19 Years Sick: New Dreams

Just Chillaxin' with Mr. G This Spring

It's the eve of my 'anniversary of getting sick' or my 'sickaversary', as my friend, Ellen, would say.

When our lives truly change in an instant, we don't forget it. 

June 18, 1998.

As I write this my mood is reflective, emotional, somber, grateful, and most of all, HOPEFUL.

Over the past 19 years, while clinging to hope that I might find some healing, many times things felt more hopeless than hopeful. 

Mom Prom: April 2017

This year, I feel hopeful that I am at the beginning of a new life.

I feel hopeful about finding new dreams and achieving some that have been on hold. I feel ready to let go of others.

Celebratory Dinner!

Tonight (since my actual anniversary falls on Father's Day and I'll be spending that with Dad), Mom made me a celebratory dinner.

We toasted to healing, to feeling hopeful, to being able to enjoy life together, to be free of the endless crises that dominated so many years of our lives, to having more fun and more adventures, to perseverance, to resilience, and to all good things.

Yes, That Would Be a Rhubarb-Strawberry Crisp

Recently, I turned to my mom and said: Would it be an exaggeration to say that I have lost all of the dreams I had ever hoped for after college graduation?

She said it would not.

With ICE CREAM!

A career, graduate school, vacations, being with friends, marriage, motherhood, living independently--all of the things I dreamed of when the world appeared to be my oyster. Not ONE of these dreams has come true.

Even the little dreams like being at friend's weddings or baby showers or reunions or meeting their children or learning how to cook or taking a class or all of the little things most of us do without a second thought mostly disappeared.

How would you feel if every dream you ever had was lost?

It makes me profoundly sad.

My Loves

It's hard not to feel that I 'lost' much of my life to illness. It's hard not to feel that it's not just a little bit unfair. 

It's hard to let go of some of the most precious of those dreams. But it's also time to let go of many of them, and it's getting easier to do so.

Dreams change and dreams evolve.

I'm ready for these new dreams.

This Year's Sand Dollar Finds--All While WALKING On The Beach

For the first time in 19 years, I'm increasingly able to enjoy life, even within my limitations.

For the first time in 19 years, I have enough energy to begin pursuing MY dreams and MY passions. 

I'm no longer only an observer of life. I am a participant in life.

I am an activist. I am an advocate. I am a fundraiser. I am a volunteer. I am dog mom. I am a friend. I am a daughter. 

I love people. I love dogs. I love nature. I love art. I love food. I love good books. I love TV and movies. I love the beach. I love nail polish. I love snail mail. I love to be a girly girl. I love dresses. I love pink. I love tea. I love music. I love texting. I love fireflies, butterflies and dragonflies. I love baths. 

I. LOVE. LIFE.

I never stopped having passions, I never stopped going crazy being trapped in a body that didn't allow me to participate in life. Meanwhile, I maintained and grew in my love of the many gifts that we are given on the Earth.

Being able to actually engage (with limitations) in my passions is what makes me so excited about what lies ahead.

Mardi Gras Mom Prom!

In almost every way (other than the fact that I am getting older), life looks a lot brighter than it did a decade ago. 

In reflecting on what lies ahead, I do feel that there is still time for me to find a life partner; to pursue my passions of advocacy, awareness, and fundraising; to train my dogs to possibly be therapy dogs; to be with friends and family more; and to just generally enjoy and engage in life more.

Beach Bums

Life is uncertain and fragile for all of us, and I am always (perhaps more than most) acutely aware that things could, again, change in an instant. I worry a lot about healthcare and money and losing a parent and getting sick again. 

(Dr. Rowe assures me the sky is NOT going to fall down on me again. :))

Feeling the Water On My Feet

I will always carry a level of grief and trauma that is unique and different from most people my age.

I will always be sad about lost dreams. 

And sometimes it weighs me down. A lot.

I have really hard days--emotionally and physically. 

Because, after all, I am still chronically ill. This is still a 'sickaversary.'

I often feel sad about not feeling well and still missing out on things.

19 YEARS is a really, really, really long time to feel like crap day in and day out.

Most days, though, I find that I am amazed that I can somehow wake up looking forward to what life has in store for me; feeling that even after this much trauma and loss I feel so hopeful about the future; feeling that there is still so much left for me to be and do in this life; feeling hopeful and thankful and blessed. 

The Sky's the Limit

So, today? Right now? I am grateful. I am hopeful. And I'm not just saying that because it's the cliche thing to say.  

I truly am, and I always have been. No matter how sick I am, gratitude and hope have remained central tenants of my life. 

I have been cared for and loved beyond measure. 

Endless Waves and Endless Possibilities
(Mantra, thanks to my friend, Karma)

I raise my arms to the sky and shout: I'm ready for this new life. I'm ready for new dreams. I'm ready for dreams to still come true. I'm ready to welcome what You have waiting for me.

Blessings,

And Happy Father's Day to my Dad--one of my biggest supporters, who always, always, always stayed hopeful. 

Emily/Champ