Sunday, April 20, 2014

MEET EZRA: ONE YEAR OLD!


Baby P 2.0, baby brother, baby boy, squishy, stinky bottom, sweet-sweets, E-Z, baby bubba, little E, our one and only Ezra, amidst those uncertain early days, there were times we we didn't know if you would live to see this day...but you did it!!!! Happy 1st birthday to the sweetest, strongest little guy we know!

What a lovely day for a birthday...Easter Sunday. We started off with some pics at home, then went to church where Ezra got to go to Sunday school for the FIRST time. Afterward we rushed home to get ready for the big party with our family! Here are some of the best shots of the day:

birthday morning

the birthday Easter bunny



first time at Sunday school

Ezra and his buddies

the party!

the Very Hungry Caterpillar birthday

lovely cake from the Sweet Life Patisserie



checking out Ezra's monthly pictures








not feeling the gluten/dairy/soy/egg-free bday cake

buried in presents



the cousins! (missing Jacob)

all the family


Thursday, April 10, 2014

MEET EZRA: FEELIN' THE LOVE & GIVING THANKS


This afternoon my phone rang with a number I didn't know...but since I spent a couple years working on campus and my mom has worked there for nearly 15 years now, I knew it was a campus number and took the call:

Me: "Hello?"

Caller: "Hello this is Sean Mannion. We've heard your family's story and we'd like to invite you to practice."

No big deal. Just Oregon State's quarterback on the line! Glad I took the call! In case you haven't noticed, we're kind of diehard Beaver fans around here...especially for Beaver football. Josh was able to attend one game last year at the last minute, but I didn't go to any games...for probably the first time in 12 years since transferring to Oregon State my sophomore year. Josh and I went to every home game we could as students and held season tickets for a few years after we were married. The past couple years we attended as many games as possible, but last year was obviously a little difficult with Ezra's unpredictable medical issues. There were a lot of things we missed out on as a family last year...cheering on our Beavs in person was one of them. Needless to say, we are thrilled for the opportunity and our answer was YES, we would love to go to practice! (We've had many fairy godmothers/fathers over the past year and we know that one of them, Mrs. Oshinowo, is to thank for being the little birdie in Oregon State Football's ear to encourage them to reach out to us...thank you Lola!).

This is just one example of the love shown to our family. There have been so many events in honor of Ezra over the past year I don't really know where to start. There were the Friday bake sales and golf tournament at NuScale (Josh's work) in the early days. There was the Nadzitsaga Lacrosse Club Medicine Game in October and the very well attended Papa's Pizza event last November.



And just this past Saturday our family was listed as one of the recipients of the proceeds of the Corvallis Kiwanis Club's 60th annual pancake breakfast.


We belong to an amazing community. Wow.

But the outpouring of love to our family doesn't stop in Corvallis. Throughout this journey with Ezra, we have received so much love, many prayers, and support from throughout the country (even world, can you believe that?). In February, my best friend Sarah who lives all the way in Nashville, TN hosted a Premier Designs "Party with a Purpose" that was so well attended (both online and in person), we were able to use some of the proceeds to buy a special new high chair for Ezra that will help him be more organized with his eating and will benefit his overall motor skills. How great is that?

It is not lost on us how blessed we are. Our family, our church, our community, our friends, our co-workers, and complete strangers have made all the difference to us throughout this year. What could have been a stressful financial time has not been. You have allowed us to focus on surviving the hardest days and celebrating the happiest ones. Not all families in our shoes can boast of such an outpouring of love and generosity, and we do not take that for granted for a second. Thank you!!!!!


We want you all to know that we plan to use the Ezra Parker Fund (set up by our friends from church after Ezra's initial JMML diagnosis) to continue paying for Ezra's ongoing special needs and medical expenses...and someday we hope to attend the Noonan Syndrome Conference so we can meet other families who have been touched by Noonan Syndrome and consult with doctors who are NS experts. In the meantime, to those of you who continue to express your desire to help Ezra, in lieu of donating directly to our family we encourage you to donate to any of these organizations who are leading the way in helping children like Ezra who have Noonan Syndrome and/or JMML (in no particular order):


Again, we are SO thankful for the support we have received over Ezra's first year of life. It brings tears to our eyes and brings us to our knees in thanksgiving to God for the way he has used each and every one of you to encourage and bless us. The generosity poured out to our family has been so humbling...and we will make it our mission to look for opportunities to pay it forward in the future. Thank you.