When I built this website two months ago, it was beyond emotional. I did all the writing over 6 hours in the middle of the night and spent the next night adding photos and editing it like crazy. It was the first time I was addressing our new normal, honestly acknowledging it as such, and accepting it to the point that I was putting it out there for our people and our world.
Writing about it was much more difficult than I had expected. But it was nothing compared to gathering and editing the pictures of our beautiful daughter and remembering what our lives were like before FOP (even though it was there all along).
Sure, we thought we had typical parenting worries; but these were nothing compared to what we are living with now. I wish I could go back in time, hit myself over the head with Raina's Elsa doll, and tell my perfectionist parent self to chill out and just enjoy being one of the lucky ones.
Raina at the Targhee Bluegrass Festival in August 2015
Those pictures were bittersweet reminders of what it was like to live carefree in Colorado, playing and climbing and hiking and running with no real worries or concerns, and it started a flood of emotions. Those years were amazing and all three of us would give anything to have just one more day of living without the knowledge of FOP and its implications.
Fortunately, Raina was diagnosed after the gene was discovered (10 years ago today!), and just 2 months after a critical discovery was made at the University of Pennsylvania research lab that gives even more hope for an effective treatment and hopefully a cure (read about it here and here).
These two milestones in research for the disease were critical beams of hope for Raina's entire tribe - and they were the primary reason we were finally able to sleep days (and weeks) later. The grief was unbearable for us. I can't imagine what the diagnosis must have done to parents and patients before 2006.
We are so thankful for the FOP community. Words couldn't even begin to express our gratitude for their years of DEDICATION AND ACTIVISM.
Or the love, support and strength from our family, friends, and even strangers. It's been incredibly humbling and heart-filling. You all know who you are and we are the luckiest people in the world to have you in our lives.
Or the hours of emails and calls from other parents, like Rory McCloskey Otto, of other amazing FOP children.
Or the world expert on FOP, Dr. Fred Kaplan, who called me - while on vacation - within 5 minutes of my initial email to him about Raina's diagnosis. He texted me later that evening and offered his cell number for use anytime I had questions or just needed to talk. I try not to call him too much, but since that day (and the half day he spent with us free of charge two weeks later in Philly), he has been beyond patient and supportive.
Dr. Kaplan and Raina discussing the circus animals on his tie. January 22, 2016
We are very lucky compared to so many others.
While Raina has a rare disease that has devastating implications, she is still a happy and healthy girl despite the FOP. She is much better off than the millions of other children living with terminal cancer, starvation, lack of clean water or shelter, and terrible abuse and neglect. She is surrounded by an incredible bounty of love and most of her family is less than half a day's drive from her princess bed. For these reasons and many more, we are incredibly lucky.
So the plan was to write monthly updates for those interested in how Raina and her family were doing, as many had expressed that they were but did not want to make us talk about it all the time while it was still fresh. We were still adjusting to the fact that the rest of our lives would never be the same and accepting that fact with strength and patience. It was draining.
It's been tougher than I expected to write the email newsletter and monthly updates I had planned. But I'm getting there.
We are head over heels in love with this amazingly rare, beautiful little girl and continue to embrace our gratitude for everything we have. Writing about it is getting easier by the day.
December 20, 2015, was the day Raina was diagnosed. Today is FOP Awareness Day and the 10-year anniversary of the discovery of the FOP gene. And while we were initially angry at our pediatricians, orthopedic surgeon and every other specialist we saw over the years for not being aware of the disease, we are now joining the FOP community in working hard to spread the word and increase early diagnosis and financial support for continued groundbreaking research.
Raina Shines on the day she was diagnosed. We were a mess.
In the meantime, we continue to be grateful for our little place in the world, our four carefree years with Raina before FOP, and the many ways this amazing little girl will continue to change the world.