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.



Sunday, January 3, 2016

2015 IN PICTURES

Best of family:


Best of Josh & Elisabeth:

Best of Judah:

Best of Ezra:

Best of yoga:


Friday, December 18, 2015

MEET EZRA: 2ND STAGE OF GRIEF


This week feels like a bad dream. I'm still waiting for someone to wake me up. 2015 was such an incredible year for our family. I would summarize it all here, but I'm pretty sure you saw the hundreds of photos I posted on Instagram. So you know. We were giving the good life. There were carefree mini vacations. There was me fulfilling my dreams of becoming a yoga teacher. There was immeasurable joy. Yes, there were more trips to Doernbecher's than we would have preferred. Yes, there were surgeries. Yes, there was bad news here and there. But I simply could not have imagined 2015 coming to an end the way it is. How are we back to the place were I am sitting by the phone, holding my breath, with time standing still, waiting for that news?

I like to sugarcoat a lot of what I write. It is one of the ways I choose joy amidst adversity. But I'm finding it really hard to sugarcoat things today. I am really upset. Just as quickly as I entered the first stage of grief, denying that any of this was actually happening, today I have woken up angry. I'm angry that I had to ignore Ezra's cries yesterday when he kept asking me for a snack on our car ride to Doernbecher's because he had to fast. I'm angry that we had to ride the elevator up to floor 10 where the oncology clinic is. I'm angry that the nurse who took the stats wasn't overly friendly when we were getting admitted. I'm angry that we didn't get to see our regular doctor. I'm angry that the doctor was condescending when I tried to tell him that some of our other NS/JMML friends have experienced these kind of setbacks. I'm angry that I had to see Ezra's blood dripping onto the floor of a hospital room again. I'm angry that it took both Josh and me to hold him down as he hysterically fought the iv therapist. I'm angry that nothing we said or did could calm him down. I'm angry that the anesthesiologist was making annoying jokes while Ezra was screaming. I'm angry that I had to stay until sedation settled in and had to watch his tiny body go limp in my arms. I'm angry that Ezra had to have a huge, hollow needle shoved into bone for the third time. I'm angry that we are re-experiencing our worst memories and our worst fears. I'm angry that all of this is happening the week before Christmas. I'm angry for not being able to sugarcoat things right now.
I'm not angry for being human, though. I am strong. I am brave. I am mostly joyful. And I am human. So I'm going to go ahead and give myself permission to be human today. I'm giving you permission to be human today too. I'm also giving you permission to walk on the other side of the street if you see me today...or to at least take everything I say with a grain (or a bucket full) of salt if our paths inevitably cross ;)
If you don't know me very well and reading this makes you feel like you should call a help line on my behalf, rest assured that I am in fact quite emotionally stable. I do not have a natural tendency to stay angry. I have a really good sense of humor and I am very quick to forgive (even myself, most of the time). I write because it is therapeutic. When I started writing this particular post I was in tears, requesting that Judah go get mama some tissues. And by the end I literally have a smile on my face - mostly because I'm amused about the number of times I used "I" in the paragraphs above. Like, get over yourself already, Elisabeth. I'm also writing this because I kind of want you to have a glimpse into the reality of what happened yesterday. When you ask how I'm doing or how it went, this is how it went. This is real life. It can't all be sugarcoated...even at Christmas. Please give me a little extra grace if I'm not smiling as much as usual or seem like a little bit of a debbie downer. Yesterday was freaking hard. I need lots of grace. Thank you in advance :)

What is a bone marrow biopsy & aspirate on a child like? More info HERE

MEET EZRA: EARLIER THIS WEEK


*Originally posted 12/15/15*

You would think by now we would have this medical rollercoaster thing figured out. But there are so many twists and turns that we always seem to be one step behind the Noonan Syndrome learning curve. The last 24 hours have been crazy. Here's the summary: Ezra got sick this weekend, and after his fever held on for four days strong, we brought him in for a checkup yesterday. At that appointment we learned that his spleen was bigger than the last check up and that there were abnormal cells found in his last labs (the ones we had done at Doernbecher's a week and a half ago). There was talk that his JMML was returning. There was hysterical crying, hyperventilating, shock, fear, and all the feelings. Then logic and levelheadedness set in and we decided to wait to hear from oncology before jumping to any conclusions. There were hours spent anxiously waiting by the phone today. There was *the* phone call from our oncologist (who we thought we said goodbye to for good over a year and a half ago). Here's the gist: she's not freaking out but she's concerned and she wants to get us in for a bone marrow biopsy as soon as possible which turns out is this Thursday. It could be a fluke, it could be a virus, it could be leukemia. There's part of me that is in disbelief that I am even typing this right now. There's another part of me that always knew something like this could be a possibility (a very remote, nightmarish, and worst case scenario possibility, but a possibility nonetheless). There is no precedent or protocol for JMML returning after remission in an NS patient that we or our oncologist are aware of - I have spent a good part of the day reaching out to my Noonan Syndrome family and emailing and getting the ball rolling to contact other oncologists who have had NS/JMML patients.

We are holding on to the hope that this is just another *weird NS thing* that we will have to deal with and NOT cancer. We ask that you hold onto that hope as well and that you would please pray that we can keep our heads straight until Thursday. We are devastated to even think about Ezra having to undergo this procedure (for the the third time), or to even have to walk into that oncology clinic again as a patient - but we've we survived all of this before. We've come out on the other side stronger, and braver, and better...and we know we can do that again. Ezra is a fighter and this is merely a bump in the road. Please pray for him and send lots of love his way - especially this Thursday morning!!

Thursday, November 19, 2015

MICROBLOGGING ON INSTAGRAM


I've been Instagram-ing only a fraction of the time I've been blogging, but it is definitely my preferred form of social media these days. A lot of times you might just get stuck with pictures of my lunch (I have a slight obsession with Caprese salad) or my passion for Baptiste Yoga, but the one and only Ezra is definitely a focus, along with the other lights of my life, Josh and Judah. This blog isn't going away, but my posts are few and far between these days and you'll definitely be missing out on some seriously cute Ezra updates if you don't join me there: @elisabethparker

Ezra has glasses now!


On Instagram 10/26/15:

So many of Ezra's health issues still bring a scare from time to time. Like the other day at his well baby checkup when his doctor found that his spleen was a bit enlarged. But we are done with cancer. So we're not going to give that a second thought. There are so many things that *just happen* with NS...like a spleen being a little big every now and then. So what!

Right now we're focusing on this AMAZING little human saying things like, "I do it!" as he tries, with absolutely zero fear, to walk down the stairs even though he can't fully reach the railing.

There were days early on that it was hard to trust the senior Noonan Syndrome parents who said, "Don't worry, they just do things in their own time. He'll crawl. He'll walk. He'll grow. He'll talk. He'll _____." To see it all unfolding before our eyes...it's amazing. It's amazing for any parent to witness their child reaching these milestones, typically developing or not. But what we are witnessing with Ezra is nothing short of miraculous. To see our prayers and hopes and dreams being answered with this sassy little thing taking off his pants and running (not walking) up to us and saying things like, "Haha, I naked." It is miraculous. Seeing those chubby little legs and a whopping 23 pounds on the scale (*almost* putting us on a standard weight chart)...what!? Miraculous. 

Ezra, we'd prefer you keep your pants on, but we are SO stinkin proud of you. Our hearts are overflowing.

An Ode to Caprese...I wasn't kidding about my obsession

Completed my Baptiste Kids Yoga Teacher Training program in September!