scared to believe that God would say yes.  Why is it easier to live in doubt and fear than in confidence and freedom?  I don't to live life preparing, fearing the next blow anymore.  Living life in fear of what might happen isn't going to make it hurt less anyway.  I don't know the future.  While this is not heaven and there will be pain in the future, Esther is cancer free!  She is alive today and our family is together.

I am not ready to proclaim this rainbow as God's sign that Esther will never have to face cancer again, because she might.  The only certainty is that if she does, God will carry us through.  There's a song we sing at church, "Ready Now" by Desperation Band.  Here's the lyrics and a video to listen to it...we don't do the wicky, wicky, woo part, but that'd be okay with me if we did. 

  


You come like You promised You would
I want to surrender for good
I know that I need You 
And I don't want to keep living life alone

So take my heart
and make it new
make it true
And make it like You
Take my hands
I lift them high
They're Yours not mine to do
Do what You will 
Do what You will
Do what You will

I feel like a blind man in Your sight
I know that im wicked in Your eyes
So wash me and make me shine like the sun
I want to tell everyone
that You're the only one

So take my heart
And make it new
Make it true
And make it like You
Take my hands
I lift them high
They're Yours not mine to do
Do what You will 
Do what You will
Do what You will

Im ready now
Im ready now
Im ready now
Do what *You* will
Im ready now
Im ready now
Im ready now
Im ready now
Im ready now
Im ready now
Do what You will
Im ready now
Im ready now
Im ready now

So take my heart
and make it new
make it true
And make it like You
Take my hands
I lift them high
They're Yours not mine to do
Do what You will 
Do what You will
Do what You will

Im ready now
Im ready now
Im ready now
Do what You will
Im ready now
Im ready now
Im ready now
Do what You will
Im ready now
Im ready now
Im ready now
Do what You will
Im ready now
Im ready now
Im ready now

Wednesday, December 4, 2013

Surgery, Snow, and Scans

Esther's surgery went well yesterday, so that is a praise. Tomorrow is scan day. I am have been battling anxiety and am not sure if it's related to scans or the snow. I'm nervous to drive to Denver early in the morning on roads that could be icy. Probably a bit of both. Esther will have a CT scan, lab work, and a pulminary function test. Hopefully we will learn more about why her recent cold so quickly turned into bronchitis. I can't remember if I wrote that before, but she was treated for bronchitis after a chest x-ray last week showed some thickening in her lungs.

I want to ask for prayer for clean scans, for no cancer, and I do. At the same time, I don't want to ask anymore. Although the daily tasks related to cancer are finished, it is never far away. I want to ask for it to just be gone...all gone. There are things I am so, so thankful for. For the people we met, and the love we've been shown. For the nearness of God and the simplicity of choices for that day. I never want to forget the grace poured over us.

We've been working to live life, to choose faith, to just put one foot in front of the other. I may have said this before, but it's kind of like when you've been working really hard and then you sit down, sometimes it's so hard to get back up, to keep going. But you have to, so you pick yourself up and move forward. We can all remember a time when tragedy entered and everyone kept going when you just want everything to stop. Sort of like those strange dreams where you've forgetten to get dressed, but no one notices. You're there, freaking out because you're naked, but everyone just keeps walking. I'm striving to be paitient for rest and to look for the graces and mercies around in our daily lives. Here are a few...

 

Rourke chose St. Basil's cathedral, one of areas of study this year.

Rourke chose St. Basil's cathedral, one of areas of study this year.
Lydia chose a Clara and her Nutcracker

 

Frannie's pick, royalty!

 

Zinnia's looks like a delicious Christmas cake ball

 

Esther wanted a blue candy cane
I love the creative practicality of boys. Rourke put all the trains and cars on a track of tinsel.

 

Coloring before surgery, with bunny's help!

Esther did amazing yesterday. She even let them start an IV. She hardly flinched. This was both relieving and disheartening that a 4 year has had to be so brave. She shouldn't be used to pokes, she should've fought and screamed. At the same time, her trusting, brave nature has carried her well and has been a grace over her life.

Our Christmas lights are especially pretty in the freshly fallen snow.

 

Tomato cages turned upside down make great trees!
 

 

Tuesday, November 26, 2013

Surgery is Delayed

Just a quick note to let you know that Esther has come down with something. She had some high fevers over the weekend and then again on Monday. It's not really safest to put her under general anestesia, so her plate removal is re-scheduled for next Tuesday. Her next follow up scan is next Thursday, December 5th, at Children's in Denver.

On a different note...there is a neat, EASY, opportunity to support families at Brent's Place who are living there over the holidays. A home building company is giving $10, up to $4000, for every new like on their facebook page. This will go toward making the holidays away from family and friends special with gifts and meals. Head over to the Cardel Homes Denver facebook page, and give 'em a thumbs up.

 

Wednesday, November 13, 2013

Don't Worry, Mommy, I Won't Let You Fall

Frannie and Lydia have been taking piano lessons on Monday afternoons. Rourke has been asking if we could take a drive up to Horsetooth, so this last week during their lessons, Rourke, Zinnia, Esther and I took a little hike on the east side of Horsetooth Reservior. It was COLD, but the kids didn't care. They were happy to romp around the rocks and trails. Zinnia asked if she climbed a mountain. Rourke wanted to climb into every crevass he could find.

I was holding Esther's hand because she's still a bit unsteady with her broken leg and a couple of the trails had a bit of a drop off. I had her on the inside of the trail, and when we got to the parts with an edge, she told me not to worry because she wouldn't let me fall.

While we do not yet feel normal, our days, for the most part, are. Little things can bring everything rushing back. Today during our homeschool program we got to learn a little about and launch rockets. As we walked the trail over to the lot where the rockets were launched I was catapulted right back to a year ago. Just about a year ago on a school day we took a nature walk right on that very same trail. I have a picture of one of our girls and Thomas' sister. The temperature, time of day, light, and landscape are nearly exact. This year I am so thankful to say that hair on the heads of Thomas and Esther is not.

F and M one year ago.

Oh, I just wanted to stop and cry and call the girls over for another picture. I wanted to rejoice and tell the story of what a year has brought, that God brings us back to these places and we can remember. Last year I would've been on my knees, pouring out my fear. We were on hyper alert for germs because Esther was gearing up for a stem cell transplant. I was scared. This year I could've stood on that trail, hands lifted high with thankfulness. Alas, as with life, my class was running ahead.

This is a fitting analogy to how we're doing right now. Life is running ahead and we're keeping up, but wishing we could sit by the edge of the trail for a bit. Just to breathe it all in and then let it all out. Hiking around the hills at Horsetooth was a bit of that breathing for me. Refreshing. Now if only I can give myself some space to do it. My hands are clenched pretty tightly to our days. I know I can't make up the time I missed last year, but I just don't want to share. Partly because I want to want to settle deeply into the relationships, to see the hearts and needs of my husband and children, but also because I don't know how many days I'll have with any of them. I want to hug them and love them and teach and train them every opportunity I get. When there is five little hearts, there's not a lot left for anything else. I'm sure this swing is natural, and I'm recognizing the need to sit at the edge of the trail.

We've been growing a thankful tree, a simple way to sit by the trail. The reflection occurs every day for about an hour as the sun illuminates our gratitude.

Esther had her lab work done today, and it looks great. Her leg is healing and the plate will come out November 26th. Her scans will be the following week. The words that ring in my ears from the neurosurgeon we first saw at the beginning of this road get a bit louder every now and then. He said neuroblastoma usually melts away with chemo, but the problem is that it comes back. For now, it's quiet, making it much easier to choose to not live in constant preparation for the next blow.

Here's a bit of our normal and a few of some not so normal, but really cool, days....

Fun at the pumpkin patch with our school friends. We enjoyed a hay ride, pet the farm animals, played on a giant pile of hay, and hiked out about 1/4 mile to the far edge of the patch and found our pumpkins.

Snake Eyes, two ballerinas, Alice in Wonderland, and Sofia the First!
Sometimes breakfast is just fun.
Esther made her wish!

This past weekend a nice fairy godmother and fairy godfather came to our house to ask what her wish would be. Her first wish was to go to Disneyland and have a fancy ball with all the princesses. Her secondary wish was to have a castle bed for her and all her sisters. We should find out what will happen in the next few weeks.

Tomorrow night we're even going to a concert! The organization, Blue Star Connection, that gifted us with our piano is having a concert in Ft. Collins on Thursday night. They have some awesome cigar box guitars that a bunch of elementary aged kids built available to purchase and it should be a fun night. We'd love to see you there at the Blind Pig, can buy to sell. It starts at 7pm and should be awesome. The Mayor even declared November 14th, 2013 as Blue Star Connection Day in Fort Collins.