Tuesday, December 20, 2016

MEET EZRA: EYE SURGERY


That moment when he can no longer hold my hand, when I have no choice but to let him out of my sight, through those white double doors and into the operating room...that moment is the hardest.

Dear surgeon: please be careful, please be swift, please be successful.

We want to hold his hand again as soon as possible.




Monday, November 21, 2016

MEET EZRA: DISPLAYS OF EMOTION



Yesterday's lab visit was one of the most traumatic yet. Three and a half is a tough age to restrain child and shove a needle in his arm...twice. Ezra was hysterical, and angry, and fought so hard I could barely keep him still enough. I held his legs between my legs, held down one arm with my hand, and held onto his head with my other hand. It's so difficult to hold down 25 tiny pounds...enough to keep them from wiggling but also to not hold on too dangerously tight.

When they finished, Ezra was still sobbing and angry. He immediately ripped the bandage off his arm before it had a chance to clot. I suggested that they have him pick out a sticker, hoping for some temporary distraction. So they opened a drawer with rolls and rolls of stickers. And Ezra walked over to the drawer, slammed it shut and yelled, "I.don't.want.a.sticker!" There is something to be said about a three and a half year old's display of emotions. They don't hold anything back. They don't slap a band-aid over it, or try to make it better with a pretty sticker. They feel what they feel and they don't apologize for it.

Their "displays of emotion" are usually about unfair cirumstances like being told they can't wear the same dirty superman shirt four days in a row with the green pants that don't match, or that they can't have five applesauce packets before noon... Their "displays of emotion" are not usually about being pinned down by the people they love while strangers stick sharp objects into their body...for the hundredth time in their short three and a half years.

So while for a split second I thought I should tell Ezra to be polite after he slammed the drawer shut, I quickly shut that instinct down. It's completely unfair that this is how his life goes sometimes...that he's experienced so much pain and trauma. And sometimes band-aids are worthless and all the stickers in the world would not be enough to mask the pain and to put on a happy face. And in that moment I was proud of him for telling us what he thought about that stupid band-aid and those stupid stickers! Bravo, Ezra.
There are so many parallels I could draw from this story right now...it's so eerily relevant. But I'll move on
to the next part.

By the time we got to the car after the lab Ezra had calmed down. He was exhausted from giving it his all...and shortly after, he fell asleep before we made it back home. So I kept driving. He really needed rest. He's been sick so frequently these last couple weeks I'm sure sleep is one of the things he needs the most. I kept driving and I made my way all the way out to Finley Wildlife Refuge. It was a beautiful time of day. The rain had stopped and so much blue filled the sky. And I drove by this barn...the barn where I thought we were taking our first and last family photos with Ezra only three short years ago. And I gave thanks. I gave thanks that he's still here. I gave thanks that he's feisty enough to keep enduring all of this. I gave thanks for the lessons he's taught me and everyone with a soft enough heart to hear them.


 

Saturday, August 13, 2016

MEET EZRA: MRI


Throughout the past three years as we rollercoaster with Ezra's health, these sunsets remind us of the beauty and blessings there are to behold no matter what scary things we are faced with. Among all of his challenges, Ezra's vision has been steadily worsening over the past year. On Monday we will head up for another @ohsudoernbecher day. Ezra has a post-op appointment for the surgery he had earlier this summer and he will also have a sedated MRI to make sure nothing is going on neurologically before he has eye surgery later this year. This will be sedation #9, procedure #1000 (not really a thousand, but it definitely feels like that). It's mind-boggling to me that my three-year-old son has endured so much in his young life...and yet, it is the only life he knows...and he's certainly not letting it stop him from living it to the fullest (evident by the bruises and scrapes he is covered with from head to toe from running around this summer). If you think about it, please send your love and prayers Ezra's way on Monday. We are already anxious to get this next obstacle behind us.



Wednesday, June 8, 2016

MEET EZRA: #9

05/30/13
06/11/13
08/19/13
09/18/13
10/09/14
05/28/15
12/17/15
& tomorrow
. . .

Tomorrow will mark Ezra's 8th sedation and 9th surgical procedure. And even though we've done this before, it's never easy seeing this sweet boy rolling away in a hospital bed, the big white double doors swinging shut behind him. It's never easy entrusting the life of our child to an anesthesia team, who may or may not have done their due diligence to understand the complications that can arise with sedating a person with Noonan Syndrome. It's never easy spending hours in a busy waiting room, eyes burning from staring at the glowing update screen and gasping for breath in anxious anticipation for the surgeon to walk out each time a door opens. It's never easy.

But here we are again, and here is another opportunity to make the best of the hand Ezra has been dealt. People don't get stronger when life is easy. The calm, happy moments rarely shape us into something better than we were before. So here's to another opportunity for strength and courage, for hope and love, for perseverance, for growth and healing, for choosing joy.

Thank you for all the love and prayers you are sending Ezra's way!

 






Wednesday, April 20, 2016

MEET EZRA: THREE YEARS OLD

When he was only weeks old, and so sick, with no diagnosis, and with such grim prognoses, I have this vivid memory of sitting down and completely falling apart, telling my friend between the tears that I just wanted to know how long I had with him...if it was months, or if it was years.

I am so thankful the answer was YEARS.

These past few months have brought some of our worst fears to life again, and it's been anything but easy navigating through it all. But what a gift this little roller coaster of a boy is. Every day he is alive is a gift.

Beyond thankful for the days that turned into weeks, the weeks that turned into months, and the months that turned into years.





Wednesday, January 13, 2016

MEET EZRA: AND HE MOVED ON



Yesterday:
Josh scrambled to leave work after a meeting and circled the parking lot in the pouring rain, unable to find a parking spot at the hospital. Meanwhile, they called Ezra's name. You never know who you're going to get at the lab...and at first I had a moment of panic when I saw her face, but after sorting through the catalog of faces in my memory, I remembered, she got him with one stick the last time, she's one of the good ones. At this point Ezra knows what's going on: "No shot, no shot!" I have Judah with me too. He is pretty oblivious, but I want to be sure he doesn't see the needle go into Ezra's arm, or the blood. He's seen a lot of things with Ezra...massive amounts of vomit and horrible incisions, but he's never seen a blood draw. By this point Ezra is screaming and gagging himself. I'm simultaneously praying and hoping for them to get him in one stick and for him not to throw up on me. Judah is spinning in the chair in the corner, blissfully unaware. Thank God. Josh is still looking for a parking spot, but we've got to get this over with so I tell them to go ahead. It's amazing how much I used to not be able to handle blood. I'm sure I've told the story before about my years as a waitress, how there were a few times I nearly passed out when I had to carry out plates with too-rare meat. And now I look for the blood. I'm desperate for that moment right after they poke him when I can see the blood coming into the tube. And then I let out a quick sigh of relief, and I squeeze his little legs and arm to keep him still. I whisper, I sing, I plead. It feels like an eternity, but I try to convince him that's it's almost over.

But is it almost over? Is this ever going to be over?

The rain was relentless this morning. And at times, that's how this journey with Noonan Syndrome feels...so relentless. Sometimes he never seems to catch a break. And when he does catch a break, and when we take that moment to celebrate, it's becoming harder not to wonder if it is only the calm before the storm.

Josh finally made it in right as we were walking out of the lab. Ezra stuck out his left forearm (we call his left arm his "money arm" - somewhere along the way we figured out that that arm has the best odds as far as blood work and IV's go) and told his daddy, "Owie." He started to cry a little again. Josh picked him up and he buried his head in his shoulder for a moment. I reminded him that he could color for a few minutes. And he pulled himself up onto a chair at the table with the crayons. And he moved on.
Oh Ezra, you teach me so much about life. You weather storm after storm...and you just move on.

"Life isn't about waiting for the storm to pass...it's learning to dance in the rain."

***UPDATE!!!***


Not long after I clicked the button to publish this original post, we got some great news: Ezra's blood from yesterday is NORMAL!! As much as I have been holding onto the hope that this was all just a *weird Noonan Syndrome thing,* I was also bracing myself for another bone marrow biopsy this week or next after my last conversation with Ezra's oncologist. Thankfully, after speaking with some experts and with these results and the marrow results, she has come to the decision that the abnormal stuff over the last couple months is normal for Ezra. Translation: it doesn't seem to be a recurrence of leukemia!!!!! It's taken me a while to post this this afternoon because I was scared to celebrate prematurely, but this is truly great news. We're not 100% out of the woods. Ezra's spleen is still enlarged, so we will continue to monitor it and get labs done every six months...but as long as none of those nasty JMML symptoms pop up again, we're free to go back to weathering our other storms (that seem a lot less scary than cancer right now!). So thankful for everyone's prayers and kind words this morning...I feel like you completely expedited this rainbow after a very difficult day yesterday and all the uncertainty of the last couple months. So much love and gratitude from the Parker family.



Sunday, January 3, 2016

2015 IN PICTURES

Best of family:


Best of Josh & Elisabeth:

Best of Judah:

Best of Ezra:

Best of yoga: