In my hands I have a stack of forms from the Kennedy Krieger Institute for their study on the incidence of AV canal in babies with Down syndrome. There’s more to the story–it’s over at ParentDish.
I received this from J., who agreed to allow me to reprint part of her letter, here:
From time to time when people tell me what they think it must be like to raise a little guy like (my son), I tell them very honestly that 99% of the time, it is an amazing gift to be able to be his mommy. He is so much fun and full of life! He has huge smiles and shares them with everyone. He has taken us an incredible journey that we never even planned and has totally given me a new and beautiful way to see life.
Then, there is that last 1% – the feelings that I keep buried and hold secret, sometimes even from myself. That 1% is like the sun. It hurts too much to look too closely at it, and I know that if I look at it too long, it could blind me in the amazing way that I now view life.
But that mere 1% is also surprisingly powerful, and still lies just below the surface – even after 6 years now. If I try to ignore it or deny that it there, it will spill over when I least expect it, so I have to respect it as well.
That 1% is the overwhelming grief at the reality that can’t be changed – the fact that my little boy is still damaged and always will be. It is the grief that comes with the specialists who take off the gloves and “tell it as they see it” with brutal honesty. It is the tears that totally catch me off guard when they suddenly fall for no particular reason at some random song, and the rare wish that I could wake up and find that this was all just a dream and my little boy has no more disabilities.
The 1% is the guilt that is buried deep … although I know beyond a doubt intellectually that it isn’t true, there is still that overwhelming emotional response of Guilt that tells me that somehow this is my fault. The 1% is the anger that rages very rarely but with enormous power at the parents who say cruel things without even knowing it … or at the adults who do nothing as their kids tease or ignore my son. The 1% is the cynicism that cries out below the surface at the people who tell me with big smiles that he is “doing great!” … And, more than really anything else, that 1% is fear.
Fear for my son’s future and wondering what kind of a life he will have without the ability to support himself. Fear that he will someday realize that something is wrong with him. Fear about the possibility that his failure to understand danger and “sensory seeking” behavior (i.e. intentionally falling down stairs) can cause serious injury or death. And, of course, his seizures.
This book [Road Map to Holland] is the voice of the 1%. … [Jennifer’s] narrative of hearing the news of her son’s Down syndrome reminds me of my reaction when I got that phone call telling me that my son’s EEG revealed “pronounced epileptic activity,” followed by my reaction of “what does that mean?”
I clearly remember the moment the call came in: the food cooking on the stove, the kids yelling in the background, watching the clock so I could get the girls to their performance on time. Then, I answered the phone. It seemed as thought time just stopped and the energy of that moment and of life as we knew it seemed to fall silent as the news was delivered … I remember wanting to run away from it, but knowing that I had to face it instead. And I remember that, despite the real weakness I felt at that moment in my knees, I couldn’t give into that feeling of wanting to crumble, because the kids were still right there, dinner was still cooking and we still had places to go, things to do and a life to live.
Nonetheless, his seizures still bring guilt and fear, even today. I keep that 1% in control when events from everyday life hit close to home. Last year, a little boy from (my son’s) same classroom at his school died in the middle of the night from a seizure. People still talk about it regularly. (My son) was often compared to him, and though I never met his mom, I am told by several that she is a lot like me; friendly, positive and very upbeat. When it hits that close to home, I can’t help but think, “What if it happens to us next?”
But luckily, that 99% that I described earlier quickly takes over, and I realize that (my son) was our surprise gift from God, unplanned but given to us nonetheless – that this journey, and every day we spend with my son, is His awesome gift to us. Life is much more vivid and vibrant because of this amazing ride that we have been invited to take – and I realize that the 1% only serves to make life that much more rich. I feel honored and very, very blessed to have been given this special little boy.
If you’d like to honor Evan Kamida’s life, but can’t be at the memorial in person, you can do what I’m doing: I’m going to put flowers near a swingset here in Montana, take a picture, and post it with links, so Vicki and her family will know I’ve been thinking of them.
Can you imagine it? Flowers at swingsets and playgrounds all across the country–flowers for a little boy who loved to swing, and for the mama standing behind him. I hope you’ll join me, and help spread the word.
Thanks to Shannon for the brilliant idea!
Here’s the first that I know about (thank you, Christa):
and this Flickr pool of images
There was a woman in the audience for Saturday’s NDSC workshop: I can see her clearly, she was sitting near the aisle toward the middle. She had dark, shoulder-length hair and in a nearby stroller was her baby. Before the presentation began, she mentioned she’d read Gifts, and was reading Road Map, and that the books had changed her life.
Later, we learned more about the baby, a little girl named Grace…who you can read about here.
I’m thinking about Grace’s mother today, and my friend Vicki. And I’m thinking about the power of words: what an awesome responsibility comes with it. Would I tell this new mother her choice was the right one, even as I mourn with my friend?
I would. I would tell her that love is the thing that wakes me up in the morning; love is what that pulls me down the stairs into the kitchen to spread the peanut butter on the toast and pour the juice into glasses. Love is what compels me to move through the moments of my day; sometimes, love is the only thing that makes sense.
Even when sadness overwhelms me, I can see love at the other side of it; it’s the reason life hurts. Because I love it so well.
This Lovely Life is the title of Vicki’s forthcoming book. I know she’d tell you the same thing.
I love you, Vicki, and I love Evan. And I always will.
Here is the information on the services for Evan:
Public viewing: Monday, July 28th 5 -7 pm
Memorial: Tuesday, July 29th 11 am
Cabot & Sons Mortuary
27 Chestnut St
Pasadena, CA 91103
In lieu of flowers, please send contributions to:
The Pediatric Epilepsy Fund at UCLA
Division of Pediatric Neurology
Mattel Children’s Hospital at UCLA
David Geffen School of Medicine at UCLA
10833 Le Conte Avenue
Los Angeles, CA 90095-1752
Please help spread the word.
Evan Kamida, July 30, 2000 – July 24, 2008
Friends, my name is Lee Goldstein, and I am posting this entry for the Kamida family. Evan suddenly and unexpectedly passed away this week. Feel free to contact me at my email: leegoldstein (@) yahoo.com. Information about Evan’s memorial service in L.A. will be posted next week.
Evan is the son of Vicki Forman and Cliff Kamida. Go here to send your love.
The day dawned bright and early and Kathy and I worked more on our presentation, before attending a workshop by Susan Levine and Brian Skotko on sibling relationships. The talk was based on information they’ve gathered hosting workshops for kids–what kids wished their parents knew about them and their brothers and sisters.
The list includes (as best as I can remember): all sibling relationships are comprised of intense, shifting emotions, and siblings with special needs are no different; children know when something is wrong, and it’s best to address and discuss any concerns in an age-appropriate manner; when you’re unsure of what your child is trying to express, ask more questions, try to establish the context, but don’t jump to conclusions. Most often, children do not bring prejudice or loaded connotations to terms like Down syndrome–they are just curious. Our kids want us to take care of ourselves; they want us to know that it’s okay for us to do that.
Dr. Skotko also shared his own personal experiences within his family (he’s very funny!) and revealed, in part, the findings of some of the research on having a child with special needs in the family–which show that siblings are positively affected by the experience (they exhibit a higher level of maturity, a greater degree of empathy, and are more likely to enter the helping professions, like healthcare or social work or teaching, than similar-sex, similar-aged peers). All this information and more will be available in an as-yet untitled book about siblings by Skotko and Levine, to be released by Woodbine House next year.
In the afternoon, Kathy and I gave our presentation, “New Parent’s Survival Guide.” The first half was a look at the baby–baby care, possible medical issues, Early Intervention, and a Parent’s Bill of Rights, which includes the right to prompt and professional treatment, the right to have all procedures and therapies explained in a way that you understand, the right to consider and weigh all options including the option of saying “No” or “Not at this time,” the right to fill your child’s life with people who support and encourage and love your family.
The second part focused on the family: the mother, and possible reactions to her newborn; the mother and father together and individually; the siblings; and extended friends and family. We closed the session with a plea for outreach and building community, and as an example, I read a short passage from my essay in Gifts, which speaks to the value of choosing our words with care.
Again, the session ran over. Too much to say, not enough time. As part of our contribution, Kathy and I had copies of both Road Map and Gifts to give out to any parent who wanted them. After our session we moved the books to the Exhibit area, and continued to pass them out there–Rebecca and Amy and Renee were fantastic, and it was one of the most fun moments of the conference for me–being able to share these resources with new parents, and doing it with my friends.
That evening was the Awards Banquet, and Kathy and I sat at the head table. The NDSC gave Road Map an award for Excellence in National Media, and I realized I was going to need to give a little speech, which I had not prepared. When the time came, I managed to get myself out of my chair, walk across the little runway, and down the three steps, all without tripping. I managed to keep myself together as I was introduced; I even made it to the podium okay. But then, I got very nervous. When this has happened to me in the past, I look out into the crowd and find a friendly face and speak directly to that person. But when I looked out into the crowd this time, all I could see was the shining glare of the spotlight, and then blackness.
I forged ahead: trying to say something about my indebtedness to Emily Perl Kingsley and all the parents who’d come before us–without them, there would be no NDSC or no books or no awards banquets. I wanted to say that after everything EPK had given me personally, all the support and the encouragement and the help with my manuscript, the only thing she asked in return was that I write a thank-you note to Sesame Street (which I of course did.) It was meant to be funny, but it all came out in a rush and I got about half of it said. (Note to self: no more extemporaneous speeches). I made it off the stage, then nearly tripped on the last step. I twirled around and had my photo taken and then went back to my seat at the table. When the ceremony was over, that friendly face I’d been seeking out appeared behind my seat. It was Michelle, who somehow knew I needed a hug.
The next morning, my flight left very early. I got to the airport, and made my way through security to my gate. All the while, without even knowing it, I was looking. Scanning the crowds, looking for my people, the families and adults and children and babies with Down syndrome. They weren’t there, and I realized I was alone.
It was as if the weekend showed me how the world could be: how inclusion and acceptance might work, if we only gave it a chance. And when it was gone, suddenly, and I was back in the real world, I saw how much I missed it. How empty and hollow and one-dimentional a world of same-ness was. How much work there is to be done, to make sure this doesn’t become our future. I felt it so strongly that I locked myself in a stall in the ladies room and cried.
It isn’t the first time being Avery’s mom has caused me to cry; I’m sure it won’t be the last. But I don’t want to end this post on a note of sadness, because that’s not really how it felt. The whole weekend felt like a priviledge–that I had been able to peek into a life that’s waiting for us, ahead. If I feel any sadness at all, it’s the urgency to close the gap. To make our world more like the place I visited that wonderful weekend in Boston.
My plane arrived late Thursday night, after delays due to bad weather. The airport was nearly deserted, and as I was walking toward baggage claim and the area for ground transportation, I passed a woman from a car service holding a sign that read, “GRAF.” Confused, for a moment I thought the sign was meant for me and a little thrill went up my spine. A car service, waiting for me! This is the life, I thought.
Of course, had I kept my wits about me, I would have remembered that my name is “GRONEBERG.” The car didn’t belong to me, but to Robert Graf. Hi Robert!
I took a yellow cab which drove beneath a great, long tunnel and when it emerged, there was the city of Boston, bright and clear. The night air was soft and smelled like the ocean. The cab driver deposited me safely in front of the Renaissance Hotel. My room was on the 18th floor and from it, you could see the city and boats in the harbor and farther out, the blinking lights of the airport.
I shared the room with Kathy Soper, who arrived even later than I did. We stayed up talking about everything you might imagine: first, travel plans and flights and delays; then the conference and our presentation; then kids and families; finally, religion and philosophy and life.
Friday was my first work-day. I hosted a Sharing Session for Mothers Only, Birth-Age 2. Right before the session, I met Rebecca and Miss E and Amy Flege and Miss Mayson for the first time (in person)–both ladies are kinder and sweeter and funnier in real life than I realized, and their children are so beautiful and amazing.
In the beginning, there were just a few moms at my session, so I didn’t use the microphone or the dry erase board, which might have been a mistake. One by one, moms arrived, some with their babies in tow. Within the first half hour, the seats were filled, and moms began sitting on the floor.
The chairs were arranged in a circle and we went around the room, introducing ourselves by first name, ages of our children, and what we’d like to talk about that afternoon. As the women spoke, it became clear that there were three main things on their minds: balancing work/home life/therapies/relationships; preparing for an upcoming heart surgery; and making the transition from home to preschools.
We dove into these subjects, and I mostly went from person to person and indicated whose turn it was to speak. Points that were raised for each concern (as best as I can remember them) included:
Balance–these are questions of motherhood, in general, too, and not just related to special needs motherhood. There are no right answers, in terms of amount of therapy or frequency. Each child is unique, and the child’s needs will grow and change over time, too. Therapy isn’t like a bus that you either catch or you miss–you can begin any time, you can change it when you need to, and you might take breaks from it, also, as seems fitting. There was a discussion about the pressures we put upon ourselves, too–and realizing that our children are who they are, and that it’s not up to us to change them, but to provide opportunities to help them reach their potential. This part of the talk seemed difficult for some of the moms to hear; women who believe that their child will be the child to set all the records and beat all the odds, as I once did, too.
The second part of the discussion focused on finding support for a family whose daughter was about to undergo open heart surgery. Names and resources were shared. One mom spoke about her personal experience with a similar surgery, and offered these suggestions: speak up, ask a lot of questions. Don’t be embarrassed to be pushy; the squeaky wheel gets the grease. Stay by your child’s side and room-in whenever possible. Double check everything–you don’t have to be a doctor to be your child’s advocate. You are the expert on your child and if anything at all doesn’t seem right, say so. Trust your instincts.
The final part of the conversation was about making transitions to preschools, which is something I’m not particularly qualified to talk about, since we homeschool. Other mothers spoke to this point, and these tips were offered: stay active and involved in whatever ways you can manage; the expectations you have for your child should be high, and you should hold others to them also; IEPs are not necessarily something to be dreaded, and if done well, they can be an effective tool for communication between all the members of your child’s team. A life book can be made for each child, which is a binder of information including photos, any medical information, an introduction to the child from the family, from the PT and OT and ST, as is appropriate–anything that might better help a teacher or aide come to know your child. The life book follows the child throughout his school years, with teachers and other students adding in pages as the child grows.
Several twin moms were in the room, and the idea of building a support group for twins was raised. The session went over our time limit.
While this was happening, there was a Downsyn.com meet-up, which I was very sad to miss. But I was able to attend the opening keynote address, given by Emily Perl Kingsley, titled, “Still Traveling.” She shared a brief recollection of her early days as Jason’s mom, and of her efforts at Sesame Street. Then she revealed she’s working on a new metaphor for explaining life as the mother of a child with Down syndrome: this one is about a boat. We’re all in this boat, she explained, and it may not be the boat you thought you’d be on (the one with the climbing wall and the margaritas) but it’s a good boat, anyway. It doesn’t matter where you are in the boat–front, back, middle. Just pick up an oar. And if we all pull together, we can go places, too.
Later in the year, she’s the keynote speaker at the Buddy Cruise (on a boat like the ones with climbing walls and margaritas!).
After, I stood in line with the dozens of other people to meet her. She gave me a big hug and it was as if a circled had closed around my life, around her and me. I was able to thank her, for her courage, for her honesty, and for the example of her life. It was one of the best moments I’ve known.
My conferences are over, and I have so many things to share, from each of them. But for now, what’s emerged as an overarching theme is the idea of “sameness.” The motto of the NDSC Conference in Boston was, “We’re More Alike than Different,” and the “Mommyblogging: Writing About our Children with Special Needs” panel at BlogHer was inspired by Vicki Forman’s essay, “The Mother at the Swings,” which seeks out parenting common-ground.
All this had me remembering my first play group with Carter, and then my first special needs play group with Avery and Bennett. I write more about it this week at ParentDish.
This week’s ParentDish post is about all of you–were your ears burning?
On Friday, I’ll be signing books with Vicki Forman from 2-2:30 at the BlogHer Bookstore & Internet Cafe, which is across from Registration in the Westin’s Georgian Room–if you’ll be there too, stop by and say hi!
Then Saturday, I’m part of the afternoon Break-Out Session #2 from 1:45-3 called, “MommyBlogging: Blogging About Our Children with Special Needs.” The whole weekend is filled with sessions that I’d love to attend–and there are at least 3 I’m sad to miss that occur right as we’re giving our presentation. I don’t suppose I can ask everyone to “hold that thought” as I dash about from room to room?
Ah, well. Life is about choices, and I feel very honored to be on a panel with such distinguished bloggers. I’ve just about recovered from my speechless-speech incident in Boston, and by Saturday, I’ll be ready to go.
Susan and Janice of 5 Minutes for Mom have launched several new sister sites, including one called 5 Minutes for Special Needs. Tammy of Praying for Parker is the site’s fearless leader, and regular writers include Kim of Ramblings of the Bearded One, Tom at Narrow Ridge, and many other names you might recognize. I’ll be contiributing a monthly column called “5 Minutes for Special Needs Books” and this month, I looked at More Than A Mom. (Go here for a chance to win a copy of the book.)
from Boston, where this year’s National Down Syndrome Congress Convention was held. There is so much to share: so many memories, like meeting people from the Internet who always felt like old friends, but now they really do, since I can put a name to a face. Holding the most beautiful babies. The way the salty sea air felt soft and smelled so clean; the way the lights of the city twinkled against the glass of the hotel room.
I have 3 favorite moments: meeting Emily Perl Kingsley in person, watching Rebecca and Amy and Renee and everyone hand out free copies of Road Map in the exhibit area (it was so fun, like Christmas in July!) and the awards banquet Saturday night, when Road Map won the 2008 National Media Award-Print. I made some sort of little speech that I’m sure was incoherent, because the whole time I was trying very hard not to cry.
There’s so much I want to remember! But right now I can’t seem to stop kissing my 3 boys, and when they wriggle away from me or “Oh, Mom” me, I am unbelievably content just staring at them, as if I’ve been gone for years.
Today at ParentDish–food for thought. I write about disability, and how we talk about it, and why it makes me uncomfortable.