Awareness

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May is Williams Syndrome Awareness month.

Please read this blog post by Terry Monkaba, Executive Director of the Williams Syndrome Association –> A Special Awareness Campaign. She writes about Jonathan Martinez, a nine year old boy with Williams syndrome who overcame heart surgery but tragically lost his life when a man came into his special education classroom in San Bernardino and began shooting. I know that many people heard about this senseless tragedy in the news, but I don’t know if everyone realizes that Jonathan had Williams syndrome. My heart absolutely breaks for his family.

When I think about awareness, I think about how far my own family has come in terms of recognizing, then accepting, then championing people with Williams syndrome. We were not very well-educated about people with special needs, especially the older generation of my family. However, we’ve come so far over the past couple years while we watch Emmy grow. But there is an element of sadness too. I have lost two of my biggest champions — two people that eagerly awaited my blog posts as if they were hot off the presses. Two people that loved Emmy beyond words.

My grandmother, Simone, died in 2014 from cancer. And this past Mother’s Day, my aunt, Eva, died — also from cancer. These are two people who didn’t know much about special needs before Emmy but, boy, did they embrace her. When Emmy had heart surgery in 2013, my grandmother was in the hospital almost every day of the 30-day stay. My grandmother loved to talk, but she would come and sit quietly by Emmy’s bed — just watching her. She also filled up huge, heavy thermoses of tap water, which she would bring to the hospital every day to keep us hydrated. She dragged the thermoses on the bus as she made the hour-long trek back and forth, and I would tell her that she should leave the heavy thermos at home. They had water in the hospital, and I hated the idea of her carrying heavy things on the bus. But she wanted so badly to do something to help, as we all watched Emmy lie there helplessly in the hospital bed.

When we finally left the hospital, my grandmother was right there alongside us. I remember her saying, “So Emmy doesn’t have Williams syndrome anymore, right??” She thought the heart surgery might have cured her of Williams syndrome. My grandmother was born in another country and spoke with a heavy French accent. She often searched for the English version of a word and, therefore, didn’t fully understand the complexities of Williams syndrome. But she thought Emmy was absolutely amazing. And she loved, loved, loved reading my blog.

My aunt, Eva, had been asking me to write a blog post for the past couple months, but I was so busy with the kids and their schools and activities… I never got around to it.

Sitting by her hospital bed on May 14, the day she died, I told her that I would get back to writing. So here I am…back at it. I know she would have loved to read this. She would have loved to see any picture of Emmy, even if I just wrote “BLAH BLAH BLAH” below it. Like my grandmother, Eva was a big supporter of Williams syndrome. It’s interesting to see how far everyone in my family has come from my initial reveal of, “I have big news. Emmy has something called Williams syndrome…” to understanding more of what it is, seeing Emmy for who she is, and learning more about Williams syndrome every day. I’m so sad that two of my biggest supporters, my grandmother and aunt, won’t get to read this post. I hope they are looking down on us — and Emmy as she grows.

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Tomorrow is the Day

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Thank you, everyone, for your sweet words and wishes. I can’t believe that we’re on the Eve of another potential surgery. I say “potential” because we’re scheduled for a bronchoscopy, which is more of a look-see. But if the doctor sees something minor that he can fix, he’ll do it. The doctor won’t know what he’s dealing with until he performs the procedure, so we’re kind of on pins and needles in that respect.

As such, it’s being treated as a surgery. The document I have in front of me with the details for tomorrow reads across the top: “SURGERY 11/10/15.” The sheet also tells me that Theo can’t eat or drink past midnight. We have to be at the hospital at 8:00 am, and the procedure is scheduled to begin at 9:30 am.

In the photo above, I put that shirt on Theo 5 minutes before I snapped the picture. Can you see how his shirt is covered in drool? Also, you may be able to see the excessive saliva in his mouth. This is more than just teething or other typical baby stuff.

I’m incredibly depressed about the procedure tomorrow, but I’m also thankful that we may finally get to the bottom of this. I’ve been so worried about him. Lately, he’s been waking during the night, coughing on the mucus in his throat.

I’ve been going through the whole “It’s not fair!” cycle, and I’m trying to get out of my own head and just accept it. I stood in front of my bookshelf for a while (I love books and probably have way too many…), trying to find something to read that would pull me out of myself. I found Byron Katie’s Loving What Is and got into bed, prepared to read. What fell out of the book was a printed list of high-risk obstetricians from our insurance company. My husband had written some notes at the top because he was the one who printed the list for me…when I was newly pregnant with Theo. The pregnancy was high-risk because I had a uterus with a “thin window,” as they say, and I needed to be monitored. I guess I turned towards this book when I was worried about my pregnancy.

And now that we made it through that stressful pregnancy, we have a sweet little guy with an adorable laugh. Truly, his laugh is awesome. More of a chuckle, really.

So here’s what Byron Katie says in her book: “If you want reality to be different than it is, you might as well try to teach a cat to bark. You can try and try, and in the end the cat will look up at you and say, ‘Meow.’ Wanting reality to be different than it is is hopeless. You can spend the rest of your life trying to teach a cat to bark.”

I want reality to be different. I don’t want Theo to have this problem or ANY problem. I want many things that aren’t part of reality. And the realization that I have no control over reality is PAINFUL. It actually hurts to sit in certain feelings that belong purely to reality and are not up for manipulation or debate. But I guess I have to accept that I’m not going to teach a cat to bark (although I’m sure I could find something on YouTube…).

Thank you so much for thinking of us. I really appreciate it. And I’ll keep you posted when we know more.  ❤

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Here We Go

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I’ve been wanting to post about this for a while, but I’m so stinking depressed about it that it’s hard to find the words. I also have been trying, unsuccessfully, to put it out of my mind and not obsess. (But I’ve been obsessing.)

It looks like Theo will have to go to the hospital for a bronchoscopy on November 10. When Theo was about 5 months old, I noticed a wheezing sound when he breathes. At the time, it was diagnosed as laryngomalacia, which is basically a floppy larynx and no big deal. It happens to some kids and, as they get older, the problem resolves itself. Sure enough, when Theo was about 8 months old, it seemed to go away. I didn’t hear the wheezing anymore, and the doctor confirmed that it had resolved.

Then this past August, when he was 14 months old, he developed a much different sound when he breathes. It’s quite loud, and it sounds like he has mucus in his throat — like a gurgling or purring. At first, we weren’t worried. We figured it was a cold. Then it didn’t go away. And it got louder. We’ve seen several Ear, Nose, and Throat doctors. We treated him for allergies (both seasonal and food), asthma, and reflux. None of those treatments had any impact on the sound. Plus, one of the treatments involved medicine that seemed to make everything worse. He had so much mucus and saliva in his mouth that he couldn’t even swallow.

So here we are. Theo is 16 months old, and the sound is as loud as ever. Furthermore, he has started occasionally choking on his food and, when he coughs, it sounds as though he’s fighting a lot of mucus. (Although this mucus has never come up.) But the Ear, Nose, and Throat doctor confirmed it was there by looking down his throat.

Well, now the ENT has to look further to get to the root of the problem, and the only way he can do that is through a bronchoscopy, which means we have to take Theo to the hospital and put him to sleep with anesthesia. Which reminds me of the last time we put one of our children to sleep with anesthesia, and all hell broke loose. (I can’t even bear to go back and look at the posts right now to link to them. But, in May 2013, Emmy had heart surgery and went into cardiac arrest afterwards.)

I’ve been trying to avoid the bronchoscopy. I’ve been trying so hard to solve this problem without any invasive procedures. But it doesn’t seem like that’s going to happen. My amateurish investigative work isn’t getting us anywhere.

The two prevailing theories right now are that (1) Theo might have scarring in his throat or a narrowing in his airway from when he was intubated in the NICU (2) Theo may have a congenital anomaly called a “vascular ring.” Both are pretty hardcore.

Keep in mind that Theo seems fine. He’s growing nicely. He’s talking and laughing and dancing and having fun. He has all the energy in the world, and he actually doesn’t seem at all bothered by this throat issue. Even when he chokes or coughs, he just keeps going. (The rest of us practically have a heart attack every time…)

So what can I say? It stinks. I’m trying my darndest to be positive. But it stinks. And I’m super bummed that we have to go down this road. I just want everything to be all sunshine and roses all the time, you know?? Especially when it comes to my kids.

Well, our pre-op appointment is on November 3.

So here we go…

Two Year Blogiversary

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Happy Green Bagel morning! 🙂 I got an email from a friend this morning, which reminded me that my blog is two years old. Well, there was lots of talk about green bagels this morning, but we didn’t get them because the kids were having them at school.

I haven’t posted in a while, and there are many reasons for that, but I’ll give you a few. Any time that I had to myself went out the window when we moved. Emmy used to be in an all-day preschool, but now she’s home at 11:00 am. Charlotte is home from school earlier too. And I have Theo all day. And Theo likes attention! So when I do get a free second, I try and catch up on my ridiculous pile of laundry.

I’ve had a couple emails from people checking in on us, which put a smile on my face. It’s so nice to know that others are thinking about us. I’ve also gotten some emails from people whose children have been newly diagnosed, which reminds me why I started this blog in the first place. I wanted to show the positive side of Williams syndrome for anyone who is newly diagnosed.

And, as time has gone on, the positives just keep growing and growing. Emmy’s personality is awesome. At 3.5 years old, she wakes up with a big smile on her face every single morning. She is both funny and sweet. When Theo cries, she says, “What’s wrong, sweetheart?” or “Don’t cry, honey.” (Dan and I don’t say “sweetheart” or “honey,” so I have no idea where she picked those words up, but it’s adorable!)

She is also persistent and determined. I signed her up for a gymnastics class and, though she can’t easily do what the other kids are doing, she tries her hardest. If she falls, she gets right back up. She is absolutely driven to do what everyone else does. If I were to tell her that she couldn’t do something because of her small stature or low muscle tone, she would be devastated. So we continue to sign her up for things that are tough for her. We don’t have to push her. She pushes herself. I adore that quality within her because I don’t have that same determination. If I fail at something, I usually bow out. Emmy teaches me to try, try, try again.

Charlotte has turned into an artist:

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She is constantly creating. One of the things I love about our new house is that we turned a possible playroom into a craft room. It still ends up full of toys, but the shelves are lined with paper, stickers, and paint. I love doing crafty stuff, but I rarely have time right now. So I live vicariously through Charlotte. She reminds me so much of myself.

She still misses our old town, and she’s had the toughest time with the transition because she had to leave her close friends and teachers behind. I keep waiting for the day that she’s going to say she loves it here. I hope it will come…

And Theo is into everything!

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He’s 9 months old and very close to crawling. He puts everything in his mouth, and I have to watch him like a hawk all day. He laughs easily, and he gives wonderful snuggles. He’s constantly waited on by his sisters, especially Emmy who checks on him every five minutes. She doesn’t let him out of her sight!

Thanks for thinking of us, and I hope you enjoy your Green Bagel Morning. 🙂

Blog Hop: My Writing Process

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I was in the middle of this post two weeks ago when I unexpectedly dashed to the hospital to have a baby–who is doing great, by the way! Gosh, he certainly gave us quite a scare.

So let’s try this again…

I’m happy to take part in the “My Writing Process” Blog Hop this week. I was invited by Amy Reade, which is one of the best names I’ve ever heard for a writer!

Amy’s blog, called Reade and Write (again, love the title), can be found at http://amreade.wordpress.com. Her first novel, Secrets of Hallstead House, will be published in July 2014, and she has two more novels on the way. One of the things I like best about Amy’s writing is something that she mentions on her own Blog Hop: “My books have a strong sense of place, so hopefully my readers will want to visit the places I write about.” She does a lovely job of painting a picture for the readers, and I definitely find myself wanting to take a trip to the places she describes.

For this Blog Hop, I’ll answer a few questions about my writing process and then introduce you to three other writers, who will pass the Blog Hop along next Monday.

The questions:

1. What am I working on?

I’m working on a memoir about my first few years as a mom to a daughter with special needs. And I just helped edit a fantastic anthology written by parents, family, and friends of people who have Williams syndrome. Here’s a link to the book on Amazon. And here’s a link to the book on the Williams Syndrome Association’s online store. The book is inspiring, heart-warming, funny, and informative. I think that everyone will enjoy reading this book, whether his/her child has Williams syndrome or not. But I also think it will be especially helpful to those parents whose children are newly diagnosed. It gives you a glimpse into possibilities for the future and also makes it clear that you are not on this road alone. I’ve known about Emmy’s diagnosis for almost three years, and I still learned a lot from the stories in this book. I highly recommend reading it!

2. How does my work differ from others of its genre?

My writing falls into the category of memoir/personal essay. I’ve actually been writing memoir for a really long time–well before I had children. For some reason, I can be brutally honest in my writing, something that can be more difficult for me in conversation because I’m kind of shy. But when I write, it’s all out there on the page. Likewise, my favorite memoirs are the unflinchingly honest ones. (And I read A LOT of memoirs.) I don’t respond to a book as much when I can tell that someone is hiding behind his/her words.

3. Why do I write what I do?

If I don’t write about my experiences, they sit beneath the surface of my skin and drive me bonkers. I’ve always felt compelled to just get it out. And, perhaps more importantly, I like that my personal writing builds a connection to others and sometimes offers them advice, comfort, and support.

4. How does my writing process work?

Wellllll, I commit to turning in a draft of a chapter. I put it on my calendar and stare at the date for a while. I procrastinate on the actual writing for a long time, while still obsessively thinking about the chapter topic–turning it over and over in my mind. And then, FINALLY, I find a couple hours before the deadline and pound it out. Very healthy process. 🙂

And now I’m sending the Blog Hop along to these talented writers:

  • Eva Lesko Natiello is a native New Yorker who wrote her debut domestic thriller, THE MEMORY BOX, as a result of relocating to the New Jersey suburbs with her husband and two children. THE MEMORY BOX is a Houston Writers Guild 2014 Manuscript award winner; it will be released June 2014. Eva is a self-proclaimed curious observationist whose oddball musings can be read on evanatiello.com. She improvs songs as a way to dialogue with her kids. They find it infrequently entertaining. You can also follow her on Facebook and Twitter.  
  • Lillian Duggan is a creative writer, mom, wife, wannabe world traveler, and freelance editorial professional and translator. Her short story, “The Orchid,” was published by www.everydayfiction.com in August of 2013. She’s currently working (slowly…) on her first novel. On her blog, My Ideal World, she writes about her efforts to achieve her goals and make her dreams come true one step at a time while raising two children (www.myidealworldblog.com).
  • Rosanne Kurstedt has a Ph.D. in education, teaches at Fordham University and William Patterson University, and is the author of And I Thought About You (illustrated by Lisa Carletta-Vietes), an honorable mention recipient at the New England Book Festival, New York Book Festival, and Paris Book Festival. She was also the recipient of a 2013 Barbara Karlin Grant Letter of Commendation. In addition, Rosanne writes professional books for teachers, including Teaching Writing With Picture Books as Models (Scholastic, 2000). You can visit Rosanne at her website, at her blog, Kaleidoscope, on Facebook, and on Twitter too! @rlkurstedt

And here’s Theo…awww…

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January

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I’m having an interesting time with January so far. I’ve been going nonstop from Halloween through the end of 2013 — holidays, snow days, presents, clutter cleaning, cards, lights, tree, the ambition to do “holiday related” activities; the ball drop at midnight. It was a big rush to New Years.

The self care that I’ve written about before got pushed way to the back burner. I just put my head down and GOT THINGS DONE. Writing is very therapeutic for me, but even that  went straight to the bottom of the list. I actually felt guilty glancing over at my stack of books about writing. I’ve been working on a memoir about the past two years and, if it gets finished before 2045, it will be a miracle.

So, with all the craziness of October-December, I slid into January needing a complete recharge. It was hard for me to get back into writing right off the bat, but I cleaned out the clutter in the study, which is always a precursor to SOMETHING happening. And then I sat down with a few writer friends last week and, wow, did that feel good. It’s funny how some of us completely ignored our writing during the holidays, while others were actually productive. The productivity of others helped ignite that fire within me again. The words of encouragement from friends “You have to finish this book” also moved me forward.

But there’s something else stopping me too. When I write about the past two years, I want so badly to capture how I initially felt about Emmy’s diagnosis, how that feeling sat with me for a good six months and was only chipped away at little by little, and how that feeling is so far from what I feel today. As I move away from that feeling, it’s harder for me to go back where. Was I really devastated by this diagnosis? Really?? It’s hard for me to believe looking at the sweet, funny, good-natured, lovely daughter that Emmy is today. When we sit down at the breakfast table every morning, she gives the biggest, brightest smile and announces what she’s eating. I’ve never seen anyone that happy in the morning–ever! “Yogurt!” she declares, holding it up for me to see. Was I really upset for 6 months about Williams syndrome? Really?? It’s hard for me to even believe it myself.

In order to write about it accurately, I have to go back there in my mind. I somehow have to put aside the smiling cutie pie that I see in front of me and sink back into that mindset. Because even though I’ve moved on from that early time and changed my views on Williams syndrome by 180 degrees, I still feel like the story is inside of me. It’s just sitting there, waiting to come out. It’s been sitting there for 2 years now. I’ve changed, but the story is still heavy on my mind.

It’s the story of how I thought I would never smile again. It’s the story of how I bought every book I could find about having a child with special needs and read them through tears thinking, Is this really happening to me? It’s the story of how I thought my marriage was going to crumble because that’s just what happens, right? And it’s the story about how it was so hard to connect with Emmy for 6 months because I felt as if she were underwater. There was a barrier between my daughter and me and, during one Early Intervention meeting, I broke down sobbing and said, “I feel like she’s underwater. I feel like there’s a veil there, and I can’t break through. I don’t know how to connect with my own daughter.”

Those feelings have completely dissipated now, and the child that was once “underwater” now runs into my arms and says “Huggie!” But that story is still sitting there, and I remember it well.

The thing about writing memoir, though, is that it can hurt to go back there. If I were writing fiction, I don’t think I’d end up in tears just thinking about Chapter 2. And because I don’t want to feel that hurt again, it keeps me from sitting down and writing. Though if I don’t write, I still always think about writing, and that just drive me nuts…

I haven’t written fiction in a long time. I also haven’t read fiction in a long time (except for my friends’ pieces), though I’m starting to get back into it now. Memoir and personal essays really speak to me. A couple years ago, I wrote a very painful, true piece for a writing group. It was difficult to write but, boy, did it feel good to get it out. At the end of the night, we were all filing out into the parking lot, and this woman held me back to say that my piece really touched her because it was so raw and it brought her right back to things she’d experienced as well. That’s when I’m writing at my best–when I can go to that place and not sugarcoat. To me, the words don’t matter as much as the feeling behind it. I can always go back and change the words. But I can only revisit those feelings so many times before I can’t go there anymore. Or, in Emmy’s case, before I become too far removed from those early months and completely forget the pain that I was in.

Emmy will be 3 in July. Can I finish this memoir before then? Before I completely and utterly forget what it was like when my daughter was “underwater”? One of my writing friends suggested keeping a daily word count. That way I won’t get bogged down in revising Chapter 1 (as I’ve already done 100 times…). I just need to keep moving forward–get the story off my chest. Get it DOWN on paper. And, no matter where it goes from there, I will have gotten it out of me. For me, that is therapy.

Hope and Faith

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I am so touched by how many people read and forwarded my last post about Emmy’s complications after heart surgery. I felt support from everywhere. In my scariest and darkest time, I was lifted up by others. I’ve been writing about the power of support for a few months now, and I had no idea how much that would become true after Emmy’s surgery.

I’ve felt that support so strongly as I’ve sat next to Emmy in this hospital room. She’s sedated and on bypass, but I talk to her. I encourage her and cheer her on. I tell her about the people who are rooting for her. I am POSITIVE that she feels it too. Tomorrow they will test her heart a little more to see if it can withstand a gentle move off bypass, and I know I will continue to feel the faith all around.

I started this blog a few months ago and have been getting anywhere from 5 to about 50 visitors on an average day. The most I’ve ever gotten was about 108 visitors. I’m just happy to have 1 visitor!! I’m touched that people would come and check-in with my family, and writing is therapeutic for me.

My last post, in which I asked for support following Emmy’s complications, was passed around from person to person to person. People wanted to help and pray and think good thoughts and offer me hope and faith from across towns and states and countries. It felt like everyone had my back when I needed it most.

That night, I checked to see how many people visited my blog. Even seeing 1 visitor would’ve boosted me up and made me feel like someone was cheering us on.

The number amazed me.

1,079 visitors came to my blog that day!

And they came from many countries — Chile, Turkey, Malaysia, the UAE…

They came from everywhere.

That means that, all across the world, we want so desperately to connect with others–to be there for people in need. It brought tears to my eyes and love to my heart.

It brought love to Emmy’s heart too. I could FEEL it. Just when we needed you, you were right there. From my deepest place of gratitude, thank you.

With your help, I keep cheering her on. “GO EMMY GO!!!”