Tomorrow is the Day

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

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

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

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

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

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

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

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

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

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Here We Go

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

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

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

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

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

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

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

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

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

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

So here we go…

A Story About Sisters

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Charlotte wrote a “How To” story in school. The topic she chose was “How to Help Your Sister.” For her dedication in the beginning, she wrote, “I dedicate this book to Mommy because my Mommy taught me how to help my sister.” She wrote about helping her sister down the stairs, helping her get dressed, and helping her brush her hair.

My first thought was: This is the sweetest thing I have ever seen in the history of the world!

My second thought was: Have I put too much of a burden on Charlotte?

I felt the #1 Mom feeling, which is guilt. Am I not doing this right? My original intent was that I didn’t want Charlotte to feel like she always has to help Emmy because I didn’t want her to resent her sister later in life. (Though someone commented on my blog once that she, as an adult, loves helping her sister with Williams syndrome and that she would do anything for her.)

I just don’t want Charlotte to look back on her life and say, “You know, my mom really screwed things up because she made me help my sister too much, and now I have the following issues…”

But then I thought…

Wait a minute. I helped my own sister! I was always looking out for her. I’m sure my sister felt like she had 3 parents because I was always putting my nose into everything. I remember being in a grocery store with my mom and my sister and, while my mom put in her order at the deli counter, I would chase my sister around the grocery store and call back over my shoulder, “You need to watch her!!” Of course, my mom had an eye on her the whole time, but she found it hilarious that I played the role of guardian (while chastising her for it…).

My sister and I recently found some old videotapes of my 13th birthday party, and we had so much fun laughing at ourselves. The grainy footage showed the party in my house with music blasting. Our living room was crowded with friends and even a boy that I liked. But while I was surrounded by people my own age, I danced with my 7 year old sister for hours. There we were in the middle of the circle–spinning around and laughing. We both commented on it. “Wow, I basically ignored everyone else and spent the party with you!”

Growing up, I included my sister in everything. “This is my little sister!” I would call out to anyone who would listen. I always had a protective arm around her, and I loved doling out advice. When I finally got my driver’s license, we continued to spend all of our free time together–out and about. And when I got to college, I brought my little sister to parties and watched her like a hawk (reminiscent of days in the grocery store as kids).

I don’t remember if I helped her down stairs or if I brushed her hair, like Charlotte does with Emmy. But I know that I’ve helped my sister in other ways–just as she has helped me. It’s always been a give and take. (My little sister has even called a boy on my behalf, to ask him to a dance. I was 15 and she was 9. At the time, my shyness was beyond embarrassing. Now, I can laugh about it.)

With Charlotte and Emmy, I see that give and take. Some of Emmy’s greatest strengths come from her reliable company. If Charlotte needs a hug, Emmy is right there. When Charlotte needs a laugh, Emmy is happy to provide it. When we moved to a new town a few months ago and didn’t know anybody, Emmy stepped into the role of “steadfast companion” to Charlotte. They spent all of their free time together.

The other day, I found one of Emmy’s books in Charlotte’s room. I asked, “Did Emmy leave this here?” and Charlotte responded by filling me in on their morning routine.

Every morning, Emmy wakes up first. She grabs a book from her nightstand and walks over to Charlotte’s room. She knocks softly on the door and enters. Charlotte is still in bed–sometimes sleeping. The two girls don’t say a word. Emmy sits on the floor of Charlotte’s room with her book and leafs through it, waiting for her sister to get out of bed.

I said, “You guys don’t talk at all?”

Charlotte replied, “No. She just likes to be in here with me.”

Their bond is strong. There’s a give and take. For now, I think it’s equal. What role Charlotte will take on in the future remains to be seen. I don’t want her to feel burdened, and I don’t want her to resent her sister. But for everything I’ve done for my sister and for all the times I’ve been there for her, I feel zero burden or resentment. Yes, the circumstances are different. But from what I see in Charlotte and Emmy, that special bond is exactly the same.

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The Time That I Freaked Out

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It’s very bizarre to fill out medical paperwork on behalf of Emmy. Since we moved a couple months ago, we’ve entered a new school system, and we’ve had to find new doctors and dentists. We’ve also signed up for extracurricular activities, like gymnastics. This all comes with a lot of paperwork…and a lot of questions.

First, the questions ask for me to go through her health history. Gosh, this is still tough for me. I have trouble rehashing her heart surgery in 2013 followed by 2 cardiac arrests and a week on life support. She also has a lasting problem from that event, which makes me sad to think about. And then, of course, there’s the fact that she has a genetic condition. And, while I’ve completely accepted and embraced the fact that she has Williams syndrome, sometimes just thinking about that first year can bring back memories of complete uncertainty, confusion, stress, and exhaustion. Trying to grasp what Williams syndrome meant for our child along with setting up doctors’ appointments alongside Early Intervention services was just EXHAUSTING.

Next, after filling out her health history, I’ll no doubt see the following question which is phrased in many ways but most commonly: “Is your child healthy?”

I don’t even know how to answer this question. I mean, yes, Emmy has both Williams syndrome and a lasting issue from her cardiac arrests. But she certainly SEEMS healthy. She smiles a lot, runs around all day, expresses her MANY opinions loudly, and pushes herself in everything she does.

I don’t even know how to define “healthy” when it comes to Emmy. On a day to day basis, she seems healthy to me, even after everything we’ve been through.

Then we’ll have moments that will make me positively freak out.

A few days ago, Emmy ate some mango (her favorite food). Then a couple hours later, she said, “Mommy, I need some help.” I looked over, and she was practically green. She then threw up twice.

And I got nervous. I’ll tell you why… When we were in the hospital after her heart surgery, one of the nurses told me that when something is wrong with the heart, it often presents itself in the stomach first. So vomiting could be a sign of a heart problem.

I tried to put that thought out of my mind and deal with Emmy’s situation as if it were just a stomach bug. I did all the usual things that I do with stomach bugs–cleaned her up, gave her some water; tucked her in bed for a bit. But she wouldn’t settle. I brought her downstairs and sat with her on my lap, as she clung to me. She was acting differently. She could barely sit up. She kept saying, “Mommy, I’m scared.”

All this after throwing up only twice??

She seemed to be getting worse quickly. She was practically limp in my arms, and then her eyes rolled back for a second.

And that was it. My mind took off racing. What if it is her heart? That was all I needed. Without another thought, I grabbed my purse and put her in the car. She didn’t even have shoes on! I ran back in to get her shoes and then hopped behind the driver’s seat. I turned around to look at her again. Am I overreacting??

“Emmy, are you ok? Should I take you to the hospital, or do you want to go back inside?”

She said weakly, “I want to go to hospital.”

Done. I frantically drove to the hospital, peeking back to check on her along the way. She looked like she was going to pass out. Her eyes were closing, and her head was hanging down. I tried talking to her, but she would only answer in a slight whisper.

“YOU OK, EMMY?? ARE YOU EXCITED ABOUT YOUR BIRTHDAY COMING UP???” I was trying to get her interested in something–anything!

When we got to the ER, I breathed a huge sigh of relief. At last, we were safe. Someone was going to help us.

I practically ran her inside, and rattled off her health history. Emmy seemed to perk up when she noticed the tvs. And then she perked up even more when they brought her some Batman stickers. And then she REALLY perked up when they brought her an ice pop.

And all of a sudden, the child who completely scared the heck out of me an hour prior was sitting up in the hospital bed, happily watching Monsters Inc., eating her ice pop, and chatting up the hospital staff. She looked great. And then the attention started to turn to mom…

“So, mom, did you call the pediatrician?”

Nooooo.

“You didn’t call the pediatrician?”

Noooooooooooo. Honestly, it didn’t even cross my mind to call the pediatrician. After what we’ve been through medically with Emmy, I didn’t want to waste a precious second. In the past, I’ve seen her situation change in, literally, a heartbeat. She’s gone from “ok” to “clinging to life” in the space of a few seconds. The doctors will remind me that it was different back then. She was post-surgery. That was 2 whole years ago. But after living through that…after witnessing what happened to her…I can’t just forget. When I see her start to fade on me, my mind goes back there in a split second, and I freak out.

I think the staff in the ER thought I was a little bonkers. My child threw up twice, and I brought her to the ER. That’s all it takes, apparently, for Mom to freak out. I was told that she’s a healthy child, and I should treat her just like any other. And if she vomits, I shouldn’t worry about her heart.

So it seems the answer is, yes, she’s healthy.

But, seriously, telling me not to worry is like telling someone else to stop breathing. Worrying is what I DO. And I’m quite good at it! I’ve actually perfected it, thank you very much. 🙂

But here’s the deal… I wouldn’t be able to live with myself if there were something seriously wrong with Emmy and I brushed it off as nothing. When I feel like she’s giving me signs, it’s impossible to ignore them. I’ve witnessed things changing in an instant. I know the circumstances were different, and that was all 2 years ago. I know she was post-surgery. But after living through that, I can’t forget it.

So, yes, we may be back to the ER one day, and Emmy may get a repeat of Monsters Inc. and an ice pop. But next time, I’ll call our pediatrician on the way over…

Mrs. Personality

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When I picked Emmy up from gymnastics’ class yesterday, the teacher said, “She has such a great personality. You can’t help but smile around her.”

This is so true.

Emmy wakes up in the morning with a smile on her face and usually says something sweet like “I love toast with jelly!” or “I can’t wait to see Miss J!” (one of her therapists, whom she adores).

Her Speech therapist wrote the following in her journal: “When we finished our crayon box today, Emmy said, ‘I am so, so happy we finished it!’ It was so cute.”

The other day, she made a beeline for her teacher before school and gave her a hug, to which the teacher responded happily, “Hi Emmy! I got my morning hug!”

She’s already started getting report cards from preschool, and the comments make me smile: “Emmy always comes into the therapy room excited and ready to work.”

This has been the gift of Williams syndrome.

I sometimes wonder what she would be like if she didn’t have Williams syndrome. Would she be anywhere near this positive — this smiley? I also wonder if her interests would be different. Right now, she is really into anything that has to do with Halloween (ghosts, monsters, vampires), and she’s into superheroes (particularly Superman). She says in a wavering voice with a sly smile, “I want a spooooooky book.” And she loves the thrill of a “scaaaaary” story.

At this age, Charlotte was dressing as a princess every day. I wonder if Emmy’s interests have anything to do with her diagnosis, or if she would’ve been into monsters and Superman regardless? I’ve seen plenty of kids with WS dress as princesses…

I think about how much of her personality comes from WS, how much of it comes from Emmy, and how much of it comes from our family…

I see that her sense of humor is really starting to come through. And I think…it that us or is that Williams syndrome? Is that my dry sense of humor, or is it Williams syndrome?

People might say, “Why even think about it? It doesn’t matter now because this is who she is!”

The thing about me is that I can’t help but think about it. Curiosity gets the better of me…

From the moment our children are born, isn’t that what we do? “Are those daddy’s eyes or mommy’s?” “She gets her serious side from you…” “Oh look! She’s into crafting! Just like mommy!” “Aww! She has a dimple like daddy!”

Because I’m somebody who likes to organize and who, instinctively, puts things into nice little piles — whether in my mind or on my shelves — I think about Emmy’s traits. Will anything ever be obviously *me*? Will I ever say, “She totally got that from me!” Or will all her traits belong — in a sense — to Williams syndrome?

The truth is that I don’t know who she would’ve been without Williams syndrome. So, of course, it’s a pointless exercise in my mind — one that just raises more questions than answers. But, like I said, I can’t help it…

Regardless of its origin, her awesome personality makes her endearing, and it will serve her well in life. I just love that she’s up for anything. I could say, “Hey, Emmy, you feel like going grocery shopping?” And she’ll clap her hands and say, “Ohh I just love grocery shopping!”

Or my favorite — we went out for sushi the other night, and I ordered a spider roll.

Emmy chimed in joyfully, “I love spiders!!”

You can’t help but smile around her.

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Why Words Matter

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I don’t read baby books anymore. With Charlotte, my first born, I read them diligently. I wanted to know when she would be rolling over, standing, and saying her first words. I didn’t really worry about her meeting those milestones, but I wanted to know what was in store for us. When we found out that Emmy has special needs and then when she started missing her milestones, I couldn’t bear to read the books because they served as constant reminders of the things she wasn’t doing yet.

And, often, it wasn’t so much what they were saying as how they were saying it. I would see gentle reminders that some babies just develop later than others, accompanied by words like “Your baby may be normal!” There were reassurances that even if your baby wasn’t meeting milestones, things would most likely be ok. There were broad ranges for milestones and, as long as your baby fell into those ranges, everything would be fine.

But what if your baby didn’t fall into those ranges?

Then I would see words like “Talk to your pediatrician” or “Contact a doctor.”

So everything seemed happy and cheery when your kid was meeting milestones but, if not, you knew that there was bad news lurking around the corner.

There were two camps. The children that were developing “normally” (this word is used all the time) and the children that weren’t. If you were in the first group, the implication was that things were going swimmingly well! But if you fell into the second group, it sounded like things in your life were about to get pretty miserable.

But I have to say that even though Emmy didn’t meet all of her milestones, our life is far from miserable! She is an absolute joy to be around — milestones be damned. No, she didn’t fall into the “normal” (I hate that word) charts, but she has enriched our lives beyond belief. I could gush about her all day but, to sum it up in a word, she’s awesome.

So now I have an almost-10 month old baby, Theo, and I haven’t opened a baby book.

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After years of physical therapy sessions with Emmy, I know a lot about how children develop — more than I ever dreamed I would know. So I have many of the milestones filed away in my mind and, while I don’t obsess over them, I am aware of them. Theo is on schedule, but I still ended up breaking my rule and did a Google search to find out whether standing comes before or after crawling. And that lead me to a page about walking. And here is what I found:

“Most babies take their first steps sometime between 9 and 12 months and are walking well by the time they’re 14 or 15 months old. Don’t worry if your child takes a little longer, though. Some perfectly normal children don’t walk until they’re 16 or 17 months old.” (Baby Center)

“Some perfectly normal children…”

Isn’t it funny that I haven’t looked in a baby book FOREVER — for this reason alone — and then, on my first search about milestones, these are the words I find?

Why are we calling children “perfectly normal”? And for that matter, what about the children who aren’t deemed “perfectly normal”? What about them?

And then, on the next page, the inevitable dismal line:

“Don’t fret if your child is simply taking her time. But if your child doesn’t stand with support at 12 months, can’t walk at 18 months, or isn’t able to walk steadily at the age of 2 years, bring it up with her doctor.” (Baby Center)

Can’t you just hear the threatening music? So now we know that if things don’t happen by a certain timetable, something scary may be lurking around the corner…

Well, what was lurking around our corner was Williams syndrome! And it hasn’t been bad at all! Her beautiful smile is a Williams syndrome smile, and it lights up our lives every day.

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But, beyond all of that, let’s revisit the words “perfectly normal,” and let’s look at them in terms of a child who is typical.

The first word, “perfect,” is a heavy word. We throw it around a lot, but it is heavy. When you strive for perfection, you will always fail — every, single time. Nobody is perfect. Perfectionists always feel like they’re doing something wrong because, until they’re *absolutely perfect*, nothing is ever right. And because they can never achieve the status of *absolutely perfect*, they end up constantly unsatisfied. So a perfectionist, like myself, is often caught in a trap of inevitable failure. Cheerful, huh? 🙂

Perfectionism can be debilitating. It stops you from doing tasks. If I don’t have time to arrange everything on a shelf perfectly, I won’t even put one thing on the shelf. I had to ask my husband to unpack my boxes (we just moved) and put things on the shelves anywhere he wanted because my desire to have things just so was getting in my own way.

I REALLY try not to use the word “perfect” — especially around kids. However, it’s a word that often pops into my mind. If Charlotte carefully writes her name at the top of her paper, it certainly looks perfect to me! But I don’t want to put that on her. So I choose another word. Or if Emmy puts on her socks the right way, it certainly looks perfect to me! But, again, I pick another word.

And after the word, “perfect,” we have another favorite of mine — “normal.” Someone once said that “normal is a setting on the washing machine.”

What’s the opposite of normal? It’s abnormal. Do we really want to call a child abnormal?

I like to use the word “typical.” As in, “typically children develop like this.” But if they don’t, that’s totally ok too. Everyone is different. That’s what makes life interesting.

I feel like there’s a lot of fear around milestones. You’re either developing “perfectly normally,” or all hell is breaking loose. There’s no grey area. I want to share that, in our case, things went as far from “perfectly normal” as you can get. We are all the way at the other end of “perfectly normal.” But I want to let you know that things over here are pretty great too! In fact, they’re magnificent. 🙂

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Two Year Blogiversary

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

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

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

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

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

Charlotte has turned into an artist:

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

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

And Theo is into everything!

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

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