Show Your Hope!

Life looks incredibly different from the 22nd story window of MGH.

The world below goes on without hesitation and doesn’t wait for you or anyone else to be ready to join in.

And while it’s hard to watch the moments pass, there’s something to be said about stillness…

Stillness isn’t something that comes easy for me…but 4 days of it is enough to bring clarity and perspective about the things that really matter in life…

And while I find no great pleasure in being in the hospital (again), there is much to be said about finding the beauty even in the difficult moments….or, as others would say – ‘learning to dance in the rain.’

Sometimes, it’s hard to find peace in the storm…..

But nothing is impossible.

I haven’t had a great few weeks physcially -and I can honestly say that it’s getting old being in and out of the hospital so much.  I probably held off on going in longer than I should have this time around,  but I was trying to manage it on my own at home, which I was clearly unsuccessful at.

The good news is that MGH knows me so well and my crashes appear to have been documented well enough, because this is now the 2nd time I’ve come in and the process of triage, registration, IV/Labs/EKG, nurse, doctors and admission decision have come in less than an hour and a half (the wait for the room….not so much!).

I’ve had great experiences at MGH – but, by far, my experience with the nurses and doctors on Phillips 22 has been the best.  I haven’t been able to avoid the zillion pokes for labs and such…but they’ve been fantastic and my numbers have finally normalized. The neurology team was awesome and have worked hard to find solutions for some of the issues I’ve been having.   We tried Cpap and Bipap last night to help me breathe better, but my body did not like either – so we’re back to the drawing board on that.

There are other options, and the respiratory therapist was in this morning discussing them with me.  I will have another EEG today and a long term EEG out patient as well.  We’ll be scheduling a sleep study to determine the exact cause of my respiratory issues at night…which will be better than the monitoring that they’ve done overnight.  This team is well oiled and we’re making progress….just slower than I’d like!

For now, my focus is getting back home…..

And enjoying all of the beauty around me, because truly – even in the worst of times, there is beauty and precious simplicity to be found.

I have definitely had some time to think, and – despite how frustrating it is to never know when the next crash will hit, I do believe that everything happens for a reason -even if I don’t understand it, want to play a part in it, am not ready for it…..Nothing is by chance.

I don’t think I have it any worse than anyone and I know I have it better than others – so I count every blessing that I have and I give every moment my all.

So it is on that note that I continue to move forward and keep my eyes on the beauty in life – keeping in mind one of my favorite phrases from Ani Difranco:  “Cause when I look around, I think this….this is good enough. And I try to laugh at whatever life brings. When I look down, I just miss all the good stuff…and when I look up, I just trip over things.”

My hope is to go home today and catch up on some snuggle time with the kids, catch up on quality time with Ralph, visit with my houseguest Chelsea and soak up as much time with her as I can (I’ve missed 4 days with her already!),  make more memories with my family, AND to celebrate my mom and aunt’s birthday (which I missed due to being in the hospital).

Speaking of family….did I ever tell you how amazing they all are?  I can’t thank my mom, dad, aunt and neice enough for all their help over the past few days (and, quite frankly…years).  It doesn’t matter what time of day or night it is, if you need them….they are there.   What we have is quite special and I am incredibly grateful for that.

Like I said, NOTHING is by chance.  I do believe that God gave us each other because He KNEW we would need each other.

I am looking forward to the warm weather, the family time, and all of the 4th of July events that are coming up.  We’ve actively participated in the town’s celebrations for the past 5 years and I have to say, it’s one of my favorite things to do!

So here’s to the beauty within the thorns…..

Here’s to the song within the rain….

Here’s to the light within the dark….

Here’s to the calm within the storm….

Here’s to the hope within the unknown…

Yes, the room with a view reminds me how precious every moment is…

Being 22 stories up gives everything a new perspective…one that I hadn’t expected but am grateful for.

 My hope is that by sharing my journey with you, it won’t take a view from the 22nd floor of MGH for you to see life in a different hue.

Love and Light,

Stefani