Tuesday, September 28, 2010


I was thinking this morning about why I chose to name my blog "A Different Family". Aside from the fact that my husband was pushing and pushing for me to come up with something already, (I threw out that title and it stuck), why that particular description of who we are? I think it may have to do with the fact that I was a niche writer for several years. That is, I wrote about a specific subject--namely disability topics--and I don't think I've ever thought of being anything else. Obviously we are a family living with a difference so I've always thought of us as different from our friends and extended family. In most ways, I suppose we're typical, but a child with a disability gives us a unique perspective about life.
For instance, because Cliff was our first child, my other children possess an understanding and an appreciation of people with disabilities that their friends do not have. I went from being shy and quiet to speaking out because I had to be Cliff's voice. Ken became an advocate and I think we both became that much more connected to each other.
So I guess you can say I named the blog what I did because we are different people than we would have been without Cliff in our lives. His life made ours more meaningful and purposeful. His struggles and challenges and successes are also our struggles, challenges and successes. If you are living, as we are, with a difference, the trick is to embrace it. Embrace the differences with grace and gratitude. It's all good.

Monday, September 27, 2010


"Thank you God, for all I have. Please bless Mom and Dad, Max and Olivia. Bless Grandma and Grandpa and all my family and my friends. I love you. Amen." --Cliff's prayer

I try not to think about the things I regret, but sometimes they just stare and stare at me until I acknowledge them. In this case, Jesus was the one staring me down in church last weekend. If it's ever happened to you, you know how unsettling that is. What happened was, I watched a young woman with Down syndrome receive her confirmation with some kids from my parish. She did a beautiful job and I was moved to tears as she recited her responses to the Bishop and proudly made her way back to her pew. At one time, my son Cliff, who also has Down syndrome, attended church regularly and participated in a religious education class. He loved it purely for the social aspect of it, but he managed to learn the Our Father and Hail Mary. I have a gorgeous picture of him on his First Holy Communion day in a pair of light-colored khakis, a green polka dotted tie, and a joyful smile standing in front of the statue of Mary. Or maybe it was one of the saints. Anyway, after the age of 13 we gave religious education the old boot because I just couldn't find anyone who knew how to teach a kid with profound difficulties grasping such abstract ideas as God and Heaven. Whenever someone referred to God as his Father, he'd look at us like we were stupid because everyone knows his dad's name is Ken!
As I watched Katie smile and wave at her parents last weekend, I couldn't help but wonder about what Cliff might have accomplished had I figured out how to continue with his lessons. What possibilities did I close off by taking him out of CCD? What friendships did I prevent just because he couldn't grasp the material being taught? There's just no way to know these answers. But I think if I really examined what I was thinking at the time, I'd realize that some things just aren't meant to be. And that's okay. I would realize that I did my best with what I knew at the time. We all do that as mothers, right?
I guess that will have to be enough.

Letting Go

"You will always have what you gave to love"--Beth Nielsen Chapman

Every day, my children break my heart. When I look at them, I don't just see the young adults that they are. In my mind's eye, they are four, still holding my hand, or seven, showing me the smile with missing teeth, or babies, looking at me as though they've never seen anything more mesmerizing than my face.  Once upon a time, they needed me more than they needed their friends, wanted my company more than they wanted their space, desired my attention more than they desired a phone or a car or a Facebook page. Ah, but that is the true irony of parenthood, isn't it? You bring them up so that they don't need you anymore.
I remember when people used to say to me, "Pay attention, write everything down, remember, because it all goes by so fast." I paid attention when I could, had no time to write every single memory, and remember perhaps a thumbnail of what has transpired in all these years. It just isn't possible. And now I find myself looking at the pictures of their childhood, recalling with wistful longing how I held them, read or sang to them, sat with them through countless episodes of Sesame Street, Power Rangers and Little Bear.
Last week's episode of "Hoarding" really resonated with me. A woman with three children couldn't throw anything away, especially toys and books and other things that reminded her of earlier times with them. She was so obsessed, she had even driven her husband away. He moved out three years earlier because of her need to keep everything and fill the house to bursting. One day, the therapist working with her asked her to repeat a phrase. It went like this: "I cannot bring back their childhood. I cannot bring back their childhood. I cannot bring back their childhood." As the woman repeated the mantra, her voice broke. And as I listened and watched the pain in her face, I understood and cried along with her.
I suppose I'm romanticizing those days, much like women do before they have children. You know, as if motherhood isn't full of dirty diapers, endless crying (the babies, not me! Well, maybe me.) and major sleep deprivation.
So it won't surprise you to know that now I treasure, with my whole heart and soul, these other, newer times with my kids. I'm not holding my baby daughter, but I have held her through a break-up and an unsuccessful bid to make the field hockey team. My middle child may no longer need to hold my hand, but when he shares his problems and worries with me, listening is a lot like hand-holding if you think about it. My oldest, well, he's another story. He will always need me, because God sent me a child with Down syndrome. Maybe, just maybe, God knew how much I need to be needed. I have to think that the love I've given will come back to me, as Beth so beautifully put it. I'll need to amend my first statement then. My children don't just break my heart. They fill it up too.

Tuesday, September 21, 2010

"If you are what you should be, you will set the whole world on fire. Let the truth be your delight...proclaim it...but with a certain congeniality." ~St. Catherine of Siena

I hate to talk about myself, but I love to write about what happens in my life. I especially love the idea of sharing my thoughts about my children, who are amazing young people, and my husband, the love of my life. But let's face it: no one's life is perfect and I have my share of frustrations and ridiculous crap on a daily basis. I'm the mother of two teenagers and a 25-year-old son with Down syndrome, so I'm here to tell you...crap happens. I decided to start a blog because it will be less time-consuming than therapy, fewer calories than the giant, 2-lb. bag of chocolate candies I bought from the Sweet Factory, and cheaper than online shopping. I hope that, from time to time, you'll be able to relate to my life and to my ruminations and viewpoints. I promise to try not to bore you to death. I promise to tell the truth (you'll have to trust me on that) so that perhaps, in some weird, voyeuristic way, we will be connected.  Ready?