Little Reminders

IMG_8926

Everyone tells you not to compare.

If you have a child with special needs, you tend to compare that child’s progress to her siblings. Because as much as people tell you not to compare, you can’t turn your brain to the *off* position. If you could turn your brain off, you’d stop thinking about the Halloween candy in the kitchen. Or you’d stop thinking about the phone call you have to make by Friday. Or you’d stop thinking about the next chapter in your life.

But you can’t just *stop* thinking. Your brain turns and moves, turns and moves–as much as you might want to quiet your thoughts. I’ve actually tried meditation many times, and I’ve gotten decently good at it. But even if I sit down to quiet my thoughts for 20 minutes, only 3 minutes of that will be successful. For the other 17 minutes, my mind is still on overdrive.

So if people tell me not to compare my children, it’s impossible because I can’t just shut down my thoughts.

But I want to explain that comparison isn’t a bad thing!

I used to beat myself up about it. I would think: Hmmm…Emmy’s not rolling over yet. I’m pretty sure Charlotte was rolling over by now.

Or I used to think: Was Charlotte able to cross midline this early? Emmy isn’t doing it yet. (Midline = a term I never thought I would have to learn. Now, I know it well.)

And when people would yell at me to stop comparing, I would criticize myself for doing so. What’s wrong with me? Why can’t I stop?! Yet, I was unable. So let me rephrase…

I was thinking.

It’s ok to think, right? Everybody does it. And it doesn’t sound as bad as “comparing.”

When I was thinking about Emmy’s progress in relation to Charlotte, I was simply *thinking.* I love, love, love, love, love Emmy dearly. I think she is amazing and smart and funny and gorgeous and sweet. I feel the same about Charlotte and now, Theo. But my kids are different. They do things on different schedules. They have different personalities. They progress differently. It’s not that one who moves more quickly is better. It’s that one who moves more quickly is different.

When people use the term “compare,” it sounds as though one is better than the other. That’s not true. They’re just different.

And I think it’s ok to observe differences. I think parents should give themselves permission to see the ways in which their children are unique.

There is a parent who has twins with Williams syndrome. She commented that she has a hard time not comparing them. Can you even imagine having twins and being told not to compare? Isn’t that the most impossible task in the world? I mean, how do you NOT compare?

But please understand that these comparisons aren’t negative. They’re just thoughts…observations. As human beings, we have thoughts. And, unless we’re going to meditate 24-7, it’s impossible to shut our brains off.

Now, of course, if you notice that your comparisons are turning negative, that’s a different story. “She’s not crossing midline yet” is different from “Why can’t she cross midline yet when her brother did it so perfectly at 1 month old?” Of course, that’s totally different. And, yes, that would be negative.

But most parents I know are proud of even the smallest accomplishment. Their comparisons aren’t negative. Their comparisons don’t affect their LOVE. These are just thoughts…passing thoughts. Love is constant.

So if you have one of those passing thoughts, don’t beat yourself up (as I did for so long). It’s ok to see differences. They’re just little reminders that your children are unique and special in their own ways.

As you can see, my girls dressed very differently for Halloween. Charlotte knew for months that she wanted to be princess Elsa. That’s it–do not pass go. Emmy, on the other hand, isn’t into princesses. She has always been obsessed with monsters. First, our red, furry friend, Elmo. And now, blue Sulley from Monsters Inc.

I love that she loves monsters!! It’s different. It’s cute. It shows a side to her personality–a fun and daring side. She’s rarely afraid. In fact, when Charlotte didn’t want to stick her hand in the “eyeball” soup at Halloween, Emmy dove right in–grabbing prizes for both of them.

Of course I had the passing thought: It’s funny that Emmy is so into monsters, while Charlotte never was.

But it’s just that…a thought.

IMG_8925

Head Above Water

IMG_9466

My only goal right now is to keep my head above water. This little guy is cute but, boy, can he scream! He’s colicky and is usually crying from about 4:00 pm-11:00 pm. Every single day. He looks calm in this picture, right? He’s good at making you think that everything is going to go smoothly and then…he turns.

I finally broke down and called the pediatrician. I suspected it was colic, so I was trying to be cool, calm, and collected about the whole thing and handle it on my own (with my very helpful husband, of course). I really didn’t want to go to the doctor. I spend so much time in doctors’ offices because of Emmy. It’s exhausting. And the past 9 months of pregnancy have felt like one long, never-ending doctor’s appointment. I just wanted a break.

But one day he screamed so much that he really freaked me out, and I brought him in. Our usual pediatrician didn’t have a free appointment, so I saw another doctor in the practice. Theo was lying on the examining table — screaming, screaming, screaming. The doctor turned him over again and again. He spent a good deal of time looking him over and futzing with him. Despite the screaming, the doctor was totally unphased. He just kept smiling and then, finally, he exclaimed, “Gosh, is he cute!! He looks great, mom.”

Looks great??? I was shocked. I expected some kind of scary diagnosis.

The truth is that it’s hard not to worry. When we found out that Emmy has Williams syndrome, it came totally out of the blue. It was like being hit by a train. I had never thought twice about genetics and, from that day onwards, I know more about genes and chromosomes and syndromes than I ever thought possible. (And I still don’t know even a smidgen of what’s out there!)

But I felt like I got tossed into a world that was no longer carefree. Suddenly, I knew more than I wanted to know. One thing I know is that syndromes can come in the form of pieces to a puzzle. What I mean by that is: you notice one thing, then you notice another thing, then another thing… All of these little things seem random. “Oh, her pinky turns in.” “She has a really big smile.” “She has a heart murmur.” They seem like random little things. And maybe they are. But in Emmy’s case, they culminated in one very big thing — a diagnosis of Williams syndrome.

And now, with Theo, I know too much. If he were my first child, I probably wouldn’t bat an eye at the fact that he held his thumb tightly in his fist in the beginning, that he has major gastrointestinal troubles; that he seems to be developing a rash. I grilled the doctor. I brought my list of symptoms. And I said, “I’m nervous because, with my daughter, there were all kinds of little things that were pieces to a puzzle.”

“I know,” he replied. “But he looks great. Really great.”

I’m a member of various groups on Facebook for parents of kids with Williams syndrome. And a common question is: I’d like to have another child, but I’m scared.

Because even though you love your child with Williams syndrome DEARLY and wouldn’t change him/her for the world, you know too much. You know that life comes with surprises. And you’d prefer not to get another huge shock, especially when it involves the most precious things in your life — your children.

So I left the doctor’s office with a diagnosis of colic. But I can’t promise that I won’t worry. And I can’t promise that I won’t examine every little thing about Theo. And I can’t promise that the wheels in my mind won’t turn endlessly.

But I can promise that I will try and relax and just snuggle and appreciate this adorable little boy, with whom Emmy is completely obsessed.

She’ll ask me, “I kiss him?”

And when I say “sure,” she leans over and gives him a smooch. Again and again and again.

Then she flashes me a huge smile and proclaims, “He so cute!”

And Charlotte strokes his cheek and says, “He’s adooooooorable.”

We all can’t wait until his tummy troubles stop making him so miserable. The doctor tells me that colic should resolve by three months. In the meantime, you know what I’ll be doing tonight from 4:00 pm-11:00 pm…

Blog Hop: My Writing Process

BlogHop

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…

IMG_8874

He’s Home!!

Theo

Thanks for all of your well wishes and words of support! They mean so much! Theo came home yesterday. He spent 8 days in the NICU which, coincidentally, was exactly the same amount of time as Emmy when she was born. Theo had RDS (Respiratory Distress Syndrome) and PPHN (Persistent Pulmonary Hypertension of the Newborn). Emmy, too, had PPHN. Isn’t that bizarre??

It’s probably obvious to parents of children with Williams syndrome that Theo doesn’t have that diagnosis as well. (You start to become an expert at identifying the facial characteristics.) But I can’t get over the fact that both kids had PPHN and ended up in the NICU. (By the way, Charlotte was healthy as an ox when she came out. All 3 kids were full-term C-sections.)

Over the past few years, I’ve become fascinated by genetics. If I had more time, I would study it.

For now, I’m tired and totally spacey. (I can barely put a sentence together. I keep saying to Dan, “Can you get that thing? You know that thing? It’s on the other thing?”) But I am also THRILLED to have Theo HOME!

Oh and I am so thankful for NICU nurses. PICU nurses too. Labor and Delivery nurses too. NURSES IN GENERAL!!!! They took such good care of all of us. Thank you!!

Here are pictures of the girls holding their baby brother for the first time. Charlotte was talking in a sweet baby voice: “Hello, little Theo. Look at your little feetsies!” And Emmy wanted desperately to hug him, kiss him, and hold his hand. She kept saying, “My turn!”

And Theo looks totally different. He lost a bit of weight. We’ll see what he looks like when he fills out more.

Charlotte

Emmy

Happy to be home!

Theodore

Theo1

I was actually in the middle of a blog post on Monday when I clicked “save draft” and headed to my doctor’s office. My blood pressure had been high for the past few weeks, so they asked me to come in for another check. Sure enough, it was even higher. They sent me to Labor and Delivery, where it was determined that we should go ahead with my C-section, three days earlier than scheduled.

I was nervous about the C-section, but I’m nervous anyway when it comes to surgery. It did seem as if my body was giving me signals that it was time. The high blood pressure was a problem and, sure enough, when the OB opened me up she found the uterine window that we’d be warned about.

When I had Emmy, my uterus was very thin, and we knew that we would have to be careful during this pregnancy. A thin uterus could lead to a uterine rupture, which would be bad news for everyone involved. I was monitored during this pregnancy but, sure enough, when the OB performed the C-section a very, very thin window was there. She also saw my baby’s hand under it, waving. So, yeah, we were advised not to have another after this one…

But here he is! My third baby, Theodore. We call him Theo. 🙂

When they put Theo on my chest, I immediately noticed that he was coughing up a fair amount of mucus. I knew right away that he was going to the NICU. I’ve learned so much since Emmy was born. I know the signs. Theo actually didn’t look as bad as Emmy. When she came out, she was blue, ice cold, and had a strange cry (like a cat with its tail caught). Theo, on the other hand, was rosy and warm, and his cry sounded substantial, though a little garbled from the mucus. But I just had a feeling.

Sure enough, Theo ended up in the NICU. His blood sugar was low, but it looked like all he needed was a little intervention and some time to clear the mucus out of his lungs. I actually felt ok with him going there. It wasn’t ideal, but I knew that they did wonderful things for Emmy when she was born, so I wasn’t as afraid as I was the first time around.

I put on my brave, big girl smile and waited patiently for him to come out of it. And he was doing ok for a while…until he wasn’t.

A day or two later (I can’t even remember…), the doctor came into my room to say that Theo was requiring more oxygen support and would have to go on a ventilator. I couldn’t help myself and asked about all kinds of hypothetical situations. And then I just lost it. Everything came up again. And I mean EVERYTHING: Emmy’s time in the NICU, Emmy’s heart surgery, Emmy’s cardiac arrests; Emmy’s crash onto life support. I relived all of it. While Dan went down the hall with the doctor to watch Theo’s vent get put in, a really sweet nurse came to comfort me. I told her that you can only be brave for so long before you just lose it…and I lost it.

When I wiped my tears and was able to make my way down the hall to see Theo, one of the NICU nurses kindly handed me a tissue and said that it’s been a tough few days. I heard myself say, “It’s been a tough few years.”

I was really down.

When I got back to my room, my sister sent me a text that said she was amazed at our positivity when Emmy was in the hospital last year. She was impressed by our optimism and our faith that everything would be fine. She loved that we cheer-leaded Emmy along to good health. Emmy needed that positivity, and luckily it was radiating out of me.

But now it was harder for me to conjure up that positivity. I just felt completely drained. I guess I never thought I would need to harness that ability again. And I didn’t know how I was going to get it back.

Luckily, a wonderful friend called and talked me through it. She’s a very smart and solution-based person, and she’s also spiritual. All of it helped IMMENSELY.

One of the things that was difficult for me was that Theo’s numbers would jump around whenever anyone touched him or talked near him, including his mama. So I had to leave him be in order for him to get better. I felt so helpless. But my friend had a great suggestion, which was to ask for some of Theo’s swaddling blankets, sleep with them, and then give them back with my scent. That made me feel soooo much better. My spirits came back up, and Theo also started doing well.

So now it’s the slow and steady wait. He’s still on the ventilator, but he’s showing signs of progress. I’m sad and exhausted and still in pain from the C-section…but I’m also positive! I know he can do it. I can’t wait to have him home, and his sisters are SO excited to meet him. Emmy keeps saying, “Theo coming!”

Yes he is, Emmy. Sit tight. 🙂

Theo2