Fuck Rare Disease

Up.

Down.

Good.

Bad.

Trigger.

We all have them.

In every moment. 

Life.

Up.

Down.

Good.

Bad.

Trigger.

July 4th weekend is one of those for me, for us. 

July 4th weekend, 11 years ago, we were first introduced to VRK1-PCH1A.

At the time, we didn't know the name or the letters.

July 4th weekend, 8 years ago, we were re-introduced to VRK1-PCH1A.

This time with the name and letters.

Not understanding what this meant for the now and future.

Having no idea what this all meant for us. 

Having no idea, this is where we would be

11 years later.

8 years later.

One thing I know for sure is we are better for having Ian in our lives. He was so much more than VRK1-PCH1A. He was Ian. Our imperfectly, perfect son. All boy. Funny. Smart. Caring. Pain in the ass. Courageous. He was all of that and so much more. 

One thing I know for sure is we are all better for having Becca in our lives. She is so much more than a Twinless Twin. More than a sibling of VRK1-PCH1A. She is our imperfectly, perfect daughter. All girl, well maybe not. Smart. Caring. Courageous. Resilient. Empathetic. So much more. 

VRK1-PCH1A has impacted our lives.

VRK1-PCH1A has changed us. 

We are forever changed by Ian, for living, for fighting, for dying. 

We will never be who we were before.

Before 11 years.

Before 8 years.

Before...

One thing I know for sure, I will always say FUCK RARE DISEASE. 

One thing I know for sure, we are who we are because of our family.

The silver lining.

This July 4th weekend is hard for me. Last night, I was sad. Angry. Not at Ian. Not at Becca. Not at Brian. Not at myself. But still angry. My broken heart was missing him. What I would give for

One more look at his face.

One more smile.

One more cluck.

One more sparkle in his eyes.

One more hug, even the ones you had to help him put his arms around you (those were the best)

One more I love you.

One more... 

My heart does find happiness and joy. I don't feel guilty for those things anymore, at least not all the time. Everything is not bittersweet. 

I will always say 

FUCK RARE DISEASE