that no one will ever feel lonely like we did.
When Lilah was diagnosed, at 18 hours old, Dr. "D" told us that "God didn't make these eyes right" and "You are at the beginning of a very long road." He did not hand us any resources, tell us of any services, nor did the hospital or our pediatrician. The phone calls stopped. We sat, weeping, alone in the hospital with just one nurse that came to check in on us. No social worker...nobody. I thought this was what happened. You find out your child is "different" no one knows what to do...so they ignore you.
For 5 LONG months we mourned, grieved, cried, prayed, wept, felt alone and lost without anything but our faith in the Lord. Friends and family tried to offer some emotion support, but no one led is in the right direction with therapies, services, medicaid, disability, etc. No one told us simple words that would have gone a LONG way...they could have said, "Yes, she's different. Yes, she will be delayed. Yes, she will struggle...BUT...she will be ok and you are NOT alone."
Once the initial shock, awe, and "what do we do now" set in I remembered Babies Can't Wait.(BCW) My friend worked for them and I knew it was a service for disabled children. But that was about it. I had NO idea, was never told, suggested, or given any idea that Lilah would be delayed due to her Visual Impairment.
I don't want anyone to feel pity for Lilah, for us, etc. What I want is to make change. What I want is tell my story and make sure that NO other parent or family feels as LONELY as we did.
I believe that someone...anyone could have...should have....given us a better direction in the beginning. We cannot go back...but we can ALWAYS move forward.
I am committed to re-tell my story over and over until change, in this city, is made.
As the Lord would have it...HE has supplied me a way. Through Facebook....and a chance meeting at Backus Memorial for therapy....I met with Katrina Laygo of Something Special Magazine , here in Savannah, Ga, and have shared a portion of our story with her. She is on a mission, with me, to make sure that no other Mom feels like we are ALONE!
I am determined to help other parents know that no matter the circumstances, no matter the diagnosis... Someone IS there and will be there to help you on this path.
The Lord gives us our children, the RIGHT children, for a reason....Thank you God for my reasons!