john deere: leg one

Well, we did it. Ryan finished up in China yesterday and is currently on an airplane from Tokyo to Boston to work from home for a week. And three weeks later, the Layton girls are still alive. I won't go so far as to say we're all alive AND well because Kate has been screaming for the last three hours straight, I'm dripping sweat just sitting in my house {the fans are upstairs with the little ones} and Leah has three carpet burns on her face from falling over during a seizure. But...we are alive. And that's all I asked for. 

Ryan is going to crumble when he sees Kate. She is so much bigger than she was when he left just three weeks ago. She's kind of a tank, stays awake a lot more, cries a lot more, holds her head up a lot more and....SMILES a lot more. Although, about a week and a half ago, I was trying to get her to smile when I said, "Are you just waiting so your dad doesn't miss it?" I kid you not, later that night when we Skyped, she smiled just for him! It was perfect. She smiles lots now. Kind of a lazy looking smile, but I love it. It's hard work to lift those cheeks up!

Leah hasn't changed much other than those huge battle wounds on her face. Awesome. They look much worse now that they've scabbed over.

As for me, not only did I keep myself and two children alive, I also kept the tomato plant alive that Leah planted with her grandparents. I'm pretty sure this is a first. I usually only have plastic plants. 

Now we just have to get through three hours of church...

june in instagram

I'll come right out and say it. I like instagram. I really do. I love that I can connect with friends and family near and far through photographs. I love that it helps me to capture the every day - not a perfectly posed picture - and revel in its simpleness. And I love remembering the simple every days. Usually, they make me smile. So here is June - my simple-every-day version of it, at least.

a rett syndrome roller coaster ride

If I could compare living with Rett syndrome to riding a roller coaster, I think it would be safe to say this past weekend was definitely a loop on the track - the kind of loop that gives you whiplash and makes you feel like you need to throw up a little. Or maybe even a lot.

I've gone back and forth about how I would record the events of the past few days - or if I would even record them at all. I'm trying to balance my own personal need to be honest and record the truth while still trying to maintain a relatively positive outlook. Or at least not make Leah {or myself!} look like a horrendous villain.

Because to sum it up, the past few days were filled with everything I truly and deeply despise about Rett syndrome. As a mother, I have always and will always love Leah with my entire being. But this past weekend, I didn't like her. And that made me so sad.

Then it made me feel downright awful because I realized it wasn't Leah that I didn't like. It wasn't even Leah with Rett syndrome that I didn't like. It was Leah with Rett syndrome who has to take seizure medications that I didn't like. Medications that have to alter her brain so her body won't flip out. Medications that make her dizzy and tired and aggressive and, this weekend, downright mean.

Right now, she just isn't my happy-go-lucky, always lovable Leah. And it breaks my heart.

I won't go into details about what, exactly, went down this weekend because that's just not fair to Leah. But I will say there was a lot of screaming {mostly me}, crying {both of us}, and hitting, kicking, biting and throwing {miss Leah...and maybe I threw one thing}. And I got peed on. Intentionally. By Leah. It was not awesome at all. {As a sidenote: apparently potty seats will break when they are thrown against the wall. Just a tip.} And it definitely wasn't pretty.

Yesterday afternoon, just after an altercation that included blueberries being strewn about my kitchen and living room {those apraxic hands can sure be accurate when they want to be!}, I marched her to her bedroom for a much needed nap. I then strapped Kate into the bjorn and the two of us took multiple laps around the circle in the fresh, damp air. For 45 minutes I walked. I vented to myself. I teared up more than once. I despised passersby for their obviously normal and problem-free lives {which is obviously ridiculous}. I marveled at the beauty of my surroundings. I thought about 20 things all at once. I thought about nothing at all. And I breathed.

When I finished, my problems were still there, but I felt renewed enough to walk back through the front door and try to be human again.

I feel like there has to be a solution. We can't chalk it up to learning to be patient because no one deserves to be treated like garbage just to learn patience. People who come in contact with Leah don't deserve to be whacked in the face by her flailing hands, but Leah doesn't deserve to be secluded just because she is physically unable to control all her body does - and all it doesn't do that she wishes it would.

My thoughts inevitably led me to New Orleans where so many of my friends were gathered this weekend at the 7th World Rett Syndrome Congress hosted by the IRSF. Although I'm not about to complain about the reason I couldn't attend {ahem, Kate}, I would be lying if I said I didn't wish I was there. My heart hurt all weekend as I saw Facebook updates from someone in New Orleans every time I turned on my computer or phone. Or when I saw pictures posted of Rett parents and friends wearing strands of mardi gras beads - the same beads Leah had to wear at all times just a few years ago. The ones she put over her head with her own two working hands.

This weekend, more than most weekends throughout the past 2.5 years, I needed to be in a room with someone who could tell me it will all be okay. Someone who could say they understand. Someone who could offer some sort of advice or buoy me up a bit.

That's when I got a text from Colleen. A text with an audio recording of the closing session of the Congress given by the Chief Scientific Officer of the IRSF, Steve Kaminsky {the one I met in Cape Cod a few weeks ago}. Mr. Kaminsky made a pledge to a room full of parents, doctors, caregivers, teachers and girls with Rett syndrome that our pleas are being heard. Treatments are coming. And he will make sure to find a way to move that research forward as fast as possible.

And then I read a post from Erica summing up her incredible weekend there.

So, although I wasn't physically there, Colleen and Erica were able to send a bit of the conference to me and I couldn't have asked for more. I climbed the stairs to Leah's bedroom and kissed her sleeping cheeks.

Tomorrow is a new day. And although there will still be Rett syndrome tomorrow, we will also be one day closer to a viable treatment. We will be one day closer to a cure. One day closer to getting the real Leah back. My happy-go-lucky, always lovable Leah.

And that makes the roller coaster ride worth it. Whiplash, throw up and all.

amy runs for rett

It's been an interesting journey so far as Leah's mom. For some reason, there's just something about her that seems to bring the best out of people. When others take the time to get to know her - whether it's in person or just virtually - they are often touched. I'm not sure if it's her smile, her twinkling eyes, her blonde locks? But there's just something about her. Oftentimes, friends, family, acquaintances and even strangers will tell me that she has helped them to learn x or reminded them to do y. 

I'm always grateful when others tell me about their experiences with Leah - it definitely buoys me up during the rough days. And every once in awhile someone says or does something that just completely blows me away. 

And Amy did just that. 

Amy and I met back in college and have kept in touch through our blogs. She is the mother or two darling little girls and we often find through pictures and comments that we share a lot of commonalities in style, decor and just plain life. She is a beautiful, positive, happy, productive, loving, talented person and i admire so many things about her.

Amy has never met Leah in person, but has been touched by her nonetheless. I got an email awhile back from Amy informing me that she applied for the lottery to the 2012 NYC Marathon this November...and she got in! But, being the wonderful person she is, she felt like she needed a reason to run. Something to motivate her through the 26.2 miles that will carry her through all five Burroughs - and she chose Leah. 

To quote her, she said, "I can't train that hard and run that far without running for a cause, so I was wondering if I could run for Team Leah Bean. I've been so touched by your experience. Your writing usually leaves me in tears, wishing I could help in some way. It seems that what you're going through is a test of endurance in itself. A marathon, if you will."

Amy wants to run for Leah. For Rett syndrome. For a cure. And I couldn't be more humbled. 

When I read the email, I bawled. And then I read it again. And I bawled again. And again. And again. The idea that someone would endure months of oftentimes torturous training {and she lives in Texas...so it most likely will be torturous} to complete a marathon in honor of my daughter is too much for words. I couldn't be more honored. 

If you'd like to read more about what Amy said about Leah, check it out here. 

If you'd like to help out Amy and Team Leah Bean, you can do so here. 

And you can bet the Layton family will be in central park this November 4th to cheer Amy across the finish line so she and Leah can meet, for the first time, in person. 

today we watched the rain fall

Today we sat on the porch and watch the rain pour down all around us. We listened to the thunder and oohed and aahed at the lightning. And we bundled up close as the cool breeze and the clean, crisp smell of rain surrounded us. Because that's exactly what Ryan would be doing if he were home. 

We can't break tradition. 

Good news, Ryan: Kate is a fan.

H-O-T

New England had a heat wave this past week. There were a few nearly unbearable days. The nearly 100 degree heat + humidity + no A/C = a very grumpy maren, leah and kate. It was kind of miserable. 

We kept the shades down all day long, tried to {unsuccessfully} cool off with pools and and lakes and sprinklers and kept four fans running night and day. 

The first night I tried to put Leah to bed, but she was just miserable. Not only was it hot, but she can't maneuver her body to get the sheets right or wipe dripping sweat off her face or any of that fun stuff. Needless to say she didn't fall asleep. 

Finally by about 11:00pm it had cooled down a tiny bit downstairs where Kate and I were hanging out. Although the thermostat still looked like this. 

 

Yes. Ninety degrees. Inside my house. At 11:00 at night. 

I went to retrieve a crying Leah and decided to have a sleepover on the blow-up mattress in the front room. I figured that rather than trying to divide and conquer, we could corral every cooling apparatus in the house and focus on one room. The outside temperature wasn't cool, but it was finally cooler than the sauna it was inside, so I put a fan up in the window and pulled the mattress to the front room. The second I put Leah on it, she smiled a deliriously sleepy smile and rolled right over to go to sleep.

It wasn't the most comfortable night of sleep for me, but Leah slept soundly until about 6am and Kate seemed comfy enough sleeping in her birthday suit in the bouncer. 

And we lived to tell the tale. 

Barely.  

sunshine and love

My sister must have a sixth sense to know how I'm feeling and exactly when I might need a pick-me-up. And it must be so good that she knows a few days in advance so she has enough time to head to the store, fill up a box full of sunshine {yellow} and love {red} and ship it 2,700 miles so it's sitting on my front porch at exactly the right time. 

She's good. 

And we needed it today. 

Thank you just doesn't seem to suffice.

p.s. LOVE the paper chain counting down the days until the Mr. is home sweet home.

dear dad: a poem from l and k

Dear Dad, 

We think you're rad. 

We like it when you kiss our cheeks.

And cannot wait for two more weeks. 

We'll celebrate when you get home. 

Until then, we like talking to you on the phone.

We couldn't have asked for a better pop. 

We hope your zerbits will never stop. 

We love the nicknames you make for us. 

And how you calm us when we fuss.

We love that you've learned to do our hair. 

Your tickling skills are beyond compare. 

You are the very, very best. 

Really, there is just no contest. 

Happy Father's day from us to you. 

We really love you. Yes we do. 

Love, 

Leah and Kate

North Hartford Lake

My goal this summer was to do something every day to pass the time. It could be as simple as taking a stroll to the garbage can or playing in the field, or something more elaborate like heading to the community pool or bowling. 

I just knew that if I wanted to stay sane we would have to get out every day. Luckily, I have some good friends and neighbors who are great about letting us know when they are heading out to do fun things and we get to tag along. We've been to a local u-pick farm to pick strawberries {and plan to go back a few more times for more strawberries, blueberries and raspberries as the season progresses}. We've run through sprinklers and played in pools. And yes, we have taken long walks to the garbage can and back. 

But I think my favorite outing so far was to North Hartland Lake. It's a quiet little lake created by a dam in a town about 20 minutes away. And, I kid you not, they weren't even charging their $1/adult fare yet because the grass hadn't grown in sufficiently. It was the perfect way to pass a perfectly sunny afternoon. A big thanks to Andrea for letting us borrow her roomier car, Michelle for driving and Juliann for being so smart. 

 leah, juliann, adam and claire

 cute ian {a fav of mine - and leah's - from her preschool class}

 brixton and his sneaky smile

 kate and claire {who happened to be celebrating her 8th birthday that very day!}

 don't mind the tan burn line. apparently it was warmer than we thought when we took a two hour walk the day before.

 someone found her thumb!

 ...and tried her best to smile!

love these ladies.

sachem bear

We live in a quaint, quiet little neighborhood - a graduate student village for Dartmouth college. Things are quiet here. People are friendly. And for the most part, life is pretty predictable.

But this spring, Sachem {pronounced "say-chum"} Village got a little visitor.

Well, one big visitor and three little ones, to be more clear. 

At first, I just heard rumors. Then the pictures started to surface. But I live on the inner circle. My house doesn't back up to the woods like many of the units do, and the bears only came to the homes near the woods so we were safe. 

That's when I heard Ryan say the bear was right outside out house. He grabbed the camera and disappeared. 

Don't worry. He didn't disappear for good. He's not that stupid. But he did snap some great pics from a good distance. Including this gem of Sachem Bear herself chomping on some trash in the foliage 20 feet from our house {and NO, it was not our garbage}. 

He {and plenty of others} then followed her down the corridor and across the street until she eventually disappeared back into the woods. I opted to stay inside, thankyouverymuch. According to the New Hampshire Fish and Game Department, the last time someone in New Hampshire was killed by a black bear was clear back in 1784, but I wasn't about to be the one to change that statistic. 

We got a friendly email reminding residents to take their trash immediately to the gated dumpster and not leave it on their porch or outside of their units. And also that it was important to clean BBQ grills of any food/residue and to take down any bird or other animal feeders. If we would do these things, the bears would have no reason to come back. 

But not everyone did these things, and so the bears kept coming back.

It wasn't long before the Sachem Bear became the most popular kid on the block. Literally, on our block. She even got a Facebook page. And posted helpful pictures of herself showing tenants exactly how to dispose of their garbage. 

Her tutorials must have worked because a few days later, no one saw the bears - that was Memorial Day weekend. They were gone, and so far, they haven't returned.

Although I'm not sad to see them go, I will say it was kind of an adventure. Just one more thing I didn't have on my list of things that would happen while here. I'm constantly being surprised.

ktg: one month

Kate the great is growing, growing, growing right before my eyes. It's been a big month for her. She did a few fluke roll-overs and a few fluke smiles, but nothing sure and steady yet. 

She busted through 170 diapers since bringing her home {plus about 30 in the hospital}. 

Her longest stretch of sleeping was 6.5 hours. And she slept 6 hours a few times. I'll take it! 

She eats about every four hours and is ridiculously fast. Like 10 minutes fast {Leah took upwards of 40 minutes for each feeding, so it's weird to get used to!}.

She is sweet as can be, but definitely likes to be held and noticed much more than her big sister did. She quickly rejected the binkie type we used with Leah - apparently she's more traditional. She can definitely keep it in, but spits it right out {sometimes with good distance} when she's done. 

Her one month checkup was a family affair. Big sister had to show her the ropes and assure her there was nothing to be worried about since shots don't come until two months.

And, at one month, she: 

 weighs 10 lbs. 9 oz. {80th%} 

and is 

22 inches long {77th%}. 

We love our chunky Kater-tot.

p.s. For inquiring minds: yes, we will be getting her tested for Rett syndrome. Just not for a few more months.

mom

One of the hardest things about living far away from family is...living far away from family. I know that sounds ridiculous, but it's just that simple. Ryan and I don't ever regret or second guess our decisions that have led us to where we are, but we have definitely missed out on some quality family time in the process. California seemed far away, but it was just a day's drive or a quick 1.5 hour flight to get to our family if we really needed to.

New England seems to be an entirely different story. 

So when my mom purchased tickets back in February to come out and visit us after Kate was born, you would be accurate to say I was counting down the days. 

She stayed for a week - including the transition time for a couple days after Ryan left. She baked and bowled. 

She cooked and cuddled. 

She danced and discovered. 

She taste tested and toured. 

She didn't complain when there was barely any room for her in the car due to larry's small stature.

And, of course, she sewed {pic of that when my part of the project is complete}.

And then just like that, she was gone. 

It's been wonderful to share my journey becoming a mother during the past five years with my own mother. To see the love she has for my own girls and the lengths she goes to to understand and learn more about Leah. To show her more about where we spend our days and nights and what our world is like. We enjoyed every second of her visit and hope she comes back soon.

kateapotamus's dad

Ryan is and will forever be the master of nick names. He has a nick name for everyone and everything. Some make logical sense. Some...don't. And if you know Ryan personally, he probably has a nick name for you. 

Ryan's list of nick names for me is about a mile long. His list for Leah is even longer. And his list for Kate is just beginning. The first being Kateapotamus. You know like Kate and hippopotamus put together. Makes sense, right? 

Well, it stuck. And that is what we call her.

So, without further ado, I present you with a smattering of pictures of miss Kateapotamus herself...and her doting dad. 

 {yup. that's him studying for finals in the hospital room. 

he deserved...and needed...every drop of that coke}

 

Ryan was a true hero in the hours, days and weeks after Kate's birth. He juggled his former fatherly duties, his new fatherly duties, his husbandly duties and his student duties like it was nobody's business. He cradled, cuddled, cleaned, chauffeured and carried. And he did it all without complaining. Today was day #3 without him around and I can already assure you the Layton female trio is missing him tremendously. But three cheers {one from each of us, of course} for an incredibly hardworking husband and father with lofty aspirations set solely to support his girls.