Monday, October 20, 2008


This week Lilly and I attended two new events.

The first was a mom's group at church, during which kids between the ages of 1 through 4 beat each other up, picked on each other, and just plain acted bratty, while the moms sat back and drank coffee, or tended to their younger babies. It was actually really chaotic and stressful for me, the only mom who was paying any attention to my own child. I watched as multiple kids literally pulled and dragged Lilly off of toys that they wanted, snatched toys out of her hands, and yelled at her. Meanwhile, Lilly seemed to be the only child that truly understood the words: "Your turn/his turn" and "Share." She politely waited until a child was done with the tricycle/toy car/random orange cone before going over to it herself, for "her turn" and then a random child who had no interest in the item would see her with it, get completely jealous, and try to harm her into giving it up. So as I was the only parent with any view of the children, I would intervene on her behalf, and initially try to explain to the youngster that it was Lilly's turn, and their turn would be in 1 minute. And then, after being frustrated that they weren't allowed to claw my child into submission, and disappointed that they couldn't immediately have their toy of choice, would start to cry at the top of their lungs. And as the only mom nearby, I would myself feel a little bullied, as I could picture these moms running over to see me with Lilly on the toy, and their child crying nearby - so instead I gave in to the 2 or 3 year old's pressure and got Lilly off the toy in question, and started her on another toy. At which point another Random Child would run over and try to take it by force. What a world out there! Not trying to complain about other people's kids, but it just seems like this particular group could use a few lessons in sharing/manners.

The next day, Lilly started in a music therapy group class. In this particular session, there was a 2 year old and a 3 year old, and I'm not sure what their particular special needs were, except one shrieked most of the time, and the other was, according to his mom, a "hair puller." Which actually didn't need to be said, because as soon as he saw Lulu's long luscious locks, he started pulling. I ended up pulling her hair into a french twist (which is an amazing look on her, by the way), so he forgot about her most of the rest of the class, except for the couple times he clawed her nose. Nice. Lilly, meanwhile, danced, sang, played every instrument, and instigated new hand motions/signs and created new games during the session. At times I felt like she could have been teaching the class.

Anyways, my two overwhelming feelings after both events are that I am kind of burnt out on other people's kids (I'm allowed to feel that way sometimes right?) and on the other hand, I am so glad that I get to take my particular kid home. She, in her *unbiased parent's opinion* (j/k), is the best in any situation.

Friday, October 17, 2008

Today's Inspiration

I read this a year ago in Baby Talk magazine (and have since read her book, Road Map to Holland), but I still often think of and relate to the author's sentiments in her essay, below. Enjoy reading something inspirational from a real writer for a change!

A New Song Parenting my son with Down syndrome isn't a trial; it's a joy

By Jennifer Graf Gronenberg

I once read that coyotes howl and yelp to keep in touch with each other, and that their songs are a celebration. I am always surprised when I hear them, songs that are beautiful and chilling and sad and exhilarating all at once. The sound resonates deep within me. The longing, and belonging. Coyote songs remind me of listening to opera — I don't understand it, but I do.

At the end of each summer, my friend Sarah throws a deck party. She invites women from all over the valley; some faces I recognize, others I don't. Early in the night, I find myself speaking with a woman I know only a little bit. She asks what I have been up to, and I tell her about Avery. As soon as I reach the part about Down syndrome — the genetic condition that affects cognitive development and can cause other health issues — she gets what I've come to think of as That Look. It's as if she slipped on a Halloween mask, behind which she retreats as she tries to think of something to say. The woman I was speaking with is gone, and in her place is the yellow smiley-face icon. I instantly feel bad for her. I see that she's struggling. I intervene. "It's okay," I say.

"You must worry," she says, after a moment. "I mean, every parent worries. You must worry."

Her comment is a new one, an observation I had not heard before. Usually it's "I'm sorry" or "You're so brave" or "I couldn't do what you do" or my least favorite, "God only gives those children to people who can handle them." I dislike these remarks for reasons that are obvious to me — I am not sorry, I am not brave, and I don't do anything that any other parent wouldn't do. The last one, in particular, implies that my son is some sort of punishment, or a trial. I don't think of Avery as either.

But tonight, with the summer breeze floating gently across the lake, in the safety of Sarah's warm and friendly home, surrounded by many of my closest friends, I want to give this woman a real answer to her question, not a platitude or a cliché. I think for a moment, and what I feel surprises me. No. I am not worried about Avery.

I worry about my eldest son, Carter — he is gentle and sensitive, which are qualities that I respect but that cause me motherly concern. Sometimes I wish I
could teach him to protect himself more, to take his heart from his sleeve and wear it inside, safely shielded by his rib cage. My youngest boy, Bennett, is fierce, and while I admire his daring, it also gives me pause — how will we make it through the teenage years? But Avery? I worry the least about Avery.

One evening, I am reading a book on the couch. Carter wants me to get him a glass of milk, which he can do himself, but he wants me to do it, to stop reading and pay attention to him. I mumble something about "in a minute," vaguely aware that I am raising children who are jealous of their mama's time with books. But I also believe they'd be envious of anything I did that didn't include them, even if it was mopping the kitchen floor, and at least this way, there is a chance that my love of books will be passed on through osmosis. So I continue to read.

Bennett is next, also wanting milk, a copycat of his older brother. In fact, I suspect there might be collusion involved with this second request. "One moment," I say, holding up my index finger, still reading. I am aware that Avery has pulled up next to me. He sits beside me. I am still reading. He sits quietly. I am transfixed, carried away from my life by the sentences of another woman, in another place, at another time.

Carter and Bennett have moved on and forgotten about me, about the milk. Avery strokes my hair. He is there. Avery is still beside me. He is wiggling, or something. I am busy. He is wiggling again. I turn the page. He reaches up, places each of his two small hands on my face and gently turns it from the page toward him, so that we are eye to eye. Then he signs "Milk." He wants milk, too. Where the other boys have given up, Avery has stuck with it. In his single-mindedness, in his desire, in his knowledge of his desire, he has persevered. In his own way. In his own time. Which, as it turns out, is the right time. Time enough for me to lift my head out of my book and give my attention to my children, who, after all, have been very patient. Especially Avery. This is why I do not worry about him. Avery will find his way.

Imagine this: I am at a party having a conversation with a woman I barely know. I mention that I have a child, just a normal child. Would she pull out the smiley-face mask of empathy and pity and confusion? I don't think she would. I think she'd tell me about her children, or if she were childless, about her nieces and nephews. Why is there a difference? Is it so hard to think of Avery as a child, first? Is it impossible to think that in addition to bringing us challenges, he also might bring us joy? Is it so difficult to imagine a life with Avery, who is the first person I know who truly marches to the beat of his own drum? Sometimes I think Avery will find a way for all of us.

So I worry about a lot of things, but not Avery. I try to explain this realization to the woman, but the point is lost. Her genuine curiosity is gone and I am talking to the smiley-face again. It is a party, after all. The sun is warm and glowing and the stars are just beginning to come out.

Sarah has lit a dozen white votives in glass jelly jars, and I place them along the railing of the porch. The night is filled with the sound of women's voices, and laughter and music. In the midst of these women, I think of the coyotes. Calling to each other. Finding each other. Belonging. My song is the same as the other women's, mostly. But toward the end, there is a new part. It is a refrain in the key of Avery. I am not sorry. I am not afraid. I like it. It is strange and beautiful all at once, and if you let yourself listen, you might not think you understand it, but you will.

Jennifer Graf Groneberg lives with her family in Montana. Her book, Road Map to Holland, about parenting Avery, will be published in 2008.

Babytalk, September 2007

Dream Bigger

When Jon & I got married, I always pictured having a little girl. I thought she'd look just like me, and that she would be sweet with a little spice. I wondered if she'd be on math team like me, or in marching band like Jon. I wondered if she'd be "cool," if she'd be "smart"; I wondered what she would accomplish. I didn't picture her in the "in" crowd, but she wasn't an outcast either - she would have a small group of solid friends. I hoped she'd grow up to be a decent adult, who would steer clear from drugs and alcohol problems, who wouldn't be too boy crazy, and who would have a strong sense of self. Yet I kind of pictured her being a little insecure.

When we found out during pregnancy that there was a good chance that our little girl would have Down syndrome, I thought it best to throw all my expectations, hopes, worries, and dreams, out the window. I found myself completely in love with the baby growing inside me; but I let myself believe that we were no longer going to experience the typical things with this kid. It didn't bother me (in fact I think I've loved her more because of it), but I adopted the attitude of "whoever she is, I love her no matter what." Which is a great sentiment, but I think I short changed her a little.

Lucky for me, Lilly was born with great dreams of her own. This kid has ambition. She has charisma. She has style, she is truly confident, she is beautiful inside and out. (She also has somewhat of an ego, but she is the kind of person who makes you feel good about yourself as well, so you don't hate her as much for all her strengths!) She is sure of herself, knows what she wants, and knows how to get what she wants.

A few people recently emailed me the story on cnn about a girl with DS in Texas who recently became homecoming queen at her high school. I recently heard about two other young adults with DS who were voted prom king - this year! Pre-DS, I would never have thought my "typically developing" child would accomplish something like this. She'd be lucky if she were invited to homecoming! (As I found it hard myself to get a date each year!) And in the early months of knowing about DS, I wondered if my child would even attend a typical high school, let alone participate in extra-curricular events. But since getting to know this little princess that sleeps in the room next to mine, I've realized that she is not one to be underestimated. If anyone ever had it in her to accomplish something like this, Miss Lillian Grace Sherman has the poise, confidence, beauty, and charisma to wow an entire school.

Which is not to say that this is the be-all and end-all of life; I feel secure in myself that I wasn't the coolest kid in high school! (Although I feel pretty cool these days in the Facebook world!) And as always, whatever Lilly accomplishes, I love her completely and support her 100%. But the lesson she (and countless other individuals who have an extra chromosome) has taught me, is that the dreams of what she will accomplish are HER dreams. They are not mine. And her dreams, I now realize, are bigger than any I could have ever imagined - no matter what they are!

Friday, October 10, 2008

Messages of the Day

I just wanted to relay these messages, from my new role model, who created Signing Time. Well said, Rachel Coleman:

The message to children: “You are perfect, exactly how you are!”
The message to their parents: “You are not alone.”
The message to professionals: “Do not limit us with labels.”
The message to the world: “Communication does not delay communication.”


Lilly loves bikes.

Her obsession started when she was just over a year old. She got her tonsils out, and was in such pain that only Elmo Riding a Tricycle (a little song/skit on Sesame Street) would encourage her to eat or drink in the recovery. When she was 15 months old, we discovered she has asthma and needed to start a twice daily nebulizer, which she would sit through only if she watched the same Elmo tricycle episode. Whenever she was sad, we'd sing that song to her about Elmo riding the tricycle, and we inherited a tricycle of her own from her cousins Lyndsey and Julianne. For months, her favorite thing to do was to be pushed around our neighborhood in Charlottesville on that tricycle. She was even seen around the halls of work on it. Favorite thing ever.

So it was no surprise when she learned how to sign "bike" and she loved pointing out bikes and tricycles whenever she saw them. What an exciting thing!

When we moved to NZ, we bought two bikes from our friends who lived here before us, and couldn't wait to get a kids seat put on the back for Lilly. First we had to get through the first 3 months of rain, before it was even bike-riding weather. Then we spent the next month getting the tires put on, then getting someone else to put the tires on *correctly*, then finding a helmet for Lilly's little head, and finally getting a kids seat installed. For the past few weeks we've been showing Lilly the bikes and talking to her about how we're going to ride the bikes, and she was so excited. A little weary of the helmet we showed her, but excited nonetheless.

Jon finally picked up the bikes last night, and our plans were to finally take out Lilly this weekend on the bike. Today when I picked her up from school, I told her "Lilly we're go ride the bikes today!" And she seemed excited, and we got home and I told her "Daddy's coming home in 5 minutes, we're going to ride the bikes together!" And she scampered towards the door, signing "daddy" and saying "bike."

Jon arrived home, and we started taking the bikes out, and our helmets, and showed Lilly everything, and she looked blankly at us. I said "Lilly do you want to ride the bike with mommy?" She shook her head. She said "No. No." So I said, "Lilly watch mommy ride the bike," thinking maybe she just didn't understand what we were actually going to do, since she'd never seen her own mom or dad ride a bike. So, with Jon holding Lilly, I hopped on my bike and rode around the driveway... while Lilly proceeded to burst into tears. No idea what got her so upset, was it the fact that I got on without her, or the fact that I was riding a bike in general? So then we switched and I held Lilly while Jon rode the bike, to show her it wasn't so bad. And by this time, she was hysterical. It was awful. She'd never seen something as horrible as A Parent Riding A Bike.

Not ones to give up, we decided to show her how the kids seat works by having her doggy sit in the kids seat (wearing the helmet of course), while Jon rode around the driveway once again. It made her cry even harder. Then we tried her baby doll. Nothing worked, she was just getting more and more upset.

At one point she stopped crying and let us sit her in the seat, but a half second later she was bawling again and back in my arms. And for the next 10 minutes, each time she looked at the bike, or the helmet, she'd burst into tears again. She did NOT want to ride on a bike with us, and she did NOT want us to ride on one near her. So we decided to put the bikes away - which made her cry even harder, I guess, that we were still touching the bikes.


Lilly hates bikes.

Wednesday, October 1, 2008

The Best Thing About My Day

(May 2008)

When I dropped Lilly off at school today, another mom had just arrived to drop off her kid as well. I didn't know the mom, and had never really seen her son interact with Lilly. Anyways, the mom said to me: "I just wanted to tell you, I asked Harry what the best part of his day was yesterday, and he said 'Playing with Lilly.'" I have to say, my heart just kind of melted right then and there. I mean, of course it's the best part of my day, but for Random Kid to feel the same way? And then her teacher said "Yeah, Lilly's the most popular kid. Everybody loves her." How cool is that?!

And as I'm lying here in bed, an insomniac (it's 2 am NZ time), thinking about how wonderful my little girl is, and what a proud moment that was, I can't help but let my thoughts wander. What if someone had told me that when I was pregnant?

Unfortunately, my pregnancy experience was different, at least in a medical perspective. When we walked in for our 3 month ultrasound, super excited to hear the heartbeat for the first time and maybe get a good look at this little chicken we were cooking, we had no idea the appointment would end with being told that there was a one in less than 5 chance that our daughter would have Down syndrome. Which was said with such disappointment from the doctor "I'm sorry to have to tell you this... There's a problem... You have options..." Why was it given as such a negative? With that attitude, I can almost see why the current statistic is 92% of couples who find out about their child's diagnosis of DS aborting. In fact, it quite honestly pisses me off (for lack of better words) that DS is something that is checked so cavalierly and casually during pregnancy, without thinking of the ramifications. Can you imagine if we had been swept up in what "most couples do"? If we had gone through with the amnio, with the risk of miscarriage, and then decided, before even meeting our angel, whether or not she was worthy of life? I can't even fathom it.

I know it's a subject that many people have differing opinions on, so I'm not necessarily trying to ruffle feathers, but all I can say is that my daughter is amazing. She is the complete opposite to the outdated negative stereotypes: she is bright, funny, adorable, beautiful, and popular! She is the best part of Harry's day. And mine! And she's not the exception to the rule when it comes to kids with DS today. I am so impressed with all the kids we meet with DS, and it's not unheard of to hear about adults with DS going to college, getting married, and being voted prom king or queen.

After that first ultrasound appointment, which was 3 days before Christmas, Jon and I declared that we felt like Christmas had been taken away from us. That the joy of the pregnancy was over - because from the medical perspective, it seemed like our little fetus was a disappointment. Luckily we kept the faith that our daughter would be a miracle no matter what; but the real amazement was when Lilly was just 3 weeks old, and Jon picked her up from the bassinet next to our bed in the morning. He said "Waking up to Lilly is like waking up to Christmas every day." And he meant it, and we still do feel that way. And it's so ironic that the actuality of our daughter is so different than the negative impressions that were presented "way back when."

I think of all that she is exposed to - a typical preschool experience, loving parents, lots of traveling, widespread acceptance, and more stimulation than a child needs! And I think of the kids that were born 50 years ago, who were locked in dismal institutions without love and attention, and no wonder the reputation was developed about kids with DS. Because no child would thrive like that. And I think of all the kids who don't get the opportunities to even exist because of the first impressions that a random ultrasound technician or obstetrician gives to a newly pregnant couple.

And I am so grateful, so, so grateful, that things turned out the way they did with our little Lulu. She is the best thing that has ever happened to us. And the best thing about Harry's day.