Category Archives: Present Living

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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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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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.

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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Change

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A couple months ago, we were driving back from visiting my sister, who lives near a beach. While the kids slept in the backseat, Dan and I talked about how relaxing it felt to be by the water for a few days. For years, we’d been saying that we’d like to move near a beach. But it just seemed so impractical. We had built a life elsewhere. A move would be difficult, especially with three little kids.

Finally, one of us said, “You know what? Let’s just do it.”

But we had said this many times before…and then life happened…and we pushed that dream aside. However, this time seemed different. It felt like we were finally serious. Within a few days of getting home, Dan called a realtor about putting our house on the market, and we started to research houses in a town near the beach.

With the wheels actually in motion, my initial excitement turned into nervousness. I had fears — lots of them! We would have to take the girls out of a school that they love. We would be moving farther away from family. We would have to change doctors and dentists. We would have to leave Emmy’s wonderful music therapist. We would have to work with a new school system to arrange physical, occupational, and speech therapy. Overall, we would be leaving everything that was familiar.

One day, when we were scheduled to meet with our realtor, I broached my fears to Dan. “Is this really a good idea? I feel like I know this area so well. I’m nervous about making such a big change.”

He reassured me that everything would work out. And I realized then that if I always listen to my fearful side, I would never do anything. I would stay put exactly as I am.

I actually had a lot of trepidation about starting this blog a year and a half ago. I knew I wanted my blog to be very personal and honest, so I worried about the reaction that I would get. I worried about “putting my business out there” for everyone to see. And, most importantly, I worried about posting pictures of my children.

I really hemmed and hawed on the pictures issue. Should I just take pictures of the kids from behind? Did I really want to expose their faces? What about the creeps out there? The thing that tipped the scales for me was that Williams syndrome can be a very overwhelming and scary diagnosis. I wanted to show newly diagnosed parents what Emmy looks like — how beautiful and sweet she is. I felt like you might be able to get a more accurate impression of who Emmy is from seeing her face. See how Williams syndrome isn’t as scary as it sounds? 🙂

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So I pushed past all of those fears to start this blog, and I’m happy that I did! I love hearing from people who find my blog. I love showing what Williams syndrome is, and I love writing about how Emmy has changed all of our lives for the better.

I didn’t let fear hold me back with the blog, and I wasn’t going to let it hold me back with the move either.

I emailed a realtor who was familiar with a town that we liked and wrote: “We’d like to move, and we’d like to do it quickly. We have three little kids and the holidays are coming up, so we want to just go for it sooner rather than later. Can you help us?” We lucked out, and she was awesome. Soon, all of the pieces fell into place for both the selling and buying of our old and new houses. With momentum on our side, Dan and I moved at warped speed to move before the holidays.

And we did! We’re in the new house in a brand new town near the beach!

We have floor to ceiling boxes, and we still have a ton of unpacking and rearranging to do. But we’re here!!

I think that our biggest concern this whole time was for Charlotte. We were pulling her out of a Kindergarten that she absolutely loves and transferring her to a bigger school with brand new teachers and friends. My own family moved when I was going into sixth grade, and I have to tell you that I was TRAUMATIZED. The memory of the first day of school still haunts me to this day. I can feel my palms getting sweaty just THINKING about it. Ugh. So we felt terrible about changing Charlotte’s comfortable surroundings.

But on the first day in her new school (this past Monday), a little girl brought in a picture frame that she made over the weekend for Charlotte! I couldn’t believe it. Several other kids brought in cards that said things like: “Charlotte — welcome to our school.” Those kind gestures helped her so very much on what would’ve been a difficult first day. I vowed that when I hear there’s a new kid coming to town, I’m going to encourage my children to make cards for him/her. It was really, really sweet.

So the first full week of school is in the books! Charlotte is starting to make friends and is really enjoying her classes, and Emmy fit in right away. Emmy goes to the preschool program and, if you read about the “Williams syndrome personality,” you’ll see why she’s so friendly and outgoing.

So there we go. Lots of changes! But through all of this, I’ve learned that when I move past fear to take a chance, I will eventually embrace change. 

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Little Reminders

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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.

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I Love to See You Laugh

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We were about to walk out the door on our way to school, when Charlotte asked, “Mom, have you ever laughed?”

I froze.

She wasn’t being sarcastic. She was asking me earnestly if I ever laughed. I thought, Wow my child hasn’t seen me laugh in the 5 years she’s been alive?? Something is wrong here.

Her words resonated in my head throughout the day, as I turned her question over and over in my mind. Was I really walking around in a state of misery 24-7? I certainly didn’t feel that way…

Then I realized what she was asking. She wasn’t asking if I was miserable all of the time. She wasn’t asking about my smiles or my chuckles (many of which I give throughout the day). She was asking about the belly laughs.

Can you picture the belly laugh of a child? It is the cutest thing ever! The first thing you notice is the grinning little white teeth and gums. Then you hear the sound of hearty laughter as they throw their head back. And then they often bend over, clutching their sides.

And what makes them laugh like this?

Usually the word “poop.”

That’s all you have to say to a child: “Poopy poop poop.” And you are gifted with the most incredible belly laugh, one that rings in your ears just thinking about it.

At one point in our lives, that belly laugh was instantaneous. As a child, you could access it at a moment’s notice. But as we get older, that belly laugh is tougher to find. Perhaps the things that once made us laugh aren’t funny anymore. Or perhaps there are fewer things to laugh about.

It was 6 months ago that Charlotte asked me if I’ve ever laughed and, ever since, I’ve tried to let that belly laugh back in. I know she sees my smiles and my chuckles. But I want to show her that I can belly laugh too. I want to show her that I’m having fun with life (even if I’m often stressing about many aspects of it…).

I thought back to my own life and two people I love to see belly laugh — my parents. There’s nothing better than my dad getting red in the face and laughing so hard that he cries. I don’t want my parents to worry or stress. I love to see them happy — to see them truly experiencing lighthearted joy.

Some of the most wonderful belly laughs I’ve ever seen came from my grandmother, who we lost in August. She used to say, “I love to laugh!” And it was true. Even in her 80’s, she allowed herself to go to that silly place. She didn’t constantly mull over the hardships of life and say “Woe is me.” Just the opposite. Even when she had cancer, she laughed and laughed and laughed.

I want to make an earnest effort each day to tap into my belly laugh, especially around the kids. I want them to see their mom having fun with life. I don’t want to teach them that life is difficult and grueling and tough. I want them to see the lighthearted side of things.

And something else… I don’t want my kids to lose their ability to access that genuine belly laugh. But if they see that I’ve lost it, why wouldn’t they just follow in my footsteps?

The tricky part is that it’s hard for me to laugh at “Poopy poop poop” jokes. But we’ve started to move out of that territory a little bit. Emmy now puts things on her head at the dinner table, and there’s something very funny about her saying, “Napkin on my head!”

The good news is that my efforts haven’t gone unnoticed! We were in the car yesterday when Charlotte said something silly from the backseat, and I genuinely belly laughed.

Her response?

“I love to see you laugh.”

The Kindness of Others

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Yesterday, as Emmy was working her way down the steps at school, a parent held out her hand.

“Want some help?”

Emmy gladly accepted the hand, and the two of them walked slowly down the steps together. I don’t know this woman. I’ve seen her around, but we hadn’t officially met until yesterday. Yet she saw that Emmy was a bit slower on the steps, and she was eager to extend a hand.

And when I came to pick up Emmy at school the other day, a little girl saw me and said, “Emmy, your mom is here!” But she didn’t stop there. She put a hand on Emmy’s back and gently guided her through the sea of children. This little girl of about four years old led my daughter to me.

Because my daughter has special needs, I see something that others may not see. I see people who show a level of kindness that goes above and beyond what is expected.

Sure, we all say “hi” to each other as we go about the hustle-and-bustle of our daily lives. We offer a quick smile or a wave. We hold the door for each other. We say “Excuse me” and “Oops. I’m sorry.” We’re in our own little worlds. It’s how we live, and it’s what we’re used to.

But now I also see the people who drop everything to help someone with special needs. When that happens, there’s an incredible kindness that comes through. And there’s a softening. Our crisp, sharp world becomes fuzzy around the edges.

As I stood waiting for Emmy to work her way down the steps holding a woman’s hand…

And as I stood waiting for a little girl to guide her though the crowd…

Time stood still. Everything became softer. 

I wonder about people like this. Where does this kindness come from? Do they have a sibling with special needs? Do they work with people who have special needs? Did their parents teach them to be kind to people with special needs? Or are they just born this way?

Before Emmy was diagnosed, I didn’t have this trait. Of course, I was perfectly pleasant towards people with special needs. It’s not like I was cruel or anything. But I didn’t have the stop-everything-and-help trait. I didn’t know anyone with special needs and, actually, I didn’t think much about it. I was very much in my own little world.

I’d say most people are just like I was. They offer Emmy a quick smile. Or they might look quizzically at her, perhaps thinking, “What’s wrong?” Or they don’t even notice her at all.

But then there are these people who stop EVERYTHING and extend a hand. This woman’s own daughter was at the bottom of the stairs already. She could have easily raced down the stairs, offered me a brisk “Hello,” and marched towards her car — already thinking about what to make for dinner. I wouldn’t have faulted her a bit. It’s what everyone does. Hey, I’m busy too, so I get it!

But, rather, she stopped. And she extended a hand.

When I see the kindness come through in children is when it really gets me choked up. When I see kids holding Emmy’s hand to help her along. Or when I see kids try and pick her up to help put her on a tricycle. Or even when kids stop to say, “Hi Emmy!” Those things make her day. And they make mine too. It makes me feel like we’re going positive places in this world. I applaud the parents who are able to teach this kindness to their children. I think it will make them better people, for sure.

I already see how Charlotte has blossomed because of her sister. She is so kind and so helpful. When she takes Emmy’s hand, that softness happens. Just writing about it, I can actually feel it.

People with special needs deserve this kindness. They don’t deserve hurtful words and teasing. I see how Emmy has completely changed my life. Her incredible spirit has softened me. And she has shown me how to really stop and see these little moments of softness in an otherwise fast-paced world.