A Little More: What not to say
Categories: Just for moms, Just for dads, Special needs
Nearly 5 years ago, I found myself at a wedding in a city far from my home, away from my 3-month-old twins who'd been born prematurely, and had recently been released from the NICU.
The fact that I would leave my family at such a time to travel to this wedding says a lot about the couple being married that day: I'd known the bride since girlhood and felt as close to her as if she were a sister.
Being mom to 3 children was still new to me, then; people would ask if I had kids and I'd answer, "Yes, a 4-year-old," and then hastily add, "And twins! The babies are 3 months."
Only sometimes did I say that my son Avery had Down syndrome. I didn't have the words figured out, yet. I didn't know how to manage my reactions as well as the reactions of others. Even the terms were problematic: sometimes I'd say "Down syndrome," sometimes I preferred "Trisomy 21," which sounded (to me) more scientific and was less likely to elicit stereotypes.
Too, I sometimes said too much. I'd go into great detail about all of it--my water breaking at dawn (what a lovely image!) and the premature delivery and Avery's diagnosis, on and on, until I was exhausted and so was my poor conversation partner, whom I'm sure was regretting the one simple question that unlocked Pandora's box.
Which is to say, I was a bit shaky, at first, being mom of a child with special needs. I wasn't one of the women who felt chosen. I wasn't one of the moms who immediately rolled up her sleeves and got going. I wasn't even particularly good at explaining Down syndrome--I knew it had something to do with genes, but I wasn't really sure what genes were.
At the wedding, my attempts at finding a good way to speak about my life and my new family were equally unsteady. I was surrounded by many old friends, and not telling them felt like a betrayal to my son. But telling them in a lighthearted way, in a "this really doesn't' matter" way, felt untrue, too.
So I did my best, like a pendulum swinging again and again through the center, but never quite managing to rest there.
After the ceremony, we were walking down a busy street, a parade of us from the wedding. I was next to another woman I'd known since we were girls. As we were talking about how beautiful our friend, the bride, looked, and how handsome her groom was, it occurred to me that this woman should know. Apropos of nothing, I blurted out, "My son Avery has Down syndrome."
This was my worst one yet. My eyes began to water and I thought to myself, Get a grip! You can't spring it on people, like that!
My friend stopped walking. She turned to me, took my by the arm, and held it. Her eyes had tears in them, too, and she said in a rush, "I've wasted my life."
We stayed like this for a moment, both of us watery-eyed and emotional. And then we did what anyone might do in such a situation--we started walking again, a little unsteady, leaning on each other for support, hurrying to catch up with the crowd.
It was a beginning, for me. A glimpse through my own confusion; a light at the end of the tunnel. In that moment, I had the realization that it was not all about me: that my son's diagnosis, or my feelings about it, were not the only things around me.
That even as I felt locked in my own personal drama, there was a whole world spinning, full of people who sometimes felt scared, and sad, and bewildered, just like I did. Finding the perfect words wasn't as important as I might have thought, afterall: what mattered most was when we reached out to each other, and tried to share them.
Next week will be my last "A Little More" column for ParentDish. If you have anything you'd like to ask me about, or anything you'd like to say, please feel free. I'll do my best to answer any of your questions in my final post, and as always, thank you for reading.
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Reader Comments (Page 1 of 1)
kristen 8-21-2008 @ 8:18AM
Jennifer, beautiful, as always. I will be sad to see you go. Time for new adventures?
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Rebecca 8-21-2008 @ 8:19AM
I too recall those days when E was fresh and new and I blurted out too much as tears gathered in my eyes.
You certainly caught me off guard with the notice you won't be posting here anymore. I'm sure that you will be greatly missed by all. I hope that this doesn't mean that you won't be blogging either.
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cml3720 8-21-2008 @ 8:23AM
I will miss your columns. Although they often bring a tear (or several) to my eye, they have helped me to see how rewarding life can be with a special needs child. Thanks so much for sharing with us. You will be missed.
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Kirstie 8-21-2008 @ 9:27AM
Another absolutely beautiful piece. You'll be so sorely missed from PD, Jennifer - your entries are one of the reasons I still hang around here, and consistantly remind me of why I want to work with special needs children. We'll all miss you, and miss Avery, Bennett, and Carter as well - they always lit up my day. =]
Good luck in everything you do, and best of luck and happiness to your boys.
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Tamyu 8-21-2008 @ 9:28AM
I am so very very sad to see you go.
It`s such a shame...
You were honestly my favorite blogger on here, and the one of the only I felt that I had anything in common with.
Goodbye, and good luck with all.
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Joy 8-21-2008 @ 10:12AM
Oh Jennifer, you also caught me off guard with your last sentence. I loved your book and I love reading about you and yours and will really miss it. Drop me a note, let me know if you’ll be writing somewhere else. My best to you, Tom, Carter, Bennett and Avery in your mountains.
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Sabrina 8-21-2008 @ 10:39AM
I, too, was stunned to read that this is your last column! My son has special needs to and I loved reading about your adventures out into the world. I really connected with a lot of the things you had to say, even though he doesn't have Down Syndrome like Avery. I know what you mean about not knowing how to talk about it, but knowing you should. I know about saying too much, or feeling if you don't take it seriously you feel like you're trivializing something that is a HUGE part of your life and your child's life. I've often struggled with how much is appropriate. I'm going to cry over your column for probably the 90th time now knowing that you're leaving and I won't have someone else thinking/feeling/experienceing the world through the eyes of a special needs mother that I can look up to and virutally commisserate with. Good luck!
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the goddess anna 8-21-2008 @ 11:31AM
I'm not sure if I've ever commented, but I've read every post of yours. I too have twins, with an older child (daughter). While one of my twins does not have Down syndrome, neither are at the level where they should be at three (barely talking), and the younger one might have neurological problems. I don't talk about that much, I'd rather stick to my denial that everything is okay with my boys, but it feels nice to say it to someone else.
I've never met you, but I am going to miss you like a dear friend. We are mothers of three children, of twins, of special children. Keep strong.
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Kleidy 8-21-2008 @ 12:08PM
The only reason why I ever came to parent dish was because of you.
I didn't write a comment before (sorry about that!) but ALWAYS read your posts here.
Jennifer you are such an amazing and talented writer, I love your book and always read you Pinwheels blog, parent dish will not be the same without you, I actually have no reason to come back here now.
Please let me know if you’ll be writing somewhere else.You will be missed!. Wishing you and your family all the best~
Kleidy
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Jennifer 8-21-2008 @ 1:02PM
Jennifer,
I recently discovered your column here; two months ago an amnio confirmed that our second child, a daughter due in December, has Down syndrome. I have found much comfot in your writing - you write so beautifully, too - and I am planning to get your book, but I will miss your columns here. Would love to know where else I can read your blogs. We, too, live in the western mountains and I enjoy how you infuse nature into your writing. Best wishes to you and yours, Jen
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queenoqueens 8-21-2008 @ 2:09PM
Very, very sad to see you go.
Why is everyone leaving ParentDish all at once?
I have not personally known any children with Down Syndrome and I was learning so much through you. I hope you let us know where you will be writing, or that I can at least find you with a Google search.
Thanks for all the eye-opening posts, always so beautifully written. And thanks for helping us to see and appreciate the world around us (and within us).
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Jordan 8-21-2008 @ 8:19PM
This is beautiful, as always. I'm sorry you won't be writing here, but trust that you will continue writing....
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Niksmom 8-21-2008 @ 10:52PM
"...what mattered most was when we reached out to each other..."
Exactly. The words, the places we write them; none of it is as important as *that* we reach out.
I am so grateful for the many ways in which you have (and do) reach out; your columns will be missed but I know where to find you, my friend. Let us continue to reach out to one another.
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jennifergrafgroneberg 8-22-2008 @ 1:15PM
My dear, lovely friends:
Readers like you are what make writing about my life and my family so very, very rewarding to me. Thank you a thousand times for sharing your encouragement, your support, and your own stories.
Next week is my last column simply because it's time for a break, for me...I'll write "a little more" about it one last time!
xo
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grace runner 8-23-2008 @ 11:00PM
Dear Jen,
Weekly, you took us into your world and allowed us to walk with you through words. I've seen your children, the ancient log house, your mountain ranch, your kind way of parenting and your amazing wisdom in every post. I will miss these weekly glimpses of your life and hold onto your bits of kindness and wisdom like jewels. Thank you for all you have given and shared.
Grace
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sprhyneer 8-24-2008 @ 11:48AM
Jennifer, Say it isn't SO!?! I will so miss your weekly column -- I'm bummed to say the least :( However, I appreciate and respect your need for a break, and I will continue to check in on you on your blog.
I too teared up reading this entry since I had a couple of those awkward moments with friends, not really knowing when, what or how to give them the news of Lucas' diagnosis. There is so much learning and growing by walking in these shoes of ours...a life less ordinary, but much more extraordinary as a result.
I miss you already!
xo
Sandy, one of your adoring fans :)
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tekeal riley 8-27-2008 @ 7:33AM
i, too, am sad to know you'll be elsewhere- that i won't be able to dip in and be nourished from your words in this way. take care.
i've recently thought of you and reflected on the fact that i haven't read your book yet...and now reading this post, i feel a light starting to dawn inside. one which simply emanates gratitude and relief for when i can allow space around the little voices inside that i haven't wanted to make much space for.
the connection is this: i was one of those mamas that "rolled up her sleeves and got going" once we learned of livia having down syndrome. AND, while waiting for the definitive results of the blood tests, i said to close friends that i hoped they were wrong, and that it wouldn't be the final diagnosis... and after we knew for sure, i burst out crying at one point, asking livia's father if he was angry at me- feeling somehow possibly responsible because of being in my mid 30's, responsible for something less-than... and these are, in retrospect, my weaker, afraid, uninformed, very human moments about which i feel both shame and compassion.
your writing connects me to the place of giving permission for all of my experiences, and, knowing that i'm not alone in them. maybe it's time to order your book...
thank you,
tekeal
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Tina 8-28-2008 @ 3:05PM
Jennifer-
I have 2 boys, one who has Cerebral Palsy. He is now 9 yrs old and doing very well. But he has been through so much in his young life already. I have always tried to have a smile on my face when it would come to medical procedures, but inside would feel like I was dying. Having a child with special needs is the hardest, most exhausting thing in the world. I have had my biggest highs and the lowest lows because of his condition. I sometimes forget that HE is the one with the condition, and will have to live with it for the rest of his life. I have finally learned to live one day at a time, and try not to worry too much about the future. He has taught me that among a million other things. It is amazing what something that a first seemed like the most awful thing in the world, actually has slowed me down, and made me appreciate life at a slower pace. Good Luck with your future. By the way I have read your book and loved it, another reminder to myself to appreciate the here and now, and not worry so much about things I have no control over. Life is sweet and getting sweeter.
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mcewen 10-29-2008 @ 10:38PM
I've found that the first few times I had to say it out loud I practically have convulsions from all that pent up emotion. They do say that 'talk therapy' is the best, and certainly the need to verbalize it publicly can be a huge hurdle. Fortunately it gets easier every time.
BEst wishes
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