Tuesday, April 18, 2017

MEET EZRA: 4TH BIRTHDAY INTERVIEW

Last days as a three-year-old! I can't get over this sweetiepie. He
is so good when I video him, I think he would make the best little
actor! He would be the perfect, forever small child for a kid's
role...he would change so little from season to season. Perks of being
pint-sized, I say ;)

So many feels when I think about Ezra turning 4. I've been re-reading old blog posts like this one and this one...thinking
back on that tumultuous first year and all he has been through
since...it makes me even more grateful to be celebrating another major
milestone.

PS: I *still* intend to write something up
about my DC trip. I already have my next THREE rare disease/RASopathies
events lined up for 2017...so I'd better get a move on!

If you haven't already, please follow us on Instagram here: @elisabethparker.
So much of the time I have good intentions of writing on the blog - but
life is busy and Instagram is the best way to keep up on Ezra cuteness
and all the latest happenings of the Parker fam.

Saturday, March 11, 2017

MEET THE PARKERS: ONE-PAGER

I can't wait to share more about my experience at Rare Disease Week on Capitol Hill last week! While I work on that post, here's the one-pager I created in collaboration with my friend Kellie and our friend Misty to hand over to our congressmen. Misty was SO instrumental in preparing us for our trip...thank you so much for sharing your wisdom and expertise with us, Misty.




Thursday, February 9, 2017

MEET EZRA: OUR FIRST VIDEO


Yesterday my sweet friend Cherish, who I attended my Baptiste kids yoga teacher training with, hosted a fundraiser for Noonan Syndrome and the RASopathies Network in honor of Ezra. She had me make a little video telling Ezra's story, and why we spread awareness for Noonan Syndrome in February (and throughout the year), and why we raise funds for the RASopathies. I can think of few things worse than seeing myself on video, but if you don't want to read through my many, many blog posts, the video is a pretty decent summary of the last few years. I am so touched by Cherish's efforts to support our family, and I am overwhelmed with gratitude for all her clients who were willing to learn about Noonan Syndrome for the first time yesterday. I was thinking about it last night, and although I don't say this in the video, I came to realize one really specific reason why it's so important for me to spread awareness (even though that can sound so cliché) - it's because once upon a time, before I had a child with special medical needs, I heard other mothers' stories that touched my heart...Kelle Hampton, and Lisa Leonard, and so many moms throughout the years who were courageous enough to share their stories. This world was so foreign to us before we entered it, and it was the stories in the back of my mind from these mothers who came before me that helped reassure me everything was going to be okay. It was their strength, their joy, their vulnerability, their hope, their honesty, their unconditional love that helped set the mark. If Ezra's sweet "Hi, I'm Ezra!" stays in the back of just one mom's mind down the road when she learns her child has a rare disease or special needs, and she is encouraged by his joy, our joy...then it is all worth it.

 

Wednesday, January 25, 2017

STAR WARS BOYS ROOM


Because deep down inside I'm actually a huge procrastinator and I have a million things on my to do list (Hello! Noonan Syndrome Awareness Month next month and DC trip!!)...here are pics of the boys' finished Star Wars room! Such a labor of love. Still have a couple of diy projects on the back burner (like a light saber holder by the door, of course: "Park your light sabers here") - and those will have to wait.






Previous sneak pics from Instagram:




Sunday, January 15, 2017

MEET EZRA: AM I DOING IT RIGHT?


Yesterday I read this beautiful post by one of my favorite bloggers entitled, "Am I Doing It Right?: Special Needs and Siblings." So much resonated with me. We have moments like these all the time...

"Don't tackle your brother, he just had surgery." (Even though he just punched you in the face).

"He gets to pick [again], because he's sick [again]." (Even though he's picked ten things in a row).

"You can't have that because he's allergic to it and it's not fair if you have it and he doesn't." (Because if you have that Trader Joes sucker and he doesn't, the entire store is going to hear about it before we walk out the door...and I've already met my quota of public tantrums for the day).

I think we're doing a pretty good job. And then I think about these moments...and some of the more significant ones that are too hard to put into words. And it's hard not to second guess, to wish we could do it better, to wish that there was a simple answer. But none of this is simple. It's so complex. All of it.

I recently shared that I am going to Washington D.C. at the end of February for Rare Disease Week on Capitol Hill. What an incredible opportunity to advocate for Ezra, Noonan Syndrome and the RASopathies! And what an incredible responsibility. I've been awarded a travel stipend, I've registered for the events, I've booked my flight...now what? I have so, so much homework to do. I've never been into politics. And now I don't have a choice. This is so important. I have to advocate for my son. For his friends. For people we've never even met. I feel so honored...and so underprepared to be taking this on.

I have devoted so much of the past three years of my life educating myself, networking with other parents, learning to be the caregiver to a child with chronic medical issues, advocating and spreading awareness about Noonan Syndrome, the RASopathies, JMML, and rare disease...and I ask myself: Am I doing it right? 

Which organizations should I be focusing my attention on?

Which ones should I help raise money for?

Will it ever be enough?

Will it make a difference?

Will it make Ezra's life better?

Could it help save his life someday?

4th International RASopathies Symposium 2015
Next month is Noonan Syndrome Awareness Month. I will be blowing up your social media feeds with pictures and posts...and some of you will *like* and comment on them. You might even read them. And some of you won't. And I might worry that I'm being obnoxious, that I'm overdoing it, that I'm doing it all wrong.

And then I will come back to that last question:
Could it help save his life someday?

And I will no longer worry about my own pride or whether or not I am doing it right.
Because his life is too important not to do everything in my power to try. To try to educate just one more person. To try to inspire some young person to study genetics. To try to make a real impact on Capitol Hill.

Ezra's fan club, I have some exciting things I am planning for February. Last year's family yoga fundraiser class was such a success I want to do it again. I also want to teach a regular power vinyasa fundraiser class for adults. And I plan to finally get that t-shirt order ready! Please, please stay tuned.



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.