The beauty 

By Ramona Joyce

When I found Families for HoPE, Leah Faith was 2 years old, and they had just had their first family conference. I hated that we had missed it because I needed it. I was determined we would be at the next one in 2008! I remember getting an email from Leslie that I was the first to register for the 2008 conference. I had no idea at that time just how much I needed it.

The bond I felt immediately with families I’d never met before is impossible to explain. It was beautifully overwhelming, emotional, spiritual. Families that were on the same journey of hope as my family.

I remember clearly sitting in a conference room with Dr. Eric Levy speaking and I couldn’t tell you everything he said, I was caught up in my surroundings. My daughter is very noisy but there was an older girl, Kristen, who was noisier and I loved it! There were suction machines running, children being fed through tubes, seizures happening, some crying, squealing and it was all so beautiful to me. The beauty of being surrounded by families and people who were not put off or grossed out by each other’s children is unexplainable in my world.

I was given information at that conference that I needed. But I was given so much more, I was given Hope!

My Leah Faith was 4 years old then; she is 12 now, and we’ve been blessed to attend every conference since then. My oldest daughter, Sadie was 9 at the first conference we attended; she’s 17 now. She bonded immediately with all the children with Holoprosencephaly and with their siblings who are on the same journey as she is. She drops any plans with friends because being at the conference is more important to her. It has been life altering for us as a family!

I realized at the 2014 conference that I’m now a “veteran” to some of the younger moms. Just as I pull from the experience and wisdom of the moms with children older than mine, they’re looking to me, Leah Faith, and even Sadie for their hope. The families whose child has left this world, bring such grace, and yes, more hope to all of us on this journey. It’s humbling, it’s beautiful, it’s family!

The sad fact is that we don’t know which children will not be with us at the next conference, so we soak up every single second that we can. We laugh, we cry, we learn, we celebrate, we embrace each other, and we embrace the journey. We would not be able to have this experience without Families for HoPE, Inc.

You can help make the 2018 Family Conference on Holoprosencephaly a reality for HPE families with a donation to Families for HoPE.