Anticipation

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Thank you so much to the many people who reached out to me after my last post, in which I shared that I had breast cancer. I’m sorry for not replying to everyone. There are emails sitting in my Inbox, which I have been meaning to reply to for months. I’ve really had an aversion to this whole cancer thing. I just don’t even want to THINK about it.

Of course, today is the start of Breast Cancer Awareness Month, so I will definitely be thinking about it. But there are just so many emotions that come up. Mostly, I feel grateful that I’m still here. I also feel sadness because the last year was REALLY difficult, and my body was altered in so many ways. I’m still dealing with the side effects from surgery, chemo, and a drug that I will be taking every morning for the next 10 years. I have a swollen arm (possible lymphedema), aching joints, and pain in my feet. My skin has had a horrible reaction to everything too. I thought my acne years were behind me! But then I feel guilty for complaining because at least I’m here on planet earth, and that’s all I wanted in the first place. My emotions surrounding cancer are complicated, and only more writing will help tease them out.

But, for now, I will tell you about our next adventure. Emmy is having kidney surgery next Monday, October 7! GAHHHHH!!! I was telling my husband, Dan, that our life is TRULY a soap opera. We’ve had more “adventures” than we’d care to mention.

Long story short: We did an MRI to check Emmy’s kidneys and discovered that one of them is barely working anymore. From what I understand, our kidneys are supposed to be working at 50/50. Emmy’s kidneys are at 83/17. We have no idea what happened or when it happened, but there APPEARS to be an obstruction. She had an ultrasound done in 2013 which revealed 2 perfectly healthy kidneys.

That was right before her heart surgery…after which she had 2 cardiac arrests and was on a life support machine for a week. Could that have caused the obstruction? No one knows…

The surgeon would like to try and repair the obstruction, which should keep her kidney working at 17%. Unfortunately, the kidney will not restore itself, but we’re trying to preserve the little function that she still has.

Emmy has not had any symptoms and is not in any pain. Her good kidney is picking up all of the slack, so her blood work has always been spot on.

You may know that anesthesia is a huge concern for people with Williams syndrome. (You definitely know this if you’re a parent of a child with Williams syndrome because every time your child has to go for anesthesia, it’s a BIG DEAL.) So while I don’t like surgeries anyway (and, boy, have we had our fair share as a family!!), it’s even more nerve-wracking when the person on the operating table has Williams syndrome.

So now we sit in anticipation of next week.

Speaking of anticipation, this surgery was actually scheduled for September 9th. So we already went through a whole rollercoaster of emotions on September 8th as we drove 2 hours to the hotel where we were due to spend the night. We got a call when we were literally a block away from the hotel. The surgeon had an emergency HIMSELF and was in the hospital. Surgery canceled. When I got off the phone and told Emmy the news, she responded, “Oh, I’m so embarrassed! I did all of that crying for nothing!”

We drove back home in shock, though I also felt a huge sense of relief. We got a call a couple days later saying the surgeon is ok now and that surgery would be rescheduled for October 7.

October is Emmy’s favorite month because it has her favorite holiday — HALLOWEEN!! This kid loves Halloween like no one else I’ve known. She thinks about Halloween 365 days a year. We don’t really know how quickly Emmy will be running around after this surgery, but I am HOPING and PRAYING that she will be able to enjoy trick-or-treating as much as she always does.

I’m also hoping and praying that I keep mentally sane on the day of her surgery. Sitting in the waiting room with a bundle of nerves is something I have done many times now, and it’s very, very challenging. Until then…anticipation…

Here’s a picture of the 5 of us at a Breast Cancer Walk/Run earlier this year. Through it all, we keep on truckin’!

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Surprises

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On May 4, I was doing a breast self-exam, something the American Cancer Society unbelievably no longer recommends (See bullet point 5: American Cancer Society Recommendations). I was performing a self-exam because 10 years ago, my good friend found a lump which was diagnosed as breast cancer, and she had been a vocal advocate of doing these exams every month.

Since having kids, my breasts had become very dense, so I was used to feeling benign lumps. But on May 4, I felt a lump that stopped me in my tracks. My first thought was, “This is what cancer feels like.” It was hard, painful, smooth, perfectly round, and movable. It felt like a marble. But when I Googled the symptoms, mine didn’t match those of breast cancer. Breast cancer is typically not painful, oddly shaped, and doesn’t move. However, I did my due diligence and went to my gynecologist the next week. She felt the lump and said, “I think you pulled a muscle. I’m not concerned.” To which I responded, “We have muscles in our breasts?” And she replied, “Yup!” (I’ve come to find out this isn’t true…yikes.) She handed me a prescription for an ultrasound simply to put my mind at ease but assured me it was nothing as I walked out the door.

I’m a mom of 3 with little time on my hands, and I had just been assured that the lump was nothing, so I promptly put the ultrasound prescription on my desk…where it got buried under a mound of papers.

Weeks passed with the prescription gathering dust, until one morning when I had breakfast with a close friend who had come to town. My friend mentioned that she had a cyst in her breast, and I responded that I probably had the same. I told her my story but said that I was very busy and would wait on the ultrasound. (Charlotte was having surgery around this time because she had a birthmark on her scalp that was possibly precancerous, so the bulk of my attention was focused on getting through that surgery.)

To my friend’s credit, she put her foot down. She said she had heard of too many stories in which a woman said, “I’m sure it’s nothing,” and it turned out to be something. But I was only 39 years old! Surely that couldn’t happen to me.

However my friend ended up saving my life by putting that nugget of information into my head. When I got home from our breakfast, I rustled through the papers on my desk and dug out the prescription. I then set to work on scheduling an ultrasound.

After an ultrasound, a 2D mammogram, a 3D mammogram, and a biopsy, I got a shocking phone call. A radiologist told me that, indeed, I had breast cancer. The reason I say that my friend saved my life is that my cancer was aggressive and fast moving. It was growing all over my breast. Had I put off the ultrasound, like I intended, I would have been in a much different place when my treatment began. I will FOREVER be grateful to my friend for pushing me to get the ultrasound.

Of course, I went through every emotion you can imagine. Name a feeling, and I had it. But the one that kept cropping up for me was actually regarding Emmy!

Up until the breast cancer phone call, the most shocking call I had ever received was from the geneticist who told me that my daughter has Williams syndrome. So I couldn’t get over the fact that I felt like we already had our *thing*. You know how they say that every family has a thing? Williams syndrome was our thing!! I couldn’t understand why we had another *thing*. And a major one at that!

I quickly searched online to find some people to talk to. One woman was a breast cancer survivor who did yoga. Turns out she had another *thing* in addition to cancer. And the more I searched, the more people had lots of *things* in their lives.

So, yes, life is hard. But I sure do love living it! Therefore, I did everything I needed to do to rid my body of cancer. I had a double mastectomy, an 8 hour surgery which was followed by a rough recovery. I then had another minor surgery to put a port in my chest. I had 4 rounds of heavy chemo, which were infused through the port. My hair fell out. I then started a lighter version of chemo, which I will be on through August 2019. I did months of physical therapy to try and get my arms working again. I had another surgery last week to finish the reconstruction of my breasts. And some time early next year, I will start taking a pill that I’ll continue to take for 10 years.

Everyone asks how the kids are doing, and the truth is that they’re ok right now. My parents have been an enormous help, so they were able to keep the kids’ schedules on track. They didn’t miss one day of gymnastics, karate, voice lessons, etc. The people in our town have also been amazing and sent us food, brought our kids on playdates, and checked in to see how we were holding up. And, finally, Dan has been BEYOND BEYOND BEYOND wonderful. He did everything on the home front, while managing a full-time job.

It’s been an exhausting few months for everyone, but I’m actually starting to feel better…finally! I’m still quite bald, which stinks. One day I’ll write about losing my hair, which was more upsetting than I thought it would be. I didn’t realize I was so attached to my curls…

I can’t believe I have to add another category to my blog: Breast Cancer. This was intended to be a blog about Williams syndrome and Emmy’s amazing smile! We’ve had some ebbs and flows in the past 7 years, I guess…

While the diagnosis of Williams syndrome sounded scary at first, Emmy has brought SO much joy into our lives BECAUSE she has Williams syndrome. And I’ve loved connecting with other families who share the bond of Williams syndrome. Even though Williams syndrome was a complete surprise, it ended up being a great surprise.

When I first got diagnosed with breast cancer, I kept wishing that it would also turn into a great surprise. So far, I don’t think so…

However, I will say that I met many wonderful people, whom I would not have met if I didn’t get this diagnosis. And I was incredibly touched by the outpouring of support from family, friends, and the people in our town. I feel bad that my kids had to watch their mom go through this, but I also think they learned a lot about resilience — and about what really matters in life.

So there we go. 39 years old and diagnosed with breast cancer. As my friend always says: Ladies, check your girls! Even if the American Cancer Society no longer recommends self exams, I recommend it. If I hadn’t checked myself, I wouldn’t have found my tumor until months later at my 40 year old mammogram, and my already aggressive breast cancer would surely have spread.

The best day to check yourself is…today! 🙂

Ready for Spring

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Right now, I need to wear flip flops. I REALLY need to wear flip flops. Every year I feel the heaviness of winter and swear I’m going to move somewhere warm. I’m cold all the time anyway, so winter is a double whammy. Of course, the kids are excited about playing in the snow and drinking hot chocolate. But I want to pull the covers over my head and hibernate…

As we move from winter to spring, I’m thinking about how many things have changed over the past few years. Charlotte is 8 years old and has really grown into the big sister role. She looks out for Emmy and Theo, and she especially loves playing “teacher” to anyone who will allow it. (When Charlotte gets out her whiteboard and math worksheets on a Saturday morning, Emmy now runs the other direction. But Theo is still game.)

Charlotte has become very curious about what it means to have a disability, and she’s been vocal about the fact that we should embrace people with disabilities. Last year, she wasn’t saying the word “disability.” This year, I hear it a lot. But she doesn’t see it as a bad thing. She sees opportunities to appreciate the differences in everyone. Sometimes I worry that she’s become TOO obsessed with the idea of her sister having a disability and focuses on it too much…but then I think this is just a phase as she learns what it means to have a sibling with Williams syndrome. Charlotte is interested in everything under the sun — sports, acting, voice lessons, piano, art, gymnastics… I’m trying to narrow down the activities to our top 2, though I once read an article that kids don’t find their true interests until they’re in eighth grade. So right now, we’re still swept up in the wave of…everything.

Theo is the dutiful little brother. He seems to still enjoy being the “baby” of the family, even though he’s 3 years old. I think I cater to that a little bit because I know we won’t have any more kids, so I’m snuggling up the last of those baby feelings. Theo is active! I have a tough time keeping up with his energy. He adores Charlotte and Emmy, though all 3 kids have started fighting recently, which is torture to listen to. But, usually, Theo loves having fun with his sisters. He’s always, always thinking about them when they’re at school. He says things like, “Oh! That’s Emmy’s favorite color!” or “Charlotte likes that toy!” He brings a lot of liveliness and laughter into the family.

Emmy is truly a pleasure at 6 years old. Sometimes parents whose children are newly diagnosed find my blog and send me a worried email, and I swear they think I’m bonkers because I always sound so positive about Williams syndrome. They must think I’m living in La La Land. That’s certainly how I felt when Emmy was first diagnosed and I talked to a parent whose child had been living with Williams syndrome for years. The mom was enthusiastic and…dare I say…happy about Williams syndrome, while I felt as though my world was falling down around me. I couldn’t figure out how that parent was okay with the diagnosis and just assumed she was either on “happy pills” or fooling herself.

But here I am today, and I am completely 100% okay with the diagnosis. Emmy wouldn’t be who she is if she didn’t have Williams syndrome, and she is such a delight. The other day, I took Theo to the library, and the librarian came up to me and said, “I have to tell you something. Your daughter is such a doll. My week doesn’t start until I see her.” I hear that a lot about Emmy. She is a very kind and sweet person. Emmy always wants to know how other people are feeling. She is very sensitive. My aunt Eva died last May, and Emmy still brings her up several times a week because she misses her so much.

I also love that Emmy has brought interests into my life that I wouldn’t otherwise have. She is strangely obsessed with everything Halloween and spooky, which is so funny because her favorite color is pink, and she loves to wear dresses and makeup (!!) and is so GIRLIE. But (and this has been going on for a couple years…) she loves vampires, and skeletons, and ghosts, and zombies. I was never much of a fan of Halloween. I could take it or leave it. Now I see a pumpkin in February, and I drop everything. “Where’s Emmy??? I have to show Emmy this pumpkin!” We’ve been to multiple Zombie Walks, something I never thought I would do. And she recently went to a birthday party at a monster glow-in-the-dark mini-golf place, which brought a huge smile to her face. It doesn’t get much better than that! To see her excited about the monsters made ME so happy. I love that she has interests that are unique. I see the world so differently through her eyes, and that makes life more fun.

Of course we have challenges, and nothing is perfect by any means. But that applies to everyone. As I always tell Charlotte, “If I wanted perfection, I would’ve had a robot instead of a child.” (It makes sense in the moment…) My children are so different and, while one child may be the easiest on Monday, he or she is my most challenging on a Tuesday. It really depends on the ebb and flow of life and whatever is going on with them.

So this is us…today.

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Six Years Old

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Emmy is six years old! She was only one year old when I started this blog. Hard to believe!

Emmy is feisty, fearless, and persistent. Those qualities have remained since she was born. She actually broke her arm at the end of the last school year because she was climbing up a structure on the playground during recess and fell at the very top. (I almost passed out when the school called me. But so far, it looks like she’s healing beautifully.) After her arm was out of the sling, we walked by the school playground and she casually asked if she could climb that structure again.

“That one??” I asked. “You fell from that one!”

She smiled and started climbing. No fear whatsoever.

When we were trying to plan her activities for this year, she asked if she could take karate classes. I wasn’t sure about karate… Let’s just say that it’s not really my speed. And a friend said that it really tests your balance, so I was concerned that Emmy would have an especially tough time.

When we showed up early for our trial class, we got a chance to see the older kids sparring. Emmy sat on my lap while we watched the kids really going at each other. My eyes nearly bugged out of my head. I was going to sign up my little darling for this? I figured that after watching the sparring session, she wouldn’t want to do it anymore. Clearly I do not know my daughter!

“Are you sure you want to do this?” I asked nervously.

“Yes. I love it,” she replied, smiling.

So now Emmy takes two karate classes a week. She was right. She loves it.

It’s interesting to see the activities that really capture her interest. She’s tried dance, gymnastics, piano, t-ball, yoga, and soccer. And while she enjoys them, she will drop everything for karate and swimming.

She also loves arts and crafts, but I fear that this interest is really about being destructive. One thing we still struggle with it that Emmy likes to tear things about. I know that this can be common for kids with Williams syndrome. But for a neat person like me, there are some growing pains associated with this one.

For example, Emmy loves to use scissors. And I trusted her with scissors because she does a solid job cutting paper and has never cut her skin. But one day I popped my head into the study to see that she found a bunch of her nice bracelets in a jewelry box and cut them up. Ughhhhh.

Or she’ll take a bottle of glue and, at first, she’ll be purposeful about where she puts it. And then, it’s all over…

Or, we were watching Charlotte’s soccer game the other day, and I gave Emmy a piece of paper and pencil to keep her busy on the sidelines. The paper had interesting designs on it that you could trace. She turned it over to the back and started poking holes in it.

I can tell that she gets a thrill out of being destructive.

But I’m being nit picky here. Most of the time, Emmy is a pleasure. Her personality is awesome. She’s usually in a good mood and smiley. When she does get upset, there is always a legitimate reason behind it. I don’t think she’s ever thrown a tantrum “just because.”

Emmy still loves Halloween. She talks about Halloween from January through December. She’s actually brought a new joy of Halloween to everyone in the family. I wasn’t majorly into Halloween when I was younger. I liked the candy, but that was about it. I was much more of a Christmas kid.

But now, Halloween is such a happening in our house. We have a store nearby called Spirit Halloween with zombies and werewolves that pop out when you walk in. When we went on our first Spirit Halloween visit this fall, it was practically a sacred event. I even took a video of us walking through the hallowed doors and getting scared by the fake spiders that jump out. I think Charlotte and Theo also appreciate Halloween even more because of Emmy. When we drive by houses with Halloween decorations, everyone in the car gets especially excited to point them out to her.

While Emmy’s personality is lovely and she’s a joy to be around, my heart still hurts as I watch her struggle in different areas. She’s repeating Kindergarten this year. She actually entered Kindergarten on the younger side, at five years old. And she immediately stood out in every class picture because she is so tiny. She loved school last year and never complained, but it was tough for her. Once school started, everyone was off to the races. And while other kids progressed quickly onto writing sentences, we were still practicing how to write Emmy’s name. Thankfully, this year, she’s holding her own quite nicely. School only started a few weeks ago, but she’s with the pack much more than last year. I’ve already seen significant gains in her progress.

Emmy has a new phrase: “A little help.” The first time I heard her say it was when she was riding her bicycle with training wheels and got stuck on a dip in the pavement. She continued to push the pedals around and around, but they just kept grinding. She is a persistent kid, so she tried desperately to get herself out of the rut. Finally, she looked my way, flashed her adorable smile, and asked, “A little help?” I’ve heard her say it a few times now. It’s very gentle; very sweet.

The truth about Emmy is that she doesn’t WANT help. She wants to do everything herself. But sometimes, she NEEDS a little help. I think this is a misperception about people with special needs. I’ve heard it said that people with special needs expect things to be handed to them — or that they needlessly demand help with every little thing. I’ve found it’s just the opposite. Emmy doesn’t WANT the help. She would love to be able to do everything herself. But sometimes, she NEEDS a little support to make it over the finish line.

When she does struggle, it’s hard to watch. Every morning, as she reaches for the banister to walk down the stairs, her hand shakes slightly with an intention tremor. I think her brain is still getting in sync with her nervous system early in the morning because it’s most obvious at that time and then subsides as the day goes along. Other people would probably not even notice the shaking. It’s so slight. But I feel it in my heart. It’s that tiny, little shake that is the give away. Things are harder for her, even though she never complains.

Emmy just adores her brother, Theo. If she could smother him with kisses all day, she would. He mostly runs away from her smothering, but they have a ton of fun together. They’re little buddies.

And Emmy looks up to Charlotte, who has very much adopted the big sister role for her younger siblings. Charlotte is a caretaker, but I’m conscious of the fact that I don’t want to put too much pressure on her. We had a disagreement over the summer where I asked her to watch Emmy at camp, and she pulled the reigns too tightly around Emmy’s fun. So we had to talk about what it means to “keep an eye on your sister” versus chasing Emmy around and telling her to not participate in activities because she might get hurt. But Charlotte has always been mature and, at eight years old, she was able to embrace that concept a bit better once we talked about it.

As time moves along, we all find our roles. It’s interesting to see them sway and shift as school, activities, and friends circle around our lives.

My goal this year is to move towards Minimalism. You know these guys?: The Minimalists

I’m very, very good at acquiring STUFF. It’s somewhat of a speciality. So I’m dipping my toe in the pond of minimalism, starting with The Minimalists and everyone’s favorite declutterer, Peter Walsh. As I look over all of my STUFF, I realize that this needs to be a major overhaul. Wish me luck. 🙂

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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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School

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School is hard. We’re about halfway through the year in Kindergarten, and it’s tough. I knew it was going to be difficult. I heard many of the older kids at past Williams Syndrome Conventions saying they hated school. That always broke my heart because of the way in which they said it. Sure, everyone “hates” school. Every kid would much prefer to stay home and watch tv all day. But these kids hated it because of how hard it was for them — and sometimes because of how their teachers reacted to them. They didn’t necessarily want to sit home and watch tv all day. They just wanted to be able to do their schoolwork without a major struggle.

When you perceive things differently because of your genetic makeup, schoolwork is a struggle.

We have a couple challenges on our plate right now. The first is the visuo-spatial difficulties that we’d always heard about regarding Williams syndrome. This blog, written by a Williams syndrome mom and Science teacher, explains it nicely: http://understandingwilliamssyndrome.blogspot.com/2012/04/visuo-spatial-difficulties-and-how-they.html

We’ve seen Emmy struggle in the past with visuo-spatial relationships. But now that she has to put pencil to paper every day, I see how difficult it is for her to even write her name. Imagine if you practiced writing your name every day for a year, and it was still difficult for you. Imagine if you were asked to write “E,” “M,” “M,” “Y” on a lined sheet of paper, and no matter how hard you tried, you couldn’t write those darn letters on those lines. For an “E,” you have to first start with a straight line down, and that is often a wobbly line, but it’s getting better. Now, you have to do those three little lines to finish your “E,” and it’s absolute torture. You can’t get the small lines to follow the lines of the paper. In Kindergarten, those are called the sky line, the plane line, and the grass line. You have to draw your three little lines exactly ON the sky line, plane line, and grass line. Yours are often above or below, and you spend a long time trying to fix that. Now that’s just the “E.” That takes a good five minutes to work through, and it still isn’t properly lined up. On to the “M” and so forth…

Now imagine that this skill comes easily to all the other kids, and they’re flying through name writing and onto sentence writing and onto story writing…and you’re still back trying to get that darn “E” on the page.

So our second challenge is the pace of the work. The other kids are easily off to the races but, because of Emmy’s challenges it takes us a long time to do the tasks that take other kids two minutes. So homework usually takes over an hour and a half, and that’s after a full school day.

At the last Williams Syndrome Convention, we had an awesome keynote speaker named Paul Daugherty. He is the father of a young woman with Down syndrome, and he wrote a fantastic memoir called An Uncomplicated Life. I both laughed and cried through the whole book. My favorite chapter is called “Homework.” It’s the most simple chapter title, and it sounds like it would be the most boring read. It is unbelievably beautiful. He writes about the homework struggle, and how it affected both him and his daughter, Jillian. Their relationship could be mirrored by homework. He would go bonkers with frustration at 11:00 pm at night when they were still working on spelling the same one word that they had been working on for hours. And she would keep her positive spirit and persist, even though it was tough for her.

I read that chapter over the summer before Emmy started Kindergarten. In a way, I am living it now. I’m not going bonkers at 11:00 pm, thank goodness! Hopefully that won’t start until the high school years. But I am aware of the fact that we drill the same sight words every night, and even though Emmy seems to know the word “the” on Monday, she won’t know it on Tuesday.

But like Jillian, Emmy’s positive persistence is a beautiful thing. She sits down at the kitchen table every day with me and does her homework with no complaints. None. She  just smiles her way through it even though it’s so freaking hard for her. I see her fingers struggling to write those lines. I see her steadfast concentration when she stares at the sight words. And I know that none of this is easy.

It’s amazing that Emmy is willing to try and that she’s persistent. If this were me, struggling to write my name on the lines after a year of trying, I might have broken my pencil in half and said, “You know what? SCREW THIS!”

Not Emmy. She smiles and often cheers herself on. When she claims a tiny accomplishment, she’ll say, “I did it!” And if I try to gently feed her a sight word, she’ll say, “I can do it myself.” If she gets a sight word right, she shrieks for joy and hugs me tightly around my neck.

We have other challenges too. Math is a doozy… Yikes. Math makes me want to pull the covers over my head and go back to bed. I have my own issues with math, so I’m having a hard time teaching math to someone who also struggles with number sense — but in different ways. Emmy doesn’t see what I see when I place counting bears on a table. I can figure out how to help her with writing and reading, but I still don’t have my math strategy down. I have to ponder that one.

But we do have some major accomplishments too! Emmy is reading! She’s really impressed me with her reading skills, and I’m seeing a lot of nice gains in that area.

And even though I’ve highlighted some challenges, Emmy has progressed tremendously since the beginning of the year. She is making huge, huge strides, albeit at a slower pace than the other kids in the class. But the progress is very much there.

So the last challenge falls on me, her mom. I have to keep my patience and a positive attitude. I am actually a pretty patient person, which is helpful. I try not to lose my cool too often. But positivity isn’t necessarily my strong suit. I can get discouraged. I can see the huge mountain ahead instead of the little, AWESOME gains we’ve already made. I can get into a spin cycle in my head about what my dreams and goals are for Emmy and whether we’re on track.

I really don’t want her to hate school. I’m wondering if there are any older kids with Williams syndrome who like school?? I’m hoping so? I’m trying my hardest not to put too much pressure on Emmy so that it makes her hate school, while also balancing the need for her to still do the work and make progress. That’s a tricky balancing act. I’m working on it!

Ok, now for some other updates. Thank you for all your support during Theo’s hospital stay a while back. I think we have FINALLY figured out what is going on with him. He has enlarged adenoids and tonsils. He also possibly has asthma, though he’s too young for that diagnosis yet. For now, he’s on medicine that shrinks his adenoids, and he has been doing MUCH better. He has much less drooling and much less mucus in his throat. He’s like a different kid. But he’s a boy, so he still runs around like a maniac. 🙂

And Charlotte is doing great. She loves school, sports, dance, and especially art. She’s a sweet kid and a very helpful big sister.

So here we are! (Well, except for me because I’m always behind the camera.) Happy January!

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Doing All Of The Things

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Our babysitter was telling me about how she was excited to see a friend that she hadn’t seen in a while. The friend said, “Can we do all of the things?” And our babysitter replied, “Yes, we will most definitely do all of the things!”

Every time I think of this expression, it makes me laugh. I guess it’s a new expression that means “doing everything we love to do”?? I guess??

Sometimes I’m tempted to use it in conversation, but then I think people would accuse me of trying to be younger than my years…

But I do think of this in terms of Emmy. I want her to do all of the things.

I want her to play sports, go to dance class, take an art class, participate in the various clubs at school…

She doesn’t have to do anything she doesn’t WANT to do. But I want her to have the opportunities that any typical child has.

Some experiences have been easier than others. We have a gymnastics studio near us, and the teachers have been awesome with Emmy. She takes classes with her peers, but the teachers will modify a little bit for her. One student might walk across the balance beam on her own, while Emmy will get a little support from the teacher. One student might do a cartwheel flawlessly on her own, while the teacher might hold Emmy while she practices her cartwheel. But she does everything that everyone else does, and the teachers have been very happy to accomodate for Emmy’s needs. I didn’t even have to ask them. They just did it.

On the other hand, we have had a doozy of a time with dance. I enrolled Emmy in ballet classes at a very strict studio. It wouldn’t have been my preference, but Charlotte really liked the studio at first, and she wanted to go there. I’m a big proponent of having Emmy try everything that Charlotte does. So I signed Emmy up for the class, but I also told them that she has Williams syndrome because I knew that the standards of the studio are more strict than others. For example, a student would have to pass a “dance test” before moving to the next level.

The receptionist gave me the side-eye and said, “We can put her in our youngest class…We’ll start her there…That’s as young as we go…”

This was one of those situations that made me very uncomfortable. I could feel the judgment. I knew that the kids would be younger than Emmy. But I also felt that this person wasn’t keen to have her in the dance school — period — and this was a way to get her in. After all, the aim of this school is to build up dancers in a very strict, professional atmosphere. If Emmy couldn’t perform the steps, how would the teacher react?

But, on the other hand, Charlotte took a practice class, and the teacher was great. I really wavered back and forth on this, but I signed Emmy up nonetheless and put her in the youngest class.

The interaction with the receptionist made me feel “less than.” It made me feel as though I had to apologize for intruding on the professional atmosphere of the school. It made me feel as though I had to make excuses for my child who was born as she was — through no fault of her own.

I should have known *at that moment* that this wasn’t the right place for us. But, you see, I want Emmy to do all of the things! I want her to wear her little ballet outfit with her hair up in a bun. Mostly, I want her to have the exact same opportunities that Charlotte does. If Charlotte is accepted into the class as a typical child, I want Emmy to be accepted as well.

Here’s the irony. The class ended up being a disaster but not for the reason I imagined. It wasn’t because Emmy couldn’t keep up with the steps. In fact, because the kids were younger than Emmy, they were totally out of control! They didn’t follow directions. They cried during the whole class and ran out of the room constantly. I don’t blame them one bit. They were quite young! But that wasn’t the class for Emmy. Just because Emmy has some challenges doesn’t mean that she should immediately be placed with younger children. It was really illuminating! Emmy surpassed these kids in maturity. I asked the teacher to move Emmy to the next level, and she declined. She said Emmy was placed correctly. I kindly disagreed.

This is a dance school that many people praise, but we ended up leaving. It just wasn’t a good fit.

That interaction soured me to dance for a while, but it was something that continued to eat away at me because Emmy loves to dance. I didn’t want to deny her the experience of a dance class just because of this one situation.

After a few months, I decided that we should try a free practice class at another dance studio near here. It’s a very popular studio, but I’ve heard that it isn’t as strict as the first.

Everyone seemed very nice — the owner, the receptionist…we were off to a good start! This time, I didn’t tell them that Emmy has Williams syndrome. I didn’t want them to put her in the younger class again. I couldn’t risk another experience like the previous one.

This class was for five to seven year olds, so both Emmy (at age 5) and Charlotte (at age 7) would be in the same class. It’s an “acro” class, so it’s like “acrobatic dance.” Charlotte would look out for her sister. This seemed like a good set-up.

I dropped the girls off in the class and was lead to an area where I could watch them. As the minutes passed, I almost cried. I couldn’t hear what they were saying, but I could see how the teachers were treating Emmy. When she couldn’t get into a straddle perfectly, they stood over her and admonished her. When Emmy did a bridge (which is really hard for someone with Williams syndrome!! Really, really hard!!), I could tell that they weren’t impressed. They weren’t kind. I walked back in the class, picked up Emmy, and carried her out of the room. The teachers saw me and completely ignored me. Charlotte came running over and said, “This isn’t going well.” I asked her if she wanted to leave, but she said she would finish out the class. I watched the rest of the class while holding Emmy in my arms. I was fuming.

After it was over, the teachers walked out of the room and looked at me with disgust. They didn’t say anything to me and just marched by.

“What happened in there??” I asked Charlotte.

She was rattled. “Mom, they were so mean to Emmy. She did that bridge, and it was AMAZING! Emmy said, ‘Am I doing a good job, teacher?’ and the teacher said, ‘No.’ Can you believe that? I WAS SO PROUD OF HER!”

She continued. “I could hear the teachers talking about Emmy. They said, ‘What’s wrong with her?’ And ‘I thought she was supposed to be five years old?'”

Charlotte was very upset. My seven year old knew this wasn’t right.

I was appalled by the way they treated Emmy, and of course we didn’t go back. Friends told me to contact the owner and express my disapproval. I haven’t done that. In the past few weeks, I’ve heard similar things about this studio, so it makes me feel as if this is the atmosphere, and I don’t know that things will change if I speak up. But maybe they will. I don’t know. The whole experience really upset me, and I kind of just want to move past it.

But I want Emmy to do all of the things! Just because other people don’t know what class she fits in or don’t understand her challenges doesn’t mean that she shouldn’t have the opportunity to do all of the things, right? The Americans with Disabilities Act is something with which I have become very familiar. It protects my daughter. She should be able to experience everything that everyone else does. However, the Americans with Disabilities Act doesn’t change people’s reaction to her. While she may be able to DO all of the things, she may not be viewed in the same light  — or with the same promise — as the other students. That part is rough.

You know what? Third time’s a charm.

A mom told me about yet ANOTHER dance studio that just opened. The owner, she said, is fabulous — very kind and understanding. I pushed my misgivings aside and only saw hope. I emailed the owner and explained our situation. I told her about Williams syndrome, and I also told her briefly about our past two experiences. I told her that I don’t want Emmy to be automatically put with the younger kids, but I also don’t want her to be admonished for not doing the steps properly when she ALWAYS, ALWAYS tries her best. I asked if we could figure out a class that might be right for Emmy.

She called me right away. She told me that my email broke her heart and that she would absolutely find the right class for her. She did, and Emmy loves it. It’s another “acro” class. She is with her typical peers that are her age, and the teacher helps her when necessary. She gets some modifications. When she has trouble with a big cartwheel, she tries a small cartwheel. And her bridge has only gotten stronger and more beautiful. The teacher consistently praises her effort. It is a wonderful experience. They have made us feel welcome and included.

I don’t know why every place isn’t like this. It took us three chances to find a place that would accept us as we are. It’s not that I’m being difficult or that I’m expecting special treatment. I just want Emmy to be able to do all of the things that everyone else does. I think that’s reasonable. In fact, I know it is.

Williams Syndrome Convention

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We drove for 9 hours to get to Columbus, Ohio…with 3 kids in the car. When we first signed up to attend the Williams Syndrome Convention, it seemed like the drive would be palatable. But as the days inched closer, I kept turning to Dan with fear in my eyes and saying, “I think we should reconsider…can we cancel?” I was freaked about that drive.

Well, as Theo loves to say, “Weeee DID IT!”

And I’m so glad we went! It was worth every minute in the car and then some.

When we first arrived at the hotel, Dan and I were totally out of sorts. It took us a while to get the stroller out, grab our suitcases from the car, and chase kids around the lobby. The kids were anxious to do everything immediately!

As we were checking in and trying to calm them down, Charlotte started to notice all the people with Williams syndrome in the lobby. We had already been to a Williams Syndrome Convention in Boston in 2012, when Charlotte was only 3 years old, but she didn’t have any clue about Williams syndrome at that time. Now at 7 years old, she understands a little more about it, and she started to take in the sight of all the friendly people in the lobby.

It’s interesting to see how the week has an effect on you. When we went to the Convention in Boston, Dan and I were at first overwhelmed by the friendly nature of people with Williams Syndrome. Emmy was only 1 year old at the time, so we didn’t have a strong idea of how social she would be. Plus, we’re quite reserved ourselves. So when people started approaching us right off the bat to have a chat, we were a little thrown off. As that week went along, we totally embraced the culture and loved every second of the friendliness. There’s something so awesome about someone remembering your name and greeting you with absolute joy every time she sees you on the elevator. We missed that feeling of joy like crazy when we got back home.

Just like us, Charlotte wasn’t used to the friendliness. As she looked around that lobby, she said cautiously, “I think I’m the only person here who doesn’t have Williams syndrome…”

“You’ll see lots of people here,” I said. “Can you tell that Emmy has Williams syndrome?”

“No, definitely not,” she replied.

Charlotte just sees Emmy as her sister. She doesn’t really think about Williams syndrome.

Later at dinner that night, Charlotte seemed to really ponder the idea of “Williams syndrome.” I could see her working over it in her mind as she sat next to Emmy in the restaurant booth. She was studying her face.

Finally, she said, “Mom, I can see it.”

“Huh?” I asked.

“I see it in Emmy. I see it in her lips.”

As the days went on, Charlotte met many people with and without Williams syndrome. I could visibly see her grow more and more comfortable with everyone’s friendliness. She allowed herself to loosen up and just enjoy all the different personalities. I have a very boring saying that I tell her all the time that kind of sums up life: “Everybody’s different!” We use that one a lot, especially when kids on the playground ask why Emmy is smaller than everyone else or why she can’t run as fast as the others: “Everybody’s different!” I’ve noticed that it’s a good way for Charlotte to close out a conversation with a kid on the playground who keeps prodding her about Emmy. Who can possibly argue with “Everybody’s different!”??

During the week, Charlotte went to a YMCA camp (organized through the Convention) and made a bunch of friends — mostly typical siblings of people with Williams syndrome. She really got along with these kids nicely! Every night she was bubbling over with stories about her new friends.

Emmy and Theo also went to camp in the hotel. There were all sorts of activities for them to do throughout the week. I think Emmy’s favorite part was meeting Batman. She has no fear. Ever.

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While the kids were at camp, Dan and I attended sessions and learned a lot! I have to sheepishly admit that I thought I was pretty much an expert at Williams syndrome after 5 years with Emmy. There is SO MUCH more to learn! There were plenty of people with grown children in their twenties and thirties who still came to learn — and perhaps mostly to share their stories with others.

My favorite session was the exact same favorite that I had at the Convention in Boston: the sibling session. When you hear brothers and sisters talk about their siblings with Williams syndrome, it immediately brings tears to your eyes. It would be IMPOSSIBLE not to cry in that room. They see their siblings like no one else can. And they’ve become more tolerant, understanding, and patient people because of their siblings. Many of them go into teaching, physical therapy, or music therapy. Many of them volunteer at Williams syndrome camps, and many of them were volunteers at this Convention. Imagine learning the beauty of volunteerism as a young teenager? That has to change your life.

The siblings said that coming to these Conventions every couple of years really helped them to better understand their own brother or sister with Williams syndrome. They encouraged us to keep bringing all of our kids because it helps the typical siblings to comprehend Williams syndrome and helps to foster understanding and appreciation of their brothers and sisters, instead of frustration or resentment.

So of course Emmy and Theo had a great time at the Convention. They just played and had fun all day. Theo didn’t know why we were there because he’s too young. I think Emmy is starting to understand Williams syndrome just the tiniest bit, but it’s still very much of a foreign concept. But we didn’t know how Charlotte would react. I know it sounds silly, but being surrounded by friendly people can be overwhelming. Of course, it shouldn’t be that way. In a perfect world, everyone would be friendly! But our society is generally more closed off, so it’s like being in an alternate universe when you’re surrounded by social people who approach you without reservation.

To our delight, Charlotte had the most amazing time. She declared that it was the best vacation she’s ever been on!! She really, really loved it. Kudos to the Williams Syndrome Association for putting together an awesome Convention that had my 7 year old gushing!

On the last day, we were standing in the lobby checking out, and several adults with Williams syndrome came over to talk to us. One woman pointed at my kids and said, “They are so adorable!!” Then she looked closer and said, “Which one of you has Williams syndrome?”

I was surprised to see Emmy raise her hand right away and say, “I do!”

I’m not sure that she knows what Williams syndrome is, but now it’s official — she definitely knows that she has it.

We can’t wait for the next Convention! Especially Charlotte.

A New Twist

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So here’s a fun, new, little twist. We found out that Emmy has Celiac disease!

She’s always been petite, which we attributed to Williams syndrome. But she’s also fatigued most of the time, which we also thought was related to Williams syndrome (and the low muscle tone that comes with it). Stomach problems were only an occasional thing, so Celiac disease never crossed our minds.

I brought her to a new doctor to discuss Emmy’s growth, and she asked if we have any allergies in the family. I have a sensitivity to gluten and dairy, but other than that, no formal allergies. The doctor said, “Well, since we’re getting her blood taken, let’s check her for Celiac disease because of your gluten sensitivity.”

During that time period, our attention immediately focused to Emmy’s heart because a few doctors heard a heart murmur (which hasn’t been heard since before her heart surgery in 2013), and there was a scramble to get an appointment with our cardiologist. I was totally focused on her heart, which is ok — thank goodness, and I put the discussion about Emmy’s growth temporarily out of my mind.

On the same day the echocardiogram of her heart came back ok, we got a call from the first  doctor to say that Emmy has Celiac disease, and her numbers are off the charts! (They don’t even need to do an endoscopy to confirm the results because her numbers were so high.) I was shocked but also so incredibly relieved about her heart that I thought, Hey, we can handle Celiac disease. No big deal. Especially because I’ve been gluten-free for a while, so I already had some familiarity with what it means to eliminate gluten.

Then, as the days passed, I realized:

  1. A child going gluten-free is totally different from an adult. I’m ok with salad and nuts. Emmy wants mac-and-cheese and chicken fingers.
  2. Eating out will never be the same. We can no longer just grab something anywhere at anytime.
  3. Birthday parties are going to be a bear for her. When the other kids are having the standard pizza and cake, I’m going to have to find an alternative for her. (Incidentally, am I supposed to show up with my own pizza and cake?? This is going to be a weird situation and has the potential to alienate her from her friends. I’m nervous about this one…)
  4. Classroom parties at school are also a problem. For her St. Patty’s Day party, my husband Dan had to quickly bake some gluten-free cupcakes.
  5. Emmy has a severe level of Celiac disease, so she has to wash her hands after touching something as innocent as Play-Doh (which has gluten apparently!), and we have to read every label to make sure that the food wasn’t processed in a facility that also processes wheat.
  6. My very first blog post, Green Bagel Morning, takes on a whole new meaning. When I wrote that, I never would’ve thought that we’d have to stress about something as simple as green bagels three years later.
  7. Oh and…I’m going to have to learn how to cook. Ughhhhhhhhhh. And BAKE. UGHHHHHHHHHHHHHHHHHHH.

About that last one… I’m an ok cook, but it doesn’t come easily to me AT ALL. If you want to see me pull my hair out, give me a recipe. It’s all so overwhelming. I actually go into panic mode. I will read a recipe ten times and still not know what I’m supposed to do. All the words start to blend together, and I begin to have a mini panic attack.

If you don’t believe me, consider this. The other day, I asked Dan if we have a Cuisinart. He started laughing and said, “Of course we do! We got that for our wedding!” Then I asked him to show me where it is. And because it all became so daunting (with the blades and everything — yikes!!), I asked him to just take out the Cuisinart and leave it on the counter. It’s been sitting on the counter mocking me for about a week. I haven’t touched it…

But I can throw together an ok meal (usually sans recipe because I just go for the trusty olive oil and seasonings). However, baking is a JOKE. Here’s a secret: I have not baked anything from scratch ever. EVER. EVER. EVER.

Well, that’s not entirely true. I did try once. When we were trying to sell our house, I was thinking of ways to make it smell nice for a showing, and somehow I came to the conclusion that baking brownies was the answer! Because recipes make me panic, I just casually glanced at a recipe and then threw the following in a pan: eggs, butter, cocoa, baking powder, and something else (maybe milk?). I stirred it all together and baked it! Ok, I have to say that it smelled AMAZING. It actually smelled like brownies, and even our realtor commented that the house smelled great. I thought, This baking thing isn’t so hard after all!

But when Dan came home, he made the mistake of taking a bite. I think he’s still recovering…

That was the last time I attempted to bake anything.

The picture at the top of this post was taken when I discovered a gluten-free bake shop! It’s an hour away, but I’m willing to drive. The kids loved it!

So here we go on our new journey. Hang on tight! 🙂

Four and-a-half Years Old

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Here is our sweet, funny, smart, beautiful, persistent, and loving Emmy. She is everything I thought she would be. Not at first, though. Not when we found out about Williams syndrome. I wasn’t ok with the diagnosis at first and I thought, “Please just let me be ok with this by the time she’s 8 years old.” I gave myself ample time to let it sink in.

Turns out that I only needed a year, but I’m glad I gave myself 8 because I think creating space is important.

I was ok with it after a year. I was totally accepting of the diagnosis, and I was completely in love with Emmy–just as she was.

And then she changed. Into more. And more. And more. And more. At four-and-a-half years old, she puts me in a state of constant awe.

She is, truly, as sweet as her smile shows.

She shares EVERYTHING. I took her to the library, and the librarian gave us a donut. Emmy said she wanted to save it until we got home, so she could share it with Charlotte.

She will readily give Theo a toy that she’s playing with–no hesitation. “Here, Theo. Have this.”

She says things like, “I love you so much, Mommy” and “You’re the best mommy ever.” (Which isn’t true, but I love hearing it nonetheless.)

She is also witty and sly. With a more crooked version of her beautiful smile, she’ll goad Charlotte on. She definitely knows how to push buttons, but she does it in a funny way. If we’re eating a more adult-friendly meal like pot roast, she’ll knowingly say, “Good news, Charlotte! We having mac-and-cheese for dinner!” Then Charlotte will get all pumped up…only to be disappointed when she reaches the table. Emmy finds that hilarious.

Or before Christmas, I was telling the kids that Santa brings presents to children who are nice; not naughty. So of course Emmy would offer, “Naughty like Charlotte??”

Charlotte is far from naughty, but Emmy totally knows that and loves to try and get under her skin sometimes.

Emmy is very smart, and I feel for her because she KNOWS a lot, but her hands don’t work fluidly with her brain quite yet. So while she knows all the letters, writing is very difficult for her. I watch her hands shake slightly as she struggles to hold a pencil. Drawing a smiley face is an unbelievable accomplishment. I recognize how frustrating it must be to have your mind go one direction and your body another.

But, boy, is she persistent! This kid DOES NOT GIVE UP. She gets up on the balance beam with everyone else in gymnastics. She gets scared. Sometimes she cries. The teachers are wonderful and help her the whole way along. And at the end, she always says, “I did it!! I’m so proud of myself!”

Emmy has therapists in school, and they are consistently reporting back to me that she comes to the therapy room with a smile on her face, ready for anything–even if it’s hard. It’s funny because sometimes they say, “It’s a pleasure to work with Emmy.” And I picture this 4 year old in a little pinstriped business suit, marching off to work in the therapy room. What a trooper!

Our life is quite typical…I think. Emmy likes to do everything that every other 4 year old does. She likes to get her hair braided and put on pretend makeup. She has favorite outfits, and she’ll often ask me if I washed her pink polka-dotted sweatshirt. She loves going to the park, and (naturally) she loves anything with sugar.

She also can be obsessive about things, which I think is more of a Williams syndrome trait. She might ask a question 100 times (like “Where are we going?” even though she knows exactly where we’re going). She also will become obsessed with certain “themes.” For the past year, she was into anything scary (vampires, ghosts, zombies, etc). There’s nothing quite like sitting across from an adorable 4 year old at dinner and having her ask, “What you like better? Werewolves or goblins?”

Right now, her theme is still anything scary, but she’s also introduced CANDY. So now it’s “What you like better? Skittles or Twizzlers?” We have treat nights on Monday and Friday, so all week long, she’ll ask, “No treat night tonight, right?” And then on treat night, she’ll say all day long, “Don’t forget!! Treat night tonight!”

The obsessive stuff can be rough when I’m tired. I usually just answer her questions repeatedly, but sometimes I’ll stop and say, “Emmy, you already asked that question, remember?”

And then she’ll say, “Oops! Sorry!”

She’s so cute.

In a way, I can’t believe I gave myself 8 years to be ok with this. That seems like a long time, when I have someone so irresistible right in front of me. But when you have a baby in your arms who you’ve barely met, and you’re reading about a scary diagnosis, all you can do is promise yourself that–in time–this will be ok. In time, you will accept and even appreciate the sweet gift before you.

Luckily, she is everything I thought she would be–and much, much more.