You Must See...and Share

I've been keeping this blog topic on deck since my initial entry. For some reason, today felt like the right day. It's been a rough week. Perhaps this is my medicine. In other words, saddle up---this one's going to be long!

As I've written before, the journey of life can be a rough one. It is often filled with twists and turns that we never expect. Joys that we could never have dreamed of. Sorrows that we could have never imagined. Even in the wake of the sorrow, however, there are the people along the way who carry you through. They make life bearable when it seems unbearable. They truly work to make a difference.

I am more than forthcoming in saying that I struggled intensely when Camille started rapidly losing her vision shortly after her arrival home from an 11 week quest for survival in the NICU after birth. My tank was empty. My fuel gone. I was running on the fumes of fumes. I don't know how Sam and Hannah's deaths affected the way I dealt with Camille's visual impairment, but the truth is, it doesn't really matter. At that point in time, I really felt that I couldn't possibly take any more bad news, yet the news came anyway. I now know how it feels to be kicked when you're down.

To be truthful, I was scared out of my mind. I had never met a blind person. The only knowledge I had about being blind was how scared I would be if I lost my sight---after all, as a sighted person, I get 80 -90% of my information through my vision. What would I do if it were gone?

I was embarrassed that I was scared. I felt like I should have been a warrior for Camille, but inside, I was truthfully feeling very wimpy. I hated the acronym ROP (Retinopathy of Prematurity) and the fact that it was blinding my daughter. I hated the fact that I felt scared all day everyday. I hated the fact that I felt so alone. Never did I see a blind child walking along the street. Never did I see a mother in the grocery store with her blind baby. Nope. Blindness in general is a low incidence disability. In children, it's really rare.

One of my first glimmers of hope came when I finally got brave enough to seek out some list-servs for parents of children with visual impairments recommended to us by Paula Korelitz, the outreach director at ROPARD's Low Vision Center in Michigan. I lurked for weeks and weeks...until one day, I read a message from another mother whose child was just diagnosed with a severe visual impairment...and I realized that she, too, was sad. Scared. Lonely. And then all of the veteran moms on the list chimed in about feeling the same way shortly after diagnosis. My heart flew that day. I was not alone. Slowly, through many avenues, I became connected with many blind individuals, parents of blind children, and people who work to improve the lives of people who are blind. And this has empowered me to be able to empower Camille.

Last summer, we got the amazing opportunity to meet some very incredible people who go to work on a daily basis to make life better for individuals with visual impairments and their families. They were undertaking a project that gets right to the core of what I needed when Camille was newly diagnosed with ROP: a way to connect with other families who had been through what we were experiencing, a way to see that there is hope, a way to know that life goes on, a place to go to when I have questions that only others who know about visual impairment can answer. The American Foundation for the Blind (AFB) and the National Association of Parents of Children with Visual Impairments (NAPVI) teamed up to create an amazing website, FamilyConnect.

Please visit it. http://www.familyconnect.org/

The site was officially launced in April of 2008. It is amazing. It has message boards and resources. Articles and videos. Stories and insight. Hope and healing.

NAPVI's national convention was in Omaha last July, shortly before Camille turned three years old, just weeks after her enucleation. Simply because we live in town, we were asked if the staff from AFB could come out and get some footage of Camille in our home. Through this experience, we met a group of amazing individuals who inspire me in the work they do. They inspire me in the people they are. They inspire me in the way they live. Three people in particular, Caitlin McFeeley, Kelly Parisi, and Paul Moniz left impressions with our family that will last likely eternally. Their passion for their work and their compassion was amazing. Caitlin so touched us that we still keep in touch with her.

Please check out their work, the work of many, many people at AFB and NAPVI. It is an amazing resource. Even if your heart isn't all that excited about it, browse.

You never know...you just may meet a family who really needs to be connected to FamilyConnect.....sooner rather than later.

While you are there, view the video about Camille's story.

Click on videos in the first paragraph of the home page, and then click on "O'Neill family" or follow the following link:

www.familyconnect.org/videos.asp?documentID=3986

(Be patient, it takes awhile to load). (Update: Camille has come so far since that video! She's conquered her first year of preschool, is walking, running, talking and singing even more!)

If you want to be moved, look at the other vidoes. There are amazing families there that have a lot to teach you if you are willing to learn.

And all the while, appreciate all of the people who were committed to making this happen for families who really need it.