Skip to Content

Looking for the best info on potty training your toddler? Click here.

Did I really just say that?

by Jennifer Graf Groneberg (Subscribe to Jennifer Graf Groneberg's posts) Mar 20th 2008 11:00AM

Print Email More

I was recently speaking with my friend Sheri about how ordinary my life is, most days, and how surprising this is to me. But I included the disclaimer, "If you accept physical therapy and speech therapy as normal (which by then, I did: speech therapy felt to me like a really talkative play date, and physical therapy reminded me of Kindermusic classes, only with less singing.)"

As soon as I said it, I felt bad about it because of likening my experiences with therapies to typical-kid things, which is a very, very shorthand way of referring to them, and it circumvents all the time and emotional energy it took me to reach that conclusion. In the end, I did feel that way, but not in the beginning. I think that's why so many parents refer to parenthood as a journey: because you don't end up in the same place, emotionally speaking, that you started out.

When we first began the Early Intervention process with Avery, I was skeptical. I wasn't sure that all the paperwork and the forms, the bright toys and the early morning appointments, the diagrams and the books with titles like "Gross Motor Skills" and "Early Communication Skills" would help us. In fact, it all seemed like a great, big distraction from what I saw as the central fact of our lives--that nothing would ever be the same again.

And part of me was angry; I resented having to to these things (therapy always seemed to be scheduled in the middle of nap time, and no one had a good answer for what I should do with Avery's twin, Bennett, who was very interested in all the shiny new toys, but who wasn't supposed to play with them because they were for Avery.)

So my regret over making the statement about speech therapy and physical therapy may seem like a small issue, but it's an important one to me, because if there is a mom somewhere out there thinking that she doesn't feel like therapies are exaggerated play dates--the bubbles! the kazoos! pudding through a straw!--or a loud variation of Mommy and Me (I'm thinking here of finger plays and Ring-Around-the-Rosie and the tiny, child-sized trampoline) then I've missed the point. I don't want to cause anyone to doubt themselves, or their experiences. I only mean to encourage dialog about this kind of parenting, which is as full of ups and downs as anything I've known.

My experience is with a healthy child who has Down syndrome. Not every child with Down syndrome is healthy: sometimes children face heart surgery or other procedures, sometimes there is leukemia. These experiences include the landscapes of NICUs and PICUs, words like recovery and remission. Our stories intersect, overlap, but no two are exactly the same, and a story about Down syndrome isn't necessarily a story about any of these other things.

I want to talk about grief, too. In the beginning--that hot, smoky June when our diagnosis was still fresh and raw--I hauled myself down the twisty road that leads from our house to the shores of a freshwater lake and there, alone for the first time in the day, I cried and cried, flooding the bay with my salty tears, so many that I probably altered the lake's ecological chain. That summer, I spoke the language of loss, understood all the shades of gray.

But my grief grew away from me. Like my tears that slowly, eventually, finally became part of the rest of the lake, life absorbed my sadness. I began to see that there was so much else to do, besides cry; there were many more colors in my crayon box than gray.

And of course, I can't speak for anyone else but myself. But I came to feel that grief was a disservice, a way of dishonoring my son and all that he is, and my other children, and my husband Tom, and the people who loved and supported us, including the therapists, who spent their days working with our remarkable children. And the great big ball of the sun, brazen and gold, that kept rising every morning, even despite the fact that it would only, ultimately sink. It was time for me to rise again, too.

Comments (12)

Recent Posts

Reader Comments (Page 1 of 1)

How can I get my teenager to clean his room?
Teens are messy. Even if you point it out, they don't see the mess. Read more >>
Got a question?
Ask Our Therapist

Most Popular Posts

Horoscopes

Recent Comments