now we know...

Dear little Leah, 

This morning my fears were confirmed: you were officially diagnosed with Rett Syndrome. Simply speaking, Rett Syndrome is a severe genetic disorder that affects the way your little brain is developing. You developed normally (or what appears to be so) until about 18-20 months, but your progress has slowed – and reversed – since that time. 

Many other girls with RS have problems using their hands, speaking, walking, chewing and possibly even breathing. There is no cure (yet!) for Rett, but there are things we can do to help you feel better. 

You have great teachers at school. In fact, your teacher, Jan, is the one who mentioned Rett Syndrome in the first place. She did a lot of research before she decided to talk to us about it because she wanted to be certain before she made us worry. And, although it did make us worry (and still does), we are so grateful that she took the time to really try to figure out what was ailing you. Her aides Patty and Helen are equally as wonderful. You have an amazing speech therapist, Asha, to whom you have really taken a liking. She is willing to try all sorts of things to help you communicate and doesn’t get frustrated when something doesn’t work like she thought it might. Marian is your physical therapist and she also works very hard at trying to make you more comfortable and more successful in your movements. Right now you sometimes wear a weighted vest and we’re trying out a compression suit this week (which, by the way, you look very cute in). 

You make repetitive, purposeless movements with your hands, but we’re hoping if we can keep that under control a little bit, purposeful movements can be more common. You are pretty good at using your spoon, you know. 

You don’t sleep very much. That means your dad and I don’t sleep very much. Hopefully we’ll get that back in order sooner rather than later. We wouldn’t mind if you’d just keep it to yourself, but it seems like you’re in pain and you let us know! We think your tummy hurts, so we’ll try to get that feeling better soon too. Since we live in an apartment with people living below us, we have to get you quiet pretty quickly. We’ve spent many a night lately watching videos with you (Signing Time, Clifford, Abby Cadabby and Backyardigans are some of your favorites), going on drives with you, sleeping in the car with you and just trying to cuddle you. 

As of last week, you lost all of your words. I think I remember hearing you say “please” and “oh no” last Friday, but I haven’t heard anything other than grunting since. This makes mommy really sad, but I need to remind myself that just because you can’t speak, doesn’t mean you can’t communicate. We just have to figure something else out. 

I could go into lots more detail, but more than anything I just want you to know that you’re still my little Leah. I love you just as much today (okay, maybe even more!) as I did before. I’m going to try my best to be patient with you and understand how you learn and grow. Can you do the same for me? I’m new at this too. But I love you. Lots of people love you. Always remember that. 

Love, Mommy

christmas card letter

i'm mulling over ideas for our christmas card letter this year. what do you think about this one?:
dear 2009,

thanks for dropping by, but you've overstayed your welcome. it was thoughtful of you to bring us so many great gifts this year (little miss leah walking as #1!!!), but we really don't appreciate blood clots, cancer, disorders, migraines and bags underneath our eyes. maybe you could pass along the message to 2010?

best wishes,

the layton family

p.s. if she asks, 2010 could possibly bring some light at the end of the tunnel. thanks!

paiting the town...green

i did it. i finally did it. i painted a wall. and not just white. i painted it a COLOR. i know, you're thinking, "so what? big deal? everyone paints walls." but, you're wrong. not everyone does. my mom and step-dad definitely don't, nor do ryan's parents. and, neither do lots of apartment dwellers for fear of management smack down. so i have never ever lived anywhere with a painted wall! but, since we're not afraid of our managers anymore (mwa ha ha...)...we took the plunge. um, actually...i took the plunge...when ryan was out of town. i sacrificed a night of sleep because leah was in my room in a pack and play and i was on the living room floor {okay, not really...i actually love sleeping on the floor}. it wasn't a perfect match, but it works. thanks to the all-talented sarah for sharing her mad rolling skills. we busted it out in 45 minutes.

p.s. you might get a real after picture (with no blue tape) once i hang something on that wall. i'm toying with some different ideas right now. i'm thinking about showcasing some of leah's amazing artwork from school. just not quite sure how to do it yet.

gone fishin'

we're starting a new fashion trend here, so pay attention: fishing vests are IN. you heard it first here.

leah is a bit wobbly on her feet, so we're trying out this little vest to weigh her down some. it seems to help a little to keep her from going back and forth so much to balance. it's a little fishing vest and you can add fish for more weight. kind of funny. fyi: it's amazing what just a few pounds can do! that girl is heavy!

lemos farm

At the beginning of October, we went to a fun little farm on the way to Half Moon Bay with our mother's group. We got there early and pretty much had the farm to ourselves to ride the train, see the animals and pick out pumpkins. We even pretended it was fall and wore our jackets. Ah, we can imagine, right?

next time i'll send her with a spare outfit...

Leah owes Rachel an apology. But since she can't talk, I guess I have to do the apologizing for her. The down-on-my-knees-kissing-Rachel's-feet kind of apology. Really, I don't have words for what Rachel did for Leah today, but I want to get this recorded, so I'll do my best.

Every Thursday, Rachel watches Leah while I teach piano. Every week, I drop Leah off with a little bag of her "necessities." You know, a diaper, some wipes, a sippy cup, a snack. Every week, Rachel hands back the bag with everything in it, usually untouched. I've thought about sending her with an extra outfit, but she's never needed one before.

Today, Leah was returned to me wearing some of Ty's dinosaur jammies. I'll give you one guess as to why. Yup. You're right.

Leah is famous for sticking her hands down her pants before and after she has gone to the bathroom. Rachel knows this...and so she checked her. Twice. Thirty seconds after she checked Leah for the second time, a man at the park came up to Rachel and said, "Is that your daughter?", pointing to Leah.

And there it was. Everywhere. On her clothes. On her hands. On her face. In her hair. I'd like to say it wasn't in her mouth, but really, I know the odds are against me on that one.

Poor Rachel. She's at the park. With three kids. No one had wipes. No one had an extra diaper. So, she trudges home with three kids, plops Leah in the tub and makes her shiny and new.

When she dropped off Leah, Rachel apologized! As if she could have somehow foreseen that little Leah was going to explode in her pants, then proceed to wipe it all over herself. Rachel got extra brownie points in heaven today for what she had to go though.

And this was Rach's parting comment as she dropped off Leah: "Look! She's so happy. I bet she feels so much better. It was really big. I'd guess she won't have to do that again for another week, at least. Probably two weeks."

Poor Rachel. Oh how I hope she's right.

{and just look at her...she truly was a delight tonight. so happy.}

today

Today I turned 28. It was a good day. Birthdays usually are. But today was a really good day. I felt loved by so many people and took time to smile at some small things.

Today I twirled and danced with Leah instead of being annoyed that she wanted some of my attention.

Today I cried in front of a friend realizing the reality of something in my life rather than bottling it up and trying to look put together.

Today I gave my husband a break and didn't mind at all that it means more work for me. I'm truly happy that he gets a few days to be rejuvenated.

Today I cleaned my bedroom.

Today I ate two desserts and didn't even care.

Today I thought about past birthdays: simple nights in with the Augers, my mom's ever-creative cakes (and non-cakes), parties with 16 nine year olds, shopping trips to the mall in the rain, dinner at TGIFridays with my mom - being so embarrassed that the waiter wanted to put a balloon in my hair, home on my 16th babysitting my sister while my friends when on UEA vacations and my mom was in Hawaii; my first birthday away from home; parties with roommates; leaves in the canyons.

Today I thought about past gifts: my first-ever razor (and being terrified to use it because Jenni told me I could gash my leg open); a sweet, sweet book about life...and death...from my aunt just a month after my dad passed away; an iPod from Ryan that has given me that extra bit of strength I didn't know was in me while running; a used Garfield book from my brother, Dan; adjustable roller skates to go cruising through the Auger's kitchen, a coupon for a free room cleaning from my sister; telling my mom we were expecting a baby on my birthday three years ago; cards from Leah; sweet messages from family and friends.

Today I thought about the past year and how I've grown as a person. I still have a lot to learn, but I feel I'm a little more honest with myself. I'm a little more open with others. I'm better at sharing my feelings.

I know it's okay to say 'no'.

I have a better idea of what really matters in life and what can wait until tomorrow. It's okay to cry. It's even better to laugh - especially at myself. I'll live if I don't wear makeup or do my hair - even if I'm going to see people during the day. It's fun to dance like a maniac even if people are watching. I'm more willing to try new, hard or unknown things. It's okay to fail sometimes - it will help you appreciate success. I have more strength than I usually give myself credit for. I'm not supposed to do things all on my own. It's good to be busy, but it's also okay to do nothing once in awhile. I've learned more as a mother than I ever thought there was to know...and I know it won't stop.

I have great friends. I have an excellent family. I have an incredible husband. I have an amazing little girl. I'm not such a bad person myself, but I'm my best self when I'm not worrying so much about me, but thinking about others.

I've learned that Heavenly Father does hear our prayers. Even though there have been multiple times this year when I've felt forgotten, he'll send me simple reminders to show me I'm definitely not.

I think 28 is going to be a good one. I can just feel it.

happy biiiiiiiiiiiiiiiiiiiiiiirthday to me....

the big #28. you know the drill. i just can't resist a birthday wish. :)

i love october

that's all. i just love it.i love the deep, rich colors. i love the spicy smells. i love the warm jackets.

i love the anticipation of coming months. i love my birthday. i just love october.

september...