Everyday Fabulous

Becky and Rosie came to say hi.  Becky is running the Chicago Marathon this weekend in Jonah's honor through Cal's Angels.  Cal's is a local cancer support/fundraising organization.  They are one of the many that are working hard to change the landscape of pediatric cancer.  They host regular pizza parties with toys on the oncology floor, they grant special wishes (they sponsored Jonah's adaptive bike), they build partnerships (like ours with Becky) and they fund research.  If you're ever looking for a local way to make a difference, I'm sure Cal's has an idea.  We so excited to get to cheer Becky on during the marathon!

The other weekend, Prayer Bear came home with Jonah for the weekend, so he tagged along on all of our adventures.  We went out with the Bakers for a night of bowling, video games and dinner.  The kids all had a blast, I think Prayer Bear had fun too with so many Noah's Ark alum!

Legoland in Schamburg may not be as awesome as the one in Denmark, but it'll do.  Here Jonah is striking a pose in his 4-D glasses.

Ms. Bev has the heart of our family.  She redefines dedicated Promiseland (Sunday school) volunteer.  She was Anna's leader for years and is currently Jonah's leader while waiting for Julia to join the group as well.  She has a giant heart and a goofy spirit that makes us love her so.

Julia was the first star student of the week this year!  She said that she helps others by playing with them and helping them up when they get knocked down.  Her favorite food is peas, not green beans and every kind of dessert.  At home she likes to play princesses, play on the play set and color.  Pinkalicious is her favorite book and pink is her favorite color.  Her favorite animals are lambies, like her lovie.  At school she likes to play on the playground and play with her friends.  She is special because God made her and made her silly and kind.  When she grows up she wants to be a cheerleader and a doctor for the hospital.

Yukon, a 125 lb malamute therapy dog, came to visit Jonah at therapy recently.  He was so excited, and in all of our therapy dog experience I don't know that I've met a more mellow giant.

Noah and Anna's school, Marion Jordan, recognized September as pediatric cancer awareness month.  To kick the month off, Noah and another boy impacted by cancer, Theo, spoke at an all-school assembly.  We are so proud of Noah for getting up in front of the whole school to talk about how pediatric cancer has impacted our family.  During the month they sold gold bracelets, gold shoelaces, painted fingernails gold and sprayed hair gold all to raise money for Alex's Lemonade Stand, another pediatric cancer organization.  The school was able to raise $3,100 through all of their efforts and were rewarded with a fun, and complicated, game of tag and a glass of lemonade.  It's so encouraging to be part of a community that supports us through actions as well as words.

Just a little taste of what normal life is looking like for us these days - everyday fabulous.  I'm obviously not going to post the child in time out or a harried selfie as I'm late to something, but know that's part of everyday fabulous too.  We just choose to not linger too long on those parts in favor of the celebration of everyday.

This week promises to be a big one for us.  Jonah is going for facial reanimation surgery on Friday (10/14).  This is the first quality of life decision that we've made for Jonah.  All our other decisions have been life decisions, and although they're hard to make, you know you have no choice.  This is the first time we are sending Jonah into a surgery that hasn't been required, but will be beneficial to his long-term quality of life.  The surgery is complex (I'll spare you the gory details), and should last 6-8 hours.  Jonah is expected to spend 3-5 nights at Lurie again, starting in the PICU.  The surgery will be performed by plastic surgery, and they expect that it will be 4-5 months before we see results from the surgery.

Please keep Jonah in your prayers for the next days and weeks.  Pray that the surgery is textbook and successful - that there are no complications.  Pray that the postoperative pain is well managed, and that Jonah is able to tolerate a few more nights in the hospital without it dredging up memories of his last stay (maybe that's more for the adults too).  We also pray that Jonah is able to realize benefits from this surgery.  With a window of 4-5 months before results will start to be visible, that puts him on the other side of his next MRI in January.  We are doing this surgery with the belief that Jonah will have a lifetime of clear MRIs - that his beautiful smile will have a multitude of opportunities to shine - that recurrence won't steal those moments from him or us.