I am the first to admit that March 7, 2007, was one of the toughest days of my life. I sat, holding the baby that only a week prior was declared “mine” in a court of law, while a neurologist told me my son had a diagnosis that changed his life forever.
I felt numb. I felt like I couldn’t breathe. I felt alone.
I bought chocolate. I bought wine.
I had to tell my mom…my best friend…my daughter.
All those years ago, I was sure that getting over the grief and desperation, and finding the point where I felt that I was educated enough to be an advocate was a huge achievement.
My Grandmother used to say, “Little children, little troubles…Big children, big troubles!” She was so right on so many levels.
Only in the special needs world, it just gets…weird.
Jack is 5. Developmentally, he’s somewhere between 2 and 3, but occasionally is “on target” for random things. You know, like his extensive knowledge of all things Star Wars. He should start kindergarten in the fall. However, if he goes to public school, he will be placed in the “special” classroom, and only be able to be mainstreamed during PE and recess (both of which he cannot participate in). Every “normal” private school I contacted refused to even consider him because he has too many needs. He’s a liability. The “special” school we are looking in to…he might even be too disabled for them!
I feel very much (again) like I did all those years ago. I feel alone. I feel scared. I am anxious. I want what is best for him without compromising. He deserves the best.
Other parents I have spoken with…they don’t get it. And you know what? I’m not even sure I get it!
(at this point, I could also begin a terrific rant regarding health care coverage for these children, but that would probably incite riot, and I’m not up for that these days)
When the grass seemed greener on the other side–I appreciated the dirt and lone flower growing in our own garden. When the road was long and weary, I found hope and light in darkness and shadows. Now, as I watch my Sweet Baby Love turn older, I am once again looking for the good in the seemingly horrid. I find myself staring at him, praying for him to not know the cruelty of the world–knowing that’s too naive of me.
I won’t back down. I won’t give up. I will always have hope…he’s my son.
Pass the chocolate and wine.