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.