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.



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