Sunday, November 25, 2012


Nate is an obsessive kid but he has never been obsessed with something for so long and with such ferocity as he is with airplanes.  The first thing Nate asks for every morning is his airplanes, and then he plays with them and talks about them all day long.  He makes them fly all around the world and rattles off fun facts about how many engines or propellers each one has. 
This is Nate's prized possession--a DC-9.  It used to be called "airplane blue wheels" until Grandpa Green set us straight.  Nate probably has seven or eight different airplanes, not including the ones he pilfered from Grandma Lowe's house, but for some reason the DC-9 reigns supreme. 

Our friends the Shoemakers caught wind of Nate's love for airplanes and very kindly invited us to go see their small plane at the Palo Alto airport last week.  This was probably the highlight of Nate's entire life up this point.  In fact, I'm not sure it will ever be surpassed.

He got to sit in the cockpit and push buttons, sit on the wing, and spin the propeller.  All the while, planes and helicopters were taking off and landing right next to us.  He was in aviation heaven.

sitting on the wing

Sophie and Max, our gracious hosts
Thanks for showing us around the Bonanza, Shoemakers!  It was such a treat.

Saturday, November 24, 2012

Nate has some sensory processing issues and you never know what's going to set him off.  Last year, it was Christmas lights.  We knew this was going to be a problem since they are kind of unavoidable during the month of December.  So Scott decided to try a little immersion therapy.  You can see how well it went. (Nate did eventually overcome his fear of Christmas lights and we were all able to enjoy the season).
This year Nate is so ready for Christmas to start.  The end of Halloween was a huge blow for him and it was really hard to get him excited about Thanksgiving (maybe because he doesn't eat?).  So we may or may not have been getting a jump start on Christmas celebrations during the last two weeks. 
He is already so excited for Santa to come and he knows exactly what he wants Santa to bring: more airplanes.  I just got him a couple of new Christmas books, one about Santa and one of the Nativity.  He likes both books but hasn't grasped the meaning of the Christmas Story yet.  The other day we were reading the Nativity book and he started scratching at the picture of baby Jesus.  I asked him what he was doing and he said, "I tickling baby Jesus!". 

Friday, November 16, 2012

Life is a Highway

Nate is a Green, which means he likes tv.  But he is also part Lowe, which means he likes grandiose musical performances.  Hence, his love of The Voice was born.
I usually watch The Voice at night and then show Nate any performances I think he would like the next day.  The ones he likes, he really likes, and begs to watch over and over and over and over again.  This week he liked Everybody Talks and Life is a Highway. 
At the end of Life is a Highway, someone throws down their microphone stand as an offering to the pop-rock gods.  Nate thinks this is so amazingly cool.  I gave him a makeup brush today to use as a mic and he gave me his best impression of it.

Wednesday, November 14, 2012

A boy and his paintbrush

Nate has asked me every single day for the past four days if we could paint.  I always say yes.

War paint.

Yesterday he was wearing a cute new sweater and I didn't feel like having to wash it already, so I took it off. 

He painted on his tummy and then said, "I need a bath."

Friday, November 9, 2012

A Gift for Lucy

This is our friend Lucy.  And she needs your help.
Lucy is four years old and she's smart, determined, and very, very funny.  She loves all the things four-year-old girls love: princesses, preschool, and her incredible family.
Jocey, Lucy, Cherisse, Chad, and Dallin
Although her mind is sharp, Lucy's body is failing her.  Like Nate, Lucy came home from the hospital a perfectly healthy baby.  Then at four months old, she was diagnosed with Spinal Muscular Atrophy (SMA) Type 1.  SMA, like SMARD, is a neuromuscular disease.  It is degenerative and it is terminal.  Most SMA Type 1 babies don't make it past their second birthday.  Lucy just celebrated her fourth!
Lucy shares her birthday with her sister!
Lucy's life and spirit are miraculous.  Here is Lucy wanting to swim "all by herself".  She craves independence just like all four-year-olds do, but her body stands in the way.  Despite her limitations, she has an incredible excitement for life and wants to get out and explore the world.

Lucy's family is in need of a new wheelchair accessible van.  This van will be fully automated so Lucy will be able to drive her own power wheelchair up a ramp into the van, lock it in place, and have it act as a carseat for her.  Her mother, Cherisse, will no longer have to lift Lucy, her wheelchair, a ramp, and all of her equipment every time they leave the house.  It will mean getting out of the house more.  It will give Lucy the freedom and independence that she needs so desperately.  It will completely change day-to-day life for this wonderful family.

Let me tell you a little bit about Lucy's amazing mom, Cherisse.  She cares for Lucy in a way that I think few mothers out there are capable of.  She cares for her other two children just as well.  And her husband.  And somehow she still has more time and energy and love to give to everyone else.  She has been a huge help and inspiration to me as I've tried to navigate becoming a special needs mom.  Basically, she's superwoman.  You'll never hear her complain about the physical toll transporting Lucy is taking on her, but this van is going to change her life as much as it will change Lucy's.

 Lucy and her family are a true light in this world.  Read their blog and see for yourself.  It's a reminder to all of us to treasure the special everyday moments that happen within your family.
If you want to help Lucy get a new van for Christmas, please donate here.  I know Lucy is on my Christmas shopping list this year!


Monday, November 5, 2012

Halloween Day

There was a lot of build-up to Halloween this year at our house.  We read Halloween books, did Halloween crafts, made a costume, and decorated the house, but I don't think Nate realized all of this fun culminated in one amazing Halloween Day. 
First we went trick-or-treating downtown Los Altos with some friends.  I think Nate mostly liked seeing the "Halloween windows" and other kids in costume, but I made him trick-or-treat a little since we had no candy at home.  This picture makes it look like no one had any fun at all, but I promise everyone had a good time.
When Dad got home from work, we had pumpkin sloppy joes and carved Nate's jack-o-lantern.  Nate was very specific as to how his pumpkin should be carved.  He wanted it to look like the "worried" jack-o-lantern in one of his books. 
So three carved-out circles later, Worried Will was born.

Here is Nate's best impression of Worried Will looking worried.
We made one final trick-or-treat stop at Grandma and Grandpa's to show off his costume and say hi to cousins.
Happy Halloween!

Sunday, November 4, 2012

Saturday, November 3, 2012


The response to our Candy Wrapper Drive has been amazing!  Thank you so much to everyone who has been collecting their wrappers to help raise money for SMARD research.  It's exciting and uplifting to know that people all over the country are learning about Nate and his other SMARD friends! 

Check out this article about a junior high school in Utah that has embraced Nate and this fundraiser.  They have already collected 6,000 candy wrappers.  We owe a huge thank you to everyone at Mapleton!

We know there are so many others helping to collect wrappers in your schools and communities.  We want you to know how much we appreciate your efforts.  We feel so loved and supported by your hard work!

Tuesday, October 30, 2012

Halloweens Past

Nate was 6 months old on his first Halloween.  He was a hunter and spent the day playing in a hospital bed.
home from the hospital
zombie hair
In 2011, Nate was a chubby He-Man.

loved that shaggy 'do

 Stay tuned to see what Nate's going to dress up as this year!

Monday, October 29, 2012

Have No Beard

Today while I was holding Nate he looked at me lovingly, stroked my chin, and said, "Have no beard.  Only Jesus have a beard."  I love him.

Tuesday, October 23, 2012

Gilbert & Graham

Nate has taken a cue from his dad this year and really embraced Halloween.  Pumpkins, witches, and especially ghosts are a very big deal at our house this year.  I can't remember how he got here, but there is a ghost in our house named Gilbert (who happens to look a lot like a burp cloth).  Nate flies him around all day and makes him say "oooooooooo" and "boo!". 

Graham the Ghost came to our house one day when we were playing in Nate's room.  Nate asked for Gilbert so I reached into the dresser drawer and pulled out a burp cloth.  He was not fooled, he knew the real Gilbert was out in the living room on the couch.  So I told him this ghost was Gilbert's brother Graham, which seemed to satisfy him, and now there are two ghosts making mischief at our house.


Monday, October 22, 2012

Bike Party

Saturday was the first ever SMARDy Pants 40 Mile Ride.  It was a huge success and we felt so much love and support for Nate.  We had 18 riders representing 80 donors and amazingly we surpassed our fundraising goal.  I just can't tell you how blessed we feel and how excited we are to get Nate a wheelchair accessible van and to be able to contribute to SMARD research. 
Saturday morning we told Nate we were going to a bike party.  He took the idea very seriously and barely cracked a smile the whole day.  The rest of us had a lot of fun.  The weather was perfect for a morning ride and we enjoyed getting to welcome back the riders and chat with everyone. 

We owe an enormous debt of gratitude to all of our donors and volunteers and especially Mike Jacobsen, who first conceived the idea for the ride and made all of this happen.  The funds we raised will make a huge difference in Nate's life and the lives of other children living with SMARD.
We still have some t-shirts left from the event, so if you are a donor and would like one, please let me know!  If you're not a donor, shirts are $10 each and come in S-XL.  You can email me at to get your shirt.