Friday, March 6, 2015
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
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
|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!|
|4th of July 5K|
|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
|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|
|free Slurpee at 7-Eleven on 07/11/14|
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|
Thursday, May 15, 2014
There were the earliest days that should have been filled with joy and happiness and getting to know our sweet boy and establishing our family of four, that were instead filled with so much sadness, so much worry.
There were so many sleepless nights, fearing that Ezra might spontaneously bleed to death because his platelets were so low. Peering through the darkness, watching for blood...from our newborn baby.
There was blood dripping onto floors of hospital rooms, after too many failed attempts to draw a lab or place an IV.
The vomit. Oh the vomit. There were SEVEN months of vomit, often multiple times a day. Of all the horrible things we've witnessed, this image might haunt me most.
There was the time Ezra had an IV in his head, and I had to sit there with a nurse, and slowly and gently pull out one hair after another in order to remove the adhesive covering before we were discharged. I will never forget Ezra's precious hair, torn from his precious head, clinging to my fingers...all this after quite possibly the worst night of our lives. It was probably one of the more minor things that Ezra has experienced, but the night Ezra had to have a platelet transfusion when he was only a month old was excruciatingly painful, stressful, and scary. Maybe it was the six attempts it took to place an IV, the doctor who exuded anything but confidence for our unique situation, the many forms you have to sign to acknowledge the complications that can arise from accepting someone else's blood products...or any number of factors that were outside our control that night. If I could erase that entire night from my memory, I would in a heartbeat.
There were entire days spent on edge, waiting by the phone for test results. Somewhere along the way I lost track of the number of days spent this way.
There was frustration like we've never known after months without answers...the topic of many a blog post.
There was the battle to keep breastfeeding.
There were too many procedures requiring sedation.
There was the painstaking task of recounting Ezra's entire medical history every time we had to meet a new doctor or medical professional.
There were nights spent desperately searching on the internet, trying to put the pieces of the puzzle together.
There was finally hearing the words: "We think we finally have an answer. JMML. This type of leukemia has a 50% survival rate...you'll be meeting with the transplant team next week. Ezra's best chance for survival is if he is as healthy as possible when he goes into transplant." (These words came directly after three days of fever and vomiting).
There was the time we sat in an exam room and tried to explain to our three year old that we had to rub a pokey "toothbrush" on the inside of his cheek because it would help baby brother. And then we had to imagine what it would be like if our three-year-old was a match and would have to go through with the bone marrow donation. We had to imagine both of our children in pain.
There were days spent desperately searching for the light at the end of the tunnel and struggling not only to put one foot in front of the other, but just to get out of bed in the morning.
There were days we felt like we were walking through the valley of the shadow of death, questioning if our tiny and frail little baby could possibly survive aggressive chemo and a bone marrow transplant.
There was coping with the reality that life was happening all around us while our lives would be at a complete standstill until Ezra was healthy.
There was a hole being surgically placed in our baby's belly.
There was coming to terms with the fact that Ezra's best chance for survival was testing positive for a genetic disorder with its own list of medical problems.
There was googling "Noonan Syndrome" and seeing incredibly troubling, outdated information before finding current, much more helpful resources.
AND THERE WERE MUCH, MUCH HAPPIER MOMENTS.
There was peace that passes understanding.
There was mountain-moving faith.
There were miracles.
There was gratitude.
There was the realization that a marriage and love could actually grow stronger amidst adversity.
There was my mother-in-law who faithfully met us at every single children's hospital appointment so that she could watch big brother, keep him away from the germs at the hospital, and allow us to focus on getting help for Ezra.
There was my mother who began coming over faithfully every single day after work so she could lend a hand while we figured out how to administer Ezra's chemo and other medications...and who more often than not, still stops by after work to lend a hand.
There was my sister who hung out with Judah during our frequent visits to Ezra's primary physician (pretty serendipitous that her work is right next door to the doctors office).
There was my niece who has helped us by folding more loads of laundry and emptying the dishwasher more times than I can count.
There was my dad who has prayed more fervently than anyone I know.
There was my father-in-law who shaved his head and raised money to support childhood cancer.
There were literally hundreds of prayers from family and friends.
There were meals that showed up at our front door.
There was cash handed secretly to us at church with a whisper that we should use it to fill our gas tank.
There was a week of fasting and prayer by many of our church family that immediately proceeded Ezra's first normal CBC.
There was kindness from strangers.
There was Josh's amazing company and co-workers.
There were full-blown community fundraising efforts.
There was a gifted photo session (at the time we thought it might be the only family photos we'd have a chance to get with our sweet boy).
There were words of encouragement from old friends and friends of friends and friends of friends of friends.
There was Kasey.
There was discovering an amazing support group of other NS parents just like us, including our "3 in a million buddies."
There was our oncologist telling us about the doctor she knew with Noonan Syndrome.
And there was going on to learn about a Ph.D. student, and a pharmacist, and wonderful parents, and so many other AMAZING people living with Noonan Syndrome.
And there were small strides, and big strides, and normal lab results, and weeks without vomit, and and and, there was a first birthday! A day that we feared might never come.
This really only scratches the surface of the year that was. But I needed to write this post, to close this chapter, so that we can start a new one. So we can start living again.
We are ready to continue spreading awareness about JMML and Noonan Syndrome.
We are ready to gather more stones and face whatever Goliaths come our way.
We are ready to fight for and advocate for Ezra to get the help he needs to be the happiest, healthiest, smartest boy he can be.
There will be days when we are tired and weary and we will have to reread the posts we've written this past year to remind ourselves of that fire and desire to be brave and courageous again.
And God will give us the strength to face another day and conquer another challenge.
What a year. Here's to many, many more.
Sunday, April 20, 2014
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:
|the birthday Easter bunny|
|first time at Sunday school|
|Ezra and his buddies|
|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|