Sunday, May 3, 2015

A Hopeful Future

For proud & curious family and friends -----  I'm sharing my part of the segment which I participated in with 3 other amazing Parents at the NPCQIC learning session on May 1 2015. 

(Intro)
Today is the one year Anniversary of my daughter Cecilia's Fontan. I can't think of a better way to celebrate that than to inspire, disect and embrace hope with fellow parents, practitioners and friends. My name is Sarah Vinje. I am a member of the Transparency Workgroup. I'm a stay @ home mom to my five daughters. Two of them have Congenital Heart Defects. We live in Maryland. I recently became a Northeast Regional Coordinator for Linked By Heart. For those of you who may not know, Linked By Heart is an expansion of Sisters By Heart. Our searchable database serves as a tool to help HLHS families build peer to peer connections. 
My journey has come full circle.

                             ♡

Somewhere, in one of your centers, an unsuspecting mother will soon hear that her baby has a heart defect. She'll hear that the baby needs surgery if there will be any chance to live. She'll soon be grieving in a way you probably can't understand.

I was an unsuspecting mother once. I let go of an idea that my unborn daughter was healthy.  A deep despair quickly filled in the empty space where that idea once thrived.
I was offered support through Sisters By Heart. Their letters described my exact feelings. I read each of their stories and became inspired. This connection helped me recover what I had lost.
My hope began to take the shape of a will and determination to be an effective advocate for my daughter. With my voice, I can defend her. Hope supported my new idea (a dream) that my daughter would fight to be healthy, and she will win.

Cecilia was born on June 29, 2012. I could reach out and touch her. I expected hope's light to only grow brighter. To illuminate every shadow. All of the doubt I was carrying. It attacked me whenever I was off guard. Like in the middle of the night when all I wanted was to sleep...but the shadow just got louder and louder.
- What if she never sees outside
- What if she doesn't make it.
- What if the Rankings are the difference between her life and death
Fear is at the core of every sentence that begins with "What if". A fear that fed my distrust and worry. I was to weary to offset the damage. I thought... maybe if I'm prepared for the worst it won't hurt as bad.

I struggled to sustain hope. In addition to my lingering shadows, Cecilia's complications had their way of corrupting it. Major setbacks injured my hope, but even the little ones were a threat. They just kept adding up.
It didn't take long to become overwhelmed. My stress was within me and around me. I panicked and then I detached. It hurt me that I couldn't protect her. I felt defeated, and so I shut down. I would stop fighting for her. I would then avoid engaging at rounds. I thought, What's the point?  I had lost my hope. I couldn't see the light or the way out of this.
I didn't reach out for help, but it showed up anyway. Heartmoms helped me find my way back.
I am comforted knowing a support network will be there for me anytime I have to confront the darkness again.

Cecilia's strength in the face of adversity  has taught me a lot. She's taught me that hope can carry my weary heart into places I've never imagined. I witness her story transform perspectives the same way stories had impacted and empowered me.
I had learned that hope wasn't perfect. Hope is fragile. It's a light that could grow brighter... or dimmer. These lessons keep me grounded, and help me in my role with Linked By Heart.

Back then I had to rediscover my hope in many new shapes and forms. To stay true to my dream but to make sense with my journey. Today, my hope is more complex. Aiding my daughter in her fight to stay healthy is only a small sample of my hope. 
                         
My hope nurtures a dream that centers will improve care together, becoming equal in quality and void of rivalry.

My hope cheers for the success in all of your centers...for the advancements made in both our collaborative and others'.

My hope envisions a time when parents can cease to worry whether or not the outcome for their child will depend on the hospital they chose.

My hope drives me to help strengthen our heart community.

My hope instills me with the courage to be vulnerable and vocal...
      
...Because my hope understands the healing power and potential behind communicating our experiences.