"Suffering the Slings and Arrows of Outrageous Fortune"

So, much to our surprise, Em got a small role in The Sound of Music! She is to be the postulate nun, a small role, but a role.

It is not the part she auditioned for and it was not the part she wanted, but, it is actually a much better fit for her (imo) than what she wanted. And she is happy and excited and grateful. She gets to be part of the cast, have the experience of being in a musical, have a moment on stage and it is something that she should be able to physically do. If not – if she hits a wall or gets injured – she can gracefully back out without causing a huge disruption. It is a blessing in so many ways…

We went into the audition knowing that it was just going to be a good experience and a step towards getting back to the theatre – a victory in and of itself. We honestly didn’t expect her to get a part and, while we are being honest, she got the part because the director knows her well and wanted to use her somehow. The director is a friend and is a genuinely kind and generous person, so, in retrospect, I am not terribly surprised by this kind gesture.

The absence of theatre has been more than a little painful for us – it was just one more thing ripped away in the storm that hit when Em got sick. To be back, even in a small way, feels good.

This business of putting the pieces of our life back together after chronic illness has ripped it apart is hard. It is so hard to let go of the life you planned when it gets turned upside down. When you lose the things you hold dear and they are replaced with what you view as the lesser option – not even Plan B or C, but Plans X,Y and Z – it is hard to be excited.

It is hard until the moment you are brave enough to just let go. At which point, you are suddenly free. Free to accept whatever life holds. Free to just be.  Free from expectations. Free to be grateful for what you have instead of what you don’t have.

‘Climb Every Mountain’ seems to fit well here, but I will spare you my singing and just give you a pic from the movie.

Last winter, my husband and I went on a ‘date’ to a production of Little Woman and I heard then in a casual conversation that Sound of Music had been selected to be on the slate of this year’s productions. I confess, I had one of those moments of profound grief that hit every once in a while. I choked back tears and my heart shattered because my dreams were being dashed, right there on the spot. You see, there was a time that I was on a track to get into directing. And there was a time that I could envision Em as one of the Von Trapp children, my husband in the cast and me and my son on the tech crew, doing whatever.

But times have changed. That life was blown away and now we are in a new one where I am just beside myself with joy that Em was able to audition. For that matter, it has been a big deal for Em to even be able to attend a play – for much of the past 3 years,even  sitting in the audience was beyond her. I cannot say how moving it was to see her on stage, auditioning. Knowing what challenges she has faced over the past 3 years, knowing how much she has lost, knowing how much it physically hurt her to march across the stage, knowing that no other child or adult there had even a fraction of her challenges to endure – well, suffice it to say that it was a victory of epic proportions.

The finish line has shifted for us, the tape has moved and the rules were changed. And I am becoming surprisingly ok with that. What was once important, is now less vital and we appreciate the small things so much more than we ever did before. What once might have caused disappointment, is now cause for rejoicing and thankfulness.

There are so many things to be thankful for: a [relatively] speedy diagnosis and some good doctors who have worked with us to get her better. I am grateful for family and friends who stand by us and cheer us on as we live this EDS life. Of course, I am eternally thankful for Dr. Diana Driscoll and The Driscoll Theory – without the life altering meds (Diamox and Zyrtec and Zantac) Em would still be confined to a dark, hushed, lonely bedroom as life passed her by.  I am beyond grateful for how much Em’s life has improved because Dr. D shared her knowledge. In large part, much of this victory can be laid at Dr. D’s feet – and I am not exaggerating.

I am also grateful to the director of the musical who has given a sick young lady a chance to be a normal kid and do what she loves – a chance that we thought was forever out of reach. Madam Director, (I won’t call you by name here), if you are reading this on my facebook feed, know that I am so grateful that you are giving Em this chance. I know you know that God works in mysterious and wonderful ways and through Him you have given Em a gift that fits perfectly and it is a blessing beyond words.

So, today, we are awfully happy, a little nervous and very grateful as we start another chapter of this story we call our life. I am not sure what the next 2 1/2 months hold, but we are ready to climb this mountain and see where the path leads.


Comments on: "All the World’s a Stage" (6)

  1. Congratulations Em!!!! That’s really great. I love it when life gives us pieces of miracles 🙂

    • Thanks! Just a few months ago this was impossible, so it really is special. Hope is a beautiful thing, isn’t it?

      • Yes it is. Hope is what keeps me hanging on during the times when I’m stuck in bed for days, watching the world go on without me. Hope reminds me that I will soon be able to make my next appearance in it, however short that time may be ^..^

  2. Congrats Em, that’s awesome!!

    Must tell you: I totally misread the heading of this post as “All the world’s a seige” first time around. I think it says quite a lot about my mental state…

    • We have been through the siege portion of the program, so I know what you mean! In fact, I wrote a post last December about how EDS is like being under siege by barbarians, so, yeah, I am with you. But, there is hope and we are going to take all the good we can while it is in front of us! Hope you are doing well…

  3. AWESOME! As our lives and goals adjust, we can choose to give up, or we can choose to alter our preconceived notions of what life “should” be, and excel from there. I’m so happy to hear that you and Em have not only just done that, but you revel in even the small joys. THAT is what life is all about, IMHO. Thank you, again, for the kind shout-out, too. (((hugs))) We have a treatment trial going on right now, gearing up for the next one (it’s a biggy!), and outlining the steps needed to allow us to return to achieving things we have long since assumed we’d never have the opportunity to achieve. Hope abounds. xxoo

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