Did I really just say that?
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.
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Reader Comments (Page 1 of 1)
Niksmom 3-20-2008 @ 11:13AM
Being so far on the other side of my own grief and anger now, I guess I had not seen the interview comment in the light of what a newly diagnosed parent might take away. I love your thoughtfulness and your generosity in making certain that all perspectives are considered. It is one of the things you do so well and which allows your writing to touch a chord with nearly everyone. I envy that and aspire to it.
Yes, it is an odd life we lead with our own brand of "normal" —which in our household includes such things as feeding tubes, communication devices, and lots of medicines right alongside the toys and giggles and snuggles. And it was a journey for it to feel at all normal, that's for sure.
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Jessica 3-20-2008 @ 12:14PM
I think part of what makes you so amazing to read is your obviously well thought out assessments. It seems to me, as a reader, that your whole life is so well thought out, so patient, and so introspective. This post just lends more credence to that idea.
And....."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." I mean, geez Jennifer, you're just amazing.
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ltmslov 3-20-2008 @ 12:24PM
We have just begun our journey into early interventions, pt, ot, speech therapies, play therapies. Our little man seems so "normal" most of the time. Sometimes you just want to pretend it all away; perhaps if you pretend that it is all "normal," it will all be "normal." We too have other children, 3 and 4 year old girls, who don't understand the constant appointments and medicines or what seizures mean or ACC; how do it explain it all or do you? We just tell them that babies get checkups alot; our little man is only 5 mos right now. I know pretending it is all normal won't make it so but celebrating and enjoying all that is now "normal" and victories for us is important. Perhaps that is enough for now.
Thanks for you post . . . it helps "us" not feel alone.
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sarahs 3-20-2008 @ 1:39PM
Really, i think your grief was mourning a dream you had. You dreamed one thing. Reality gave you something else. And sometimes, it's difficult to embrace and accept reality. And so, I guess, a grieving process is necessary as you let go of your dream. You grew from the experience. You saw it really wasn't the end of the world and that looking forward, while a bit unknown, is a really GOOD thing for you and your family. so kudos to you! i think you've developed an excellent perspective.
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queenoqueens 3-20-2008 @ 1:48PM
Wow. The last paragraph gave me goosebumps.
Even though I don't have experience with the issues you describe, you paint such a vivid picture with your words, that I feel I might have some understanding.
Thank you for the post.
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Jill 3-20-2008 @ 2:33PM
I always look forward to reading your posts. You're wonderful with words, and with your kids.
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colamum 3-20-2008 @ 2:53PM
Jennifer,
I cannot thank you enough for the posts like this one. My 21 month old daughter currently works with an Early interventionist, PT and ST for developmental delays, that she has yet to be diagnosed for. I usually take it pretty well despite always having someone come in and work with her because it improves her condition.
However, having no one to really talk to about it since it is very uncommon in our area, can be very isolating. So thank you for sharing your stories with the public, i know they have helped me get out of some funks i've been in from feeling isolated.
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jennifergrafgroneberg 3-20-2008 @ 4:11PM
Gosh I want to hug EACH and EVERY ONE of you! My kids all have spring fever and the day already feels loooong and coming here to read all your comments and support, well I can't thank you enough, but I'll try anyway: Thank you!
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kyra 3-21-2008 @ 2:50PM
i love your thoughtfulness and your vivid observations of your world and how you connect them to the things that go on in all of our worlds.
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vickiforman 3-30-2008 @ 3:29PM
I think the thing about grief is that it lets you go when it's time. None of us can know or predict how long it will take, or what the release will feel like, but thank you for reminding us that human nature saves its souls, and grief does let go.
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jennifergrafgroneberg 3-30-2008 @ 4:08PM
Oh Vicky, your writing about grief is some of the finest I've read. I'm so happy your book will be published next year, and that your words will reach so many others, too.
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maggie 4-01-2008 @ 3:03PM
hi again, Jennifer! I am so late with this comment...but I soooo agree with the other comments on here, that one of the best things about you and your writing is your thoughtfulness. It's so true. It's just one of the many reasons I/we miss your considerable presence in the writers' group! (can you hear me whining from way over there? LOL...)
Your solid thought process and your wonderful touch with creative non-fiction add up to one heck of a great blog here. I will try to get over my techno-peasant tendencies and get into the routine of reading blogs, especially yours!
much love from
Maggie
p.s. once more, a huge, heartfelt congratulations as your new book makes its appearance today! wooohooooo, Jennifer, you go, girl!
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