Obsessed with Shoes

Naya’s been on a shoe kick lately.  Here she is in Vail with custom-made boots.  They even let her brand her initials on the floor of the store because we’ve been VERY GOOD customers :)  She also went to school yesterday with bright pink laces to contrast with her lovely purple Nike shoes.ImageImageImage

Zak and Naya on Top of Avanti Express in Vail, CO – Grandma Would Be Proud

Zak and Naya on Top of Avanti Express in Vail, CONaya once again showed us how to tackle fear, live life, and get out there and “just do it!”  We have been in vail all week.  Mother nature cooperated magnificently providing seven inches of fresh snow on the day of our arrival, then over the last two days another eighteen inches of fluffy powder.  Of course, during the first few days Naya was adjusting to the altitude so she was more focused on keeping hydrated and topped off with calories but as you can see above she was determined to get out on the mountain and tear it up with her brother.

We all started off on chair lift number 1, not the gondola because that would be too easy and not our normal routine so she donned her skis at the base of the mountain, skied right over to the quad lift, got scanned by the Vail folks, hopped on the lift, jumped right off at the top of the hill and skied down to the next lift, Avanti Express.  From there we went up to the top of the mountain, down the other side, up to Wildwood Lodge for a hot chocolate.  While we where taking in the sites from 11,000+ feet her nausea got the best of her and she did get sick but as you all know that wouldn’t stop Naya.  She went into the bathroom with her mom, took care of business, came out and then skied down Avanti, a blue run with a black diamond section in the middle.  The snow was deep, some places over a couple of feet, she kept her goal in site and made it down the run.  Then hopped on the lift, back up to the top of the mountain and then down to Eagle’s Nest gondola for a casual, amazing vista, ride down to grab lunch and chill.

Reflection?  Twelve months ago she was in the hospital recovering from two brain surgeries, receiving radiation therapy and chemotherapy, and, as only my 10 year old daughter can, showed me how to conquer fear and “just do it!”  She is AMAZING!

Grandma Taru – We Will Miss You, But Never Forget You!


Last night we lost grandma Taru.  She passed in her home where she was most comfortable and a vital member of her community.   Her friends and relatives describe her as strong, loving, proud, opinionated, smiling and always a pleasure to be around.  They will miss her, and so will we.  

She will certainly be missed but not ever far from our thoughts.   She gave so much support to Naya through her treatments, plus her other grandchildren – she had four – and was always there to help us and them.  She used to do anything to help, from watching Naya, making great Indian food in a pinch, watering our plants, cleaning up, and taking care of the kids.  She was a real salt of the earth.

We will miss you grandma. We will remember all the fun things you did with us, your smile and your generous heart. Thank you so much for all you have done to help Naya.  We love you!

Yummy hot chocolates save the day

Naya’s been making progress every day transitioning back to school, getting into a more regular eating routine and enjoying some of her favorite activities including shopping for jewelry, perfume, dresses and horseback riding.  She is going to school almost every day for 2-3 classes, keeping up with math homework and about 450 calories away from being off of her feeding tube.  

Starbucks hot chocolates, with whip of course, have been a staple.  We’ve become experts on the calorie counts in tall and grande sizes, with whip, syrup, and milk.  Thank goodness for Starbucks!!  

Here is Naya studying fractions, completing her math assignment and giving herself the calories she needs to become independent.  Her nausea has improved too.  We’re hoping things continue as we get ready to go to Vail this month and enjoy time together as a unit, reflect on the year, and hopefully enjoy Vail.  For our friends in Denver, we’ll send out an email to see if we can get together and see all of your lovely faces :)Image


20130311-085642.jpgA year ago today, Naya was admitted to the ER with what we thought was a stubborn infection. As you know that day changed our lives and the lives of many people around us.  I thought I’d take a few moments and share some reflections (and cliches) from the past year:

  • Your inner strength will surprise you.  We are much, much stronger than we imagine.
  • Life isn’t meant to be “in control”.
  • Do your absolute best every day.
  • Every day is a new day. A bad yesterday doesn’t mean today can’t be great.
  • Fear requires no evidence; it just exists and it’s your choice how you face it.
  • You are not alone, ever.
  • Being a parent is an awesome gift and responsibility.
  • Your kids watch you at all times. How you behave will get them through adversity, or not.
  • Surround yourself with people who really are good to you.
  • Embrace new friends who show compassion and heart.
  • Best friends are always best friends no matter how long it’s been since you spoke.
  • Look to your extended communities for strength.
  • Rid yourself of people who wronged you. They don’t deserve your time. They know who they are.
  • Tough times force bold decisions. Make them and don’t be afraid.
  • Commit to living an amazing life every day.
  • Buy a horse. Get a dog or two. They bring peace when nothing else works.
  • Love your kids. They need it and will pass it on to their kids.
  • Love your spouse or partner.  He or she will get you up when you are at your absolute weakest.
  • Give back, be generous and be kind.  Your life will be richer when you do.

I’m sure there’s so much more, but that’s it for now.  To our friends and family, thank you for being with us an entire year.

It’s Been a While

Since I saw your eyebrows adorn your face. Okay, not nearly as good as Aaron Lewis penned but still a beautiful sight to see. What a great tune!

Hair is coming in, eyebrows are getting thick and we are working on longer school days and more food not through a tube. All good things for sure and Gabby and Duke seam to like it.


Murphy Pulled Through

Just like the best friend he has been for 8 years, Murphy went into surgery with Naya and I’m happy to report he pulled through and even comforted Naya through the journey.

Naya came out of surgery and is feeling strong and happy to have that port out of her.

It dawned on me that it may not have been apparent that Murphy’s boo boo matches Naya’s which is located under her right shoulder just like Murphy’s.  The docs at CHOP operated on him and made him all better.



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