Dear Unsealers,
I remember that day like it was only yesterday. A gut-punch so powerful that I felt the life leave my body. Pain so unbearable that I thought my heart would break into a thousand pieces. It was the day a doctor told me that my son had an incurable rare disease that would rob him of his eyesight. And possibly his life.

It was a beautiful spring day in May of 2010. My son was only 4 year’s old. Birds were singing their beautiful uplifting melodies. Flowers were blooming with vibrant breathtaking colors of the rainbow. And I, a first time mom, knew then that I would never look at the world the same ever again.

The doctor did not sugar coat the news. Instead she delivered the devastation with such aloofness that it rolled over my body like a steamroller. “Your son has a rare syndrome called Bardet-Biedl Syndrome (BBS). He will most likely be blind by the time he is a teenager. He may need a kidney transplant due to life threatening kidney failure. He will never be able to have children of his own. There is no cure.”

After hearing the word “blind”, I shut completely down, as if I had heard a cancer diagnosis. I heard not another word. I was in a dark tunnel and could not escape, my husband holding me up like a concrete wall.

We went home and grieved. Grieved the loss of the future we had hoped for our son. Grieved the loss of him ever attending college and having a career. Grieving the loss of him ever having a wife and family of his own to love him. Grieving the loss of the possibility of grandchildren.

At that time, there were no Facebook pages for rare syndromes. There were no family support groups to turn to. We were all alone in this desert trying to help our son with a rare disease that affects only about 1 in 150,000 people.

We were lost in every sense of the word.

In the beginning, we only told a few close family and friends about the diagnosis. We needed time and space to digest and decipher the news ourselves. After all, the hopes and dreams we had for our son were now shattered like a mirror into a million pieces.

But the day came that we realized that our hopes and dreams were just that, ours. Not my son’s. The dream of him becoming a doctor or dentist or college football player like his dad were all in our master plan. Not his.

It was then that we realized that God had another plan, to use our son, and us through him, to reach out to the world about rare diseases and autism. To help bring awareness and acceptance to those who do not have a voice.

I started with a blog and Facebook page called “Hanging 11 with David,” to share our journey with Bardet- Biedl Syndrome and autism. I started writing stories about the good, the bad, and the ugly of day to day life with a child with special needs. I started speaking with civic groups, law enforcement officers, politicians in Washington DC, medical meetings and conferences. Basically to anyone who would listen to our story. I started moderating a telephone support group to be a sounding board for parents of children with BBS. That telephone support group now reaches all continents.

And then the grief lessened. Each day, a little by little, we saw sunlight beaming into that dark tunnel we had found ourselves in.
Somedays I hardly recognize the people we are today. Our son is thriving. He is truly a happy and loving soul. Sure, he still has bad days. Days where we all just want to crawl underneath the covers and scream, “Why him? Why us? But those days are few and far between now.

I often say that God knew that my son needed us and that is why He sent him to our family. But God also knew that we needed my son just as much. He has taught us to slow down and cherish the smallest things in life, like the simplest of milestones.

He has shown us our true friends and family. He has shown us what is truly important in life, and the things that are not.
No, it is not the life that we had imagined and dreamed of. But in many ways, this life of ours is even better than we could have imagined.

Yes, we took the road less traveled, as it was the only road presented to our family. But we never looked back. We will never see the world the same again. And we are all the better for it….