Friday, July 31, 2015

MEET EZRA: AFTERTHOUGHTS ON THE RASOPATHIES SYMPOSIUM


And because I like to keep things real, the weekend of the symposium wasn't all sunshine and rainbows...and pink cotton candy clouds. (Can you believe this sunset, though!? This picture was taken from the glass elevator of our hotel on our last night in Seattle).
I never thought twice about going to the symposium. It was in Seattle afterall, which is just a hop skip and a jump from where we are (plus a 6.5 hour drive on a Friday during rush hour, turns out). And what a wonderful opportunity. The chance to meet Noonan Syndrome experts AND Rick Guidotti, wow! But I never thought about what would happen after I got to the symposium. Like it never even crossed my mind. I was hopeful that I would meet other families with kiddos affected by NS and maybe some adults as well, but I didn't think about how I would feel about that other than happy.

Well, happy wasn't the only feeling I felt. Let me first explain that along with the RASopathies Symposium, there were also the CFC and Costello Family Conferences happening at the same time. CFC and Costello are also RASopathies syndromes, but they have many more outwardly physical symptoms than Noonan Syndrome. I've seen photos of people affected by all the RASopathies online...but this was my first time seeing these faces in person. And it was hard. Hard as in I practically had to run to the bathroom to keep from bursting into tears when I first stepped into the hotel. Even now I'm embarrassed by my reaction to seeing these uniquely beautiful kids in person. There is so much guilt that goes along with the fact that Ezra is only mildly physically affected...and the fact that things (although many have been excruciatingly hard so far) could be much, much worse. I'm still not sure how to process these feelings. They're the same feelings that come up when I'm reminded of our leukemia journey and how much worse it could have been. This stuff is HARD. And it just doesn't go away. "Easy" cancer journey guilt / not-as-severe-of-a-
syndrome guilt is an almost everyday occurrence.
There was also this realization over the weekend that for us and these other families, this was how we were spending some of our precious "vacation" days. And that this is our life from here on out. Like okay, if we want to be informed, and if we want to make these important connections with our genetic condition community, a large portion of our vacation days and spare change will be spent on these types of conferences for the rest of Ezra's life. And that's not a bad thing, but it's not a "normal" thing...it's not what most families picture when they're planning their much anticipated vacations. And what does this mean for Judah? How are these types of "vacations" going to shape who he is and how he feels about his brother?? Well, I'm hopeful that they will fill him with compassion and a greater capacity to appreciate his brother and those who are "different." Still, it's a crazy thing to be pondering about our five and two-year-olds' futures.

And perhaps the hardest realization of the weekend was this: some of the adults we met who are affected by NS, although vibrant and wonderful and capable, have spent their entire lives being bullied because they look different. They deal with constant pain and anxiety and depression. And while that might not be the story for every person who has Noonan Syndrome, it's not the first time I've heard this...and it is overwhelming to think about this kind of future for Ezra. It is heartbreaking to hear that on top of all the medical issues, all the surgeries and procedures, there might still be these underlying issues that there just aren't answers for.

I don't want to end on a gloomy note, because that's not my thing either, so I just want to reiterate how thankful we were for this symposium...hard-to-feel-feelings and tough realizations included. We are so thankful to live in a time when there are so many medical advancements and a greater understanding of genetic differences. We're thankful to the doctors who aren't content with unanswered questions. We're thankful for people who look beyond the diagnosis and beyond traditional definitions of beauty to see our son and these people as the miraculously beautiful and amazing individuals they are.

And although it's not always easy, we are looking forward to the good stuff that lies ahead of us on this journey. We are committed to continually expanding our knowledge. We are
committed to sharing our knowledge. And we are excited to see how our hearts and our perspectives on what is "normal" and "beautiful" shifts and changes and grows along the way.


Thursday, July 30, 2015

MEET EZRA: RASOPATHIES SYMPOSIUM

A couple weeks ago we had the privilege of attending the 4th International RASopathies Symposium in Seattle. (The RASopathies are a group of rare genetic conditions caused by mutations in genes of the Ras-MAPK pathway. Noonan Syndrome is one of these rare genetic conditions).


The first night of the scientific symposium was a poster session where Ezra was quite literally a poster child for Noonan Syndrome. We proudly stood by this beautiful poster that was put together by the RASopathies Network (a compilation of our photos and text) to answer people's questions about our NS journey with Ezra. We had the opportunity to talk at length with a reporter who is writing a book on advancements in genetic testing and how those advancements are helping to improve the quality of life for the individuals affected.


We also had the opportunity to meet Lisa Schill, Vice President of the RASopathies Network (pictured above on the left with her adorable son Max who has NS), who is one of my heroes. The tireless work and advocacy this woman is doing for the Noonan Syndrome community is unprecedented and I am so thankful for all that she does to make the future brighter for Ezra and his friends. We were also blessed to meet Milena (pictured on the right) and her family. Their son Brycen has NS and he and Ezra had an immediate (and adorable) connection when they met for the first time:


Judah and Lisa's son Max were fast friends too:


This was our family's first opportunity to attend an event about NS. And other than meeting our sweet little girlfriend, Andi, who lives in a neighboring town earlier this year, we had never met another child or adult who is affected by NS (in person). It was such a privilege to meet Max, Brycen, and Landon....and some beautiful women with NS including Becca, Michelle, and Judith (who is busy getting her PhD by the way!).


For the first time we also got to speak with NS EXPERTS! Ezra has been the first patient with NS for many of his doctors, so it was such a blessing to be able to ask questions to doctors who have spent years with multiple NS patients and who have devoted their careers to learning more about Noonan Syndrome and how to best care for the wide spectrum of issues it causes.


And if there weren't already enough highlights from the weekend, Ezra also had the honor of being photographed by this award winning former fashion photographer and phenomenal human being, Rick Guidotti, who has spent the last fifteen years of his career challenging traditional definitions of beauty and empowering those with genetic difference through his stunning photography and newly released and highly acclaimed documentary film, "On Beauty." Please, please take a minute to listen to Rick's TED talk or read/watch more about the film. We cannot wait to see the photos he took of Ezra and hope our paths cross again soon!

Sunday, May 17, 2015

MEET EZRA: TWO YEARS OLD

I'm only about a month late with this birthday post, so I'll just have to repost what I wrote on Instagram on 04/20/15:


If the first year was for worry and tears, the second year was for celebration and laughter...our "year of jubilee," as we fondly called it :) It's not that every day was easy, but when you have cancer and then don't, every day is just a bit sweeter. There are more appointments, more surgeries, and more obstacles on the horizon, but we are choosing joy and bravery...and you'd better believe that we will continue celebrating every chance we get! Happy birthday to our sweet and sassy, funny and fickle, tiny and tenacious baby bro. We love you, Squish! Two looks good on you!


We had a great time celebrating Ezra's birthday the following weekend. Last year, we were still trying to make it through flu season without any major setbacks for his health, so it was a family only party. But this year we got to invite all the baby friends and it was so fun! "Come one, come all! A person's a person, no matter how small!"


A person's a person no matter how small...thank you for celebrating with me, I hope you had a ball!


Friday, March 6, 2015

ANOTHER DOERNBECHER'S DAY


Today was a Doernbecher's day. We have been going up there for nearly two years now. We know the fastest route to drive, which parking spots are best, which bathrooms are the cleanest, the quietest and most comfortable places to nurse, the check-in routine for about eight different specialists, the best places to sit on the three different floors we frequent. We know the days of the week and times of day that are the busiest. We know that we will see something that breaks our heart every single visit. We know that we will see people just like us who have this routine down to a science. We will see parents who are new to this, with fear on their faces or blissfully unaware of the days to come. But as many times as we've had these days, and even though we've been doing them for almost two years, there is a part of it that still feels so foreign. Judah is healthy. Josh is healthy. I am healthy. My pregnancy with Ezra was healthy...with perfect blood tests, perfect blood pressure, clear ultrasounds, no causes for concern. And yet this sweet little person came into our lives who isn't so healthy. He has the tiniest smudge on his copy of DNA.


It's hard to wrap our head around it at times. We did nothing wrong. Ezra did nothing wrong. He is fearfully and wonderfully made. And yet here we are. This is our life now. This is his life. A life of surgeries and tests and check-ups and therapies. A life that is so foreign to families who have been blessed with healthy children. I forget sometimes that we are not one of those families anymore. We are still tremendously blessed, but the reality is, we have been forever changed. Forever inducted into this other world. A world that we're trying to navigate as gracefully as possible. Sometimes we will make mistakes, I'm sure. We will share too much about our journey or maybe not enough. We will miss opportunities to educate others or go overboard at times that aren't appropriate. We will inundate your newsfeeds during awareness months but fail to speak up when you use the 'r' word or other hurtful language. We will struggle at times to celebrate your child's good health because we are simultaneously mourning Ezra's pain or challenges.


But we will figure this all out, one day at a time. And what will make us even braver going forward, is knowing you've got Ezra's back. Knowing that you will continue to take the time to *like* our Noonan Syndrome and childhood cancer and rare disease posts to show your solidarity...even for the hundredth time. That you will embrace this new information, that you will start to normalize it in everyday conversations. That you will think about ways to talk to your kids when they start to notice how small Ezra is. That you will accept him, and us, with all of our flaws, however foreign our situation might be to yours. That is my hope today, at the end of this Doernbecher's day. Thank you for reading this post, our FORTIETH Ezra post. That right there is the kind of solidarity I'm talking about...so thank you :) We are so grateful for you coming alongside us on this journey we embarked upon nearly two years ago and for your continued prayers, support, and love.

Tuesday, January 13, 2015

A POST ABOUT YOGA & KINDNESS FROM STRANGERS


Since I became Ezra's mama, I'm afraid I've become a bit of an oversharer. So I debated whether or not to share more about this wonderful thing that happened to me last week. I kind of wanted to keep it all to myself. But I have this tugging at my heart that I should share more.

Let me start at the beginning for anyone who is reading this blog for the first time. Our second son Ezra was born in April 2013. He has a longer medical history than many of us will have our entire lives. After many grueling months with no answers, he was diagnosed with Juvenile Myelomonocytic Leukemia (JMML) and later Noonan Syndrome. Amidst the chaos of his first year, running to and from the children's hospital and being housebound for eight months to protect his fragile immune system, I never lost the baby weight, and overnight (it seemed), it was replaced with unhealthy weight (by way of sadness, worry, stress, and so.many.sleepless.nights). You see, the parents of sick children spend every waking hour (and often all hours of the night) keeping their children alive. They become their doctors and nurses away from the hospital. They take on jobs and roles they never imagined. Sleep, let alone any time to care for themselves, is simply a luxury they do not have. This was my story. I was nursing Ezra every hour in small amounts so that he would not throw up everything because his spleen was so enlarged it left no room in his tiny body for his stomach. I was administering medications via tube five times a day, spaced out in such a way that there was no wiggle room, no margin for error. I was cleaning up toxic chemo puke and poo around the clock. I was unable to sleep at night because of the beeps and sounds from the feeding pump that hung on an IV pole right next to our bed where our sweet little Ezra slept propped up in a rocker so he would not choke in his sleep. I could go on, and I'm sad to say our family had it easy in comparison to other families I have come to know and love. But the point is, the thought of me being away from our sweet boy for more than half an hour at a time was laughable. The thought of me expelling any energy or attention to anything besides caring for my children, preposterous. Exercise, what!? It just wasn't possible.

After Ezra got healthier, after his leukemia was considered in remission, I still carried the extra pounds with me. I was SO embarrassed about the state of my body, I started loathing leaving the house, even though I was overjoyed that I finally had the freedom to do so. I was so ashamed, so uncomfortable in my own skin, I didn't know how to face the outside world again. I cringed every time someone posted a picture of me on Facebook...I even had to ask for some of those pictures to be taken down because I couldn't handle it. I just wanted to give everyone who saw me a disclaimer that I looked the way I did because of all that my family had been through in the past year.

But, about 4 months ago, I said enough is enough. I mustered up all the courage I could and I took a leap of faith. I was inspired by the health and fitness of my dear friend Lindsay who had been faithfully practicing yoga, even throughout the entirety of her pregnancy, and I said "Hey, can I come with you to yoga?"



While I still don't recognize myself in the mirror most days, and still have many pounds to lose before I get to a place that feels healthy again, yoga has helped me to give myself some grace. It has shown me how strong I am and how much possibility lies ahead of me. It has empowered me and challenged me. It has energized me and brought me peace. It has been so many things that have been such a blessing to me after such a hard time in my life.

About a month into my yoga journey, this past October, we found ourselves up at the children's hospital with Ezra once again. Between pre-op and surgery the next day, I needed a moment to give my anxious heart a break, so I headed to Lululemon with my mom to look at yoga mats. When the employees there asked if we were out having a mother-daughter shopping day, I laughed and said no...and somehow, by the time I got up to the register to make my purchase, they had learned enough about sweet Ezra that they decided they wanted to do something nice for me. They gave me one of the mats I had been looking at. As in, here you go, we don't know you, but we want you to have this awesome mat, free of charge. I was blown away by their generosity and as soon as things settled down after surgery I wrote them a thank you note. I was loving my new mat and also wanted to tell them more about my amazing yoga teacher, Melinda, and how thankful I was to be her student.

Fast forward to last week, the beginning of January, when a lovely handwritten note arrives in the mail from Lululemon, explaining how a few weeks back, they had the opportunity to meet my yoga teacher and that she was just as lovely in person as I described in my letter. They said that they had been thinking about Ezra and my family, and that in the spirit of the season, they wanted to do something else for me. They gifted me with me six months of yoga classes. SIX months. I'm still teary with joy.

*****

I am so blessed to be Ezra's mom. And I would be his nurse again in a heartbeat. But I am incredibly grateful for the place he's at right now. I am grateful that I can focus a little bit on taking better care of myself so that I can better care for him, and be present for my oldest son Judah, my husband Josh, and all the people I love in my life. I am so grateful that my friend Lindsay let me tag along with her to yoga that first time and for her support along the way. I am grateful for Melinda, and Nicole, and Jen, and Jessica (and Robin and Veronica at barre3) for being so welcoming and encouraging from the second I stepped into their classes. I'm grateful for Rachel, Ashley, Natasha, Kelly, Cynthia, Janine and all my friends and family who have encouraged me as I have embarked on this journey to take some time for myself and to better my health. I'm thankful to Lululemon for giving me these incredibly generous gifts - I feel so blessed.

It is hard for mamas like me to overcome the trials of the past...and sometimes even harder to ponder the trials of the future for a child who has had so many odds stacked against him. But small acts of kindness truly make a world of difference. They make yesterday and tomorrow just a little bit easier.

Think about what you can do this week to bring some sunshine to someone who might be in the middle of a storm. A random act of kindness, or maybe just a smile and a little extra grace...you might just be the rainbow they desperately need to see.

Friday, October 10, 2014

MEET EZRA: SURGERY THIS WEEK

photo by Becerra Photograpy via Peas & Happiness

Hey friends, it's been such a long time since I've written about Ezra's health which means things have been calm for awhile. Hooray! We had the most wonderful summer. It truly was the best summer of my life. Ezra was healthy. We got to spend the warmest days at the pool, went on family bike rides and hikes on the weekends, we ate out way.too.much. We went to Portland, to the coast, to Sunriver. We got to do so many things that we just weren't able to do last year. Josh and I also celebrated our 10th wedding anniversary! It was a blessed time of truly enjoying each and every moment together.


And now it's fall. Judah has started preschool and Ezra and I have enjoyed a few coffee dates with friends when it's just the two of us. It's been great. But we've had this surgery waiting on the backburner for quite some time, and a few months back, Ezra's doctor decided he was healthy enough to proceed. So we did. Ezra was in surgery for three hours at Doernbecher's yesterday. It was his FIFTH sedated surgery/procedure in his 17 short months. But he did so great. He truly is the most resilient, brave little boy. Unfortunately, there was only so much they could do yesterday, so six months from now we'll have to do this all again and it will be a little more involved next time. Ezra also had some complications from being intubated yesterday that landed us at the doctors this morning, but after a steroid shot, breathing treatment, and rest this afternoon he seems to be breathing much easier. Thank you all SO much for your prayers and love this week...it gave us the peace and strength we needed to make it through!

1st bike ride of the summer!

Alsea Falls

4th of July 5K

Benham Falls

The boys love Home Depot :)

Judah's 1st day of preschool!

PS - A couple special thanks: First, to our extended family in Indiana who participated in a Noonan Syndrome 5K at the beginning of the summer. We were so touched by their participation in this event to honor our sweet little E!

via Team Noonan

And second to my lovely friend Kara who did an interview with me on her blog for her awesome series, "The Real Housewives of Benton County." Her husband Chris of Becerra Photograpy took some beautiful pictures of our family for this interview and we really appreciate those as well (the photo at the top of this post is one of those and it completely melts my heart every time I see it!).

Wednesday, August 13, 2014

MEET EZRA: 15 MONTHS OLD

showing off on big brother's birthday 07/19/14

Super behind on this post (Ezra will be 16 months a week from today), but I am so behind on Shutterfly albums and baby books, I need to document some of these milestones before we forget them! Ezra's gross motor skills have really blossomed over the past couple months! He has gone from only army crawling and not being able to push up to sit, to being able to do all of that, plus crawling on all fours, plus pulling up to stand, plus cruising all over the place. We are SO proud of him and his progress and determination!

sporting his ornamental g-tube in a kitchen sink bath

Still tiny (wearing 6-9 month clothes), and still just as sweet as can be (although getting a little feistier and sassier these days ;)

Happy 15 (almost 16) months sweet Ezra, you've come a long way baby!

"A person's a person no matter how small." - Dr. Seuss

MEET JUDAH: FOUR YEARS OLD

free Slurpee at 7-Eleven on 07/11/14
So our first baby boy turned FOUR last month. We can hardly believe that this kid will be starting preschool in just a few short weeks. I'm already having separation anxiety, but he is going to love it! He will also be starting soccer in the fall. It is so exciting to be reaching these new milestones, but my heart is aching as well. Where has the time gone!?

Judah is such a sweet boy. He continually amazes us with his awesome memory and has such a cute way with words...he is always making us smile. He is so long and lean (90th percentile for height and 80th for weight), it's hard for people who don't know him to believe he's only four. He could spend all day playing with cars and trains, but has loved our many trips to the pool this summer getting more and more brave each time. He loves making new friends but doesn't quite understand personal space...we're working on saving kisses for family members only :) He ADORES his cousins. He got a new bike and other lovely gifts for his birthday, but I think his favorite present of all was just getting to spend the day playing with his cousins!

We love you so very much, Judah. We're so excited for all the new things this year has in store for you!

Yearly questions (btw, the answers to these change minute to minute):

What is your favorite color? red & blue
What is your favorite toy? cars & planes
What is your favorite thing to watch? Mater's Tall Tales
What is your favorite thing to eat? "Quesadillas with chips, chocolate milk & applesauce"
What is your favorite thing to wear? Packers shirt
What is your favorite game or sport? soccer
What is your favorite animal? cheetah
What is your favorite song? Acapella (by Karmin)
What is your favorite book? Pajama Time
Who is your best friend? Caeden
What is your favorite holiday? Christmas
What do you want to be when you grow up? an Engineer like daddy

invitation inspiration via here



cupcakes by Corvallis Cake