The word lonely by its definition means, “affected with, characterized by, or causing a depressing feeling of being alone; lonesome.” It wasn’t that I was alone, or even that I was depressed all the time. For me lonely meant being lost. Lost between Italy and Holland. Lost between what to do and what not to do. Lost between knowing and not knowing. Lost between a mother and a special needs parent. It was a feeling of never fitting in anywhere, never feeling comfortable in any place except within myself. For years I was consumed with everything about my little girl and even though I worked hard to educate myself and advance my career, I always came home to the same feelings and issues. Even though I made friends and had acquaintances, I never really opened myself up to any of them. I felt the most comfortable with other ‘special needs’ moms. They were my community.  It was like we instantly connected without even saying a word. We knew what it was like behind closed doors and we never worried that the other person was ‘judging’ or questioning what we were doing as parents. But none of us ever seemed to have time for a social life. We were always busy dealing with our children and the only time we were together was when we were sitting in the bleachers watching our kids at Special Olympics. I spent a lot of time sitting on those bleachers sharing stories and just connecting with some of the most amazing and resilient individuals. 

But, I was lucky in that I landed in a place where a group of women pulled me over to their side. They were the ladies of Darby House and I contribute part of finding myself to them. They brought me out from the ‘shadows’, so to speak, by including me in their group. I discovered another side of myself……one that laughed, sang, danced and generally acted like a silly child. They included me in their Girls’ Night Out adventures and I even went along on several weekend getaways. Those times were so important to my growth as a person and they allowed me to separate myself from the world of my little girl if only for a few days. I began to realize the importance of friendship and the power of laughing. “Through humor you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation may be, you can survive it.” (Bill Cosby). To this day, laughter gets me through most everything and I’d much rather laugh about anything and everything than the alternative.

Laughter came easily when I was with the ladies of Darby House, but there were times when it was much harder to come by. My Big Girl was maturing and we were faced with so many different issues than when she was younger. She wasn’t a wild tornado anymore and instead it seemed that she was being consumed from the inside by her fears and frustrations. We weren’t ‘lucky’ and I could see that even though academically she was ‘stuck’ at a level far below her age, she was still experiencing many of the things that a young girl her age would face. She knew she was different and she knew people were talking about her or looking at her. I know this because she would tell me so. Even with her limited vocabulary, she would would tell me. She would tell me through her screaming when she was alone in her room. She would tell me through her ‘talking to herself’ when she thought no one was looking. She would tell me through her anxiety about being in public. She would tell me by wearing a coat everywhere she went, or by wringing her hands, or by rocking in her seat, rubbing her hair, or by constantly picking at her clothes and herself. And she would tell me through her words and that was what hurt my heart the most; “I don’t like it here. I don’t want to go. People are looking at me. People laugh at me. There are too many people here. I don’t like it, mom.”

And, so, despite finding my laughter and letting myself open up to new friendships, the Guilt returned. How else was I supposed to feel about this new phase? How else was I supposed to handle this new Truth and move past it without hurting inside for HER? It always came back to me and the way I felt about all of HER issues. They were all my fault and I struggled again with so many decisions. I hesitated to try antipsychotic medications because there were always side effects…..and I felt Guilty. I hated having to consider the fact that this was more than just ‘mental retardation’ and that now it could be so much worse…..because I felt Guilty and I hated seeing her so conflicted, so anxious, so depressed and so Lost herself…..because I felt Guilty. I was her mother and I was supposed to be able to take care of her…….and I didn’t know how to do that………and I felt Guilty. But, nowhere in the books and rhetoric about being a special needs parent did I find how to handle the Guilt and so I did what I had done in the past and I pushed myself to learn more. I went back to school. If I couldn’t help myself then I wanted to help other parents. I wanted to be there when they learned about their child’s disability and I wanted to be the one to tell them because I knew what it felt like to hear those words. And that’s how I found another piece of myself that I had dropped along the way all those years ago. If I couldn’t help my Little Girl, then maybe I could help someone else’s.

And, so, the years of the Growing Up went by and we tried the medications and we didn’t. There were times when we accepted the ugliness because we felt horrible about giving her ‘those’ pills. Both Boy and I struggled accepting that horrible Truth. It’s truly difficult for parents of children with disabilities when it comes to medicating their child. Because we’ve all been on this roller coaster ride with them; going up and down and up and down and we’ve gotten used to the ‘downs’ because we know if we just wait, we’ll be on our way up again. So,Boy and I rode that roller coaster up and down with our Girl for several years. We grieved for her and all that she was going through and when she abnormally attached herself to Boy, we let her and we dealt with her obsessive-compulsive behaviors because she had nothing else. We simply wanted her to be happy; she deserved to be happy. It wasn’t that we were giving in to her, we, along with other parents, just did what was the most uncomplicated for ourselves, for our families and for our child.

I never thought I’d see the day she’d know that she was different.

I never thought I’d look into her eyes and see the anguish. 

I never thought I’d see the day she’d know that she was different, 

I never thought I’d see those tears and feel her pain so vivid.

I’d always hoped she’d never know the thoughts in people’s heads.

I’d always wished she’d stay a child in peaceful bliss instead.

But who can stop what’s meant to be and the feelings she has inside?

And who can save her from herself as she makes her way through life?

No longer a child with an innocent mind,

Her carefree childhood left far behind.

A woman now with soaring fears; 

Insecure, anxious and full of tears.

Intense emotions that petrify,

A mother who’s lost to answer why?