Hi Beautiful!,
Your image is forever captured in countless photos and videos. Your voice is forever recorded in my memory. Your smile is forever radiant in my heart. Your person is forever burned into my soul.

I will never get to see you age. Never see wrinkles take form, hair become grey, penmanship decline. I will never get to see you become frail. I will never see you get old.

When you first became afflicted with CJD, and before we knew of it’s inevitable conclusion, I remember thinking if this current physical state of yours was going to be what I would live with for the rest of our lives, that would be ok. I was ready for it. I was ready to be for you what your dad has, and continues to be to this day for your mom.

My purpose in life was changing and I was ready for it. I was ready to serve you in sickness and in health for the rest of my life. I was ready, and would be happy to do it all, for you. I was ready for that, but I wasn’t ready to be without you. We didn’t know what would transpire, how that chapter in life would conclude, but we had prepared ourselves for the worst just in case.

It hurt on the day we were confirmed of your condition. Yes, I hurt because I would lose you but mostly I hurt because I knew you would worry about me and my future without you. I have my ups and downs on any given day and never know what will prevail strong for my waking day. My day…another day without you. Did you hurt as much as me? I sure hope and pray you didn’t experience hurt in any stage of your illness.

Throughout the accelerated illness you remained strong, and your strength helped me to be strong. Strong, for you.

The days for me lately have been tough.  On Saturday 2/28 I leave to DC for the CJD Advocacy Day at the Capitol.  We (a small number of folks who are attending and have been tangentially affected by this disease) will meet with members of the CJD Foundation and prepped for our individual scheduled meeting with a member of Congress.  On Monday 3/2 I will present my story to this Congress person and convey the importance of continued (and hopefully increased) funding towards on-going research for CJD and Prion-related diseases.  It will be a big day for me, certainly heavy with emotion.  I’m nervous, I’m scared. But I will be suited-up and hopefully strong in will as I continue to live my life to help you and others in any way I can in this fight against the horrible disease that took you away from me way too soon. I want to be strong for you still.

My life with the Smoopies is an empty life without you. I am doing all that I do for reasons extending far beyond me. I am doing all that I do for you, for others who have and yet-to-be afflicted by CJD. And in my doing so, I proudly carry a torch of hope and love for our loved ones. For those who will never have opportunity to see the ones we love become old.

For those we love who will forever in our hearts and minds always remain forever young.