today i am grateful for leah.hopefully everyone already knows this.
i'm grateful she has made me love someone in a way i never knew was possible.
i'm grateful she has helped me be more patient. more understanding. more nurturing.
i'm grateful she has helped me to slow down {sometimes} and enjoy smaller things in life. to see things as i'm sure i used to see them, and then somehow forgot. to relax and play. to not always worry about messes...and even have fun with them.
i'm grateful she's my little helper. she goes almost everywhere with me. she does almost everything with me.
i'm grateful for her laugh. her smile. her curls. her eyes. her chubby cheeks. her roly-poly legs. her six-pack abs. her ticklish tummy. her bum cheeks. her sense of humor. her love of books. her curiosity. her teasing. her wobbly run.
i'm grateful she was strong enough and brave enough before she even came here to sign up for all of her challenges. and i'm grateful she trusted me enough to take care of her while she is here.
i'm grateful she has helped me remember to fall on my knees to pray each morning and each night...and usually many times in between.
i'm grateful for the ups...and downs...even though i much prefer the ups.
i'm grateful she forgets when i make a mistake. or when i'm not as nice or as patient as i should be.
i'm grateful for her hugs and kisses. and i'm grateful she said, "ma ma" today, even if she wasn't saying it to me. i needed that.
yesterday was a first for all of us. on tuesday, you had your first {and hopefully your last} mri. because you're only two and not many two year olds can sit completely and perfectly still for an hour, the doctors and nurses had to put you under general anesthesia.
that's a scary thing.
but you did an amazing job.
first of all, three cheers for making it through the morning before all this mri business even started. i'm not sure whose idea it was to make a two year old get an mri at 2:00pm, but i'm pretty sure they never consulted anyone with a toddler first. we were under strict instructions to feed you only clear liquids {plain jell-o was also permitted} until 11am and then stop feeding you completely. have they met you? you follow in my footsteps: you love to eat. it was painful for me to not feed you for that long. i decided to not eat as well just so i could feel your pain. you're welcome. because the mri was at 2pm, we had to be at the hospital at 12:30. do you see a problem here? 12:30. naptime. yah. you don't do well without sleep. that has been proven in the last two months. you were fine when we walked into the hospital. they gave us all stickers to wear. but you quickly lost it after that.doesn't daddy look amused in this picture?
after we got you dressed in your cute little gown {remind me again how i forgot to take it home with us}, your friend kathy joined us. kathy is in our ward and she's also the lds chaplain at stanford hospital. she loves you. and you love her. she calmed you down in three seconds flat. it was incredible! after you were calm, a really nice nurse came in and explained everything to us. we walked to another room where they got some of your health history and then gave you some versed orally. that means through your mouth. sorry, no big words here. the nurse said versed either makes you sleepy or silly. i guessed you'd choose silly. i guessed wrong. you were one sleepy leah!after you were sleepy enough, daddy carried you to another room where they gave you this "watermelon gas" to put you completely out. that's when i lost it.
i tried to cry quietly. the nurse called me out on it. and then it was all over. she asked if i wanted to kiss you and then say goodbye. um, yes, but not to the latter. it was so strange to see you so still on that bed with a mask on your face. i knew you were sleeping...but not because you were tired. i was scared. even though i knew you'd be okay. i was scared.
good thing you were brave.
daddy and i went to the cafeteria while you endured who knows what. at least you won't remember it right?
about 45 minutes later, they called us back to see you. you were OUT. out i tell ya! i think two months of no sleeping finally caught up with you. when we finally aroused you enough to partake of our popsicles and apple juice, we got you dressed and brought you home. you kept pulling the funniest faces. included this one with your lips: you sleepily sat on the couch with daddy watching some movies. and then you fell alseep. daddy and i were amazed with how brave you were. you went under beautifully and came out beautifully.
and today you were a dream! so much that daddy thinks you should get an mri every day. not really. he's just kidding. but you ran around like a crazy person all morning - like you were glad we actually let you run around or something. and you ate like a starving monster - like we had starved you the day before or something.
we don't have the results yet, but hopefully they come back with one beautiful looking brain. it makes sense: a beautiful brain for a beautiful girl, right? right.
Tonight you had a rough night. I put you to bed a little before 8:00 p.m., and you screamed in your crib. This wasn’t any trivial scream – it was blood curdling. I felt so bad. I went and picked you up. Your little body was trembling. With each scream you completely tensed. You scraped and clawed at whatever was around (mostly my face, arms, and one not-so-lucky missing tract of skin on the back of my neck). I’m sure you were in some kind of pain. I hate when you’re in pain. It almost doesn’t seem fair that someone as sweet and perfect as you should have to suffer pain. But I guess we all have different things we need to learn in this life don’t we? Here are a couple things I’ve learned (you’ve taught me) so far:
1.Without you, I could never have imagined what it feels like to be completely head-over-heels for someone so small.
2.You’re in the process of teaching me patience – you’re a pretty tough teacher. But like many tough teachers, I’m expecting to learn far more than can be expected otherwise.
3.You’ve allowed me the chance to let my emotions flow. I don’t cry often, but thinking of you often brings tears to my eyes.
4.Your hugs melt me. They are the sweetest things on earth. Oh how I love when I squat down and throw my arms open and then watch as you stop in your tracks, turn toward me, and run as fast as your little legs will carry you until you collapse in my arms.
5.You will always fit in my arms…always.
6.You’ve taught me what is important. When I found out about your diagnosis, the whole world faded away.
have i ever told you that you like taylor swift? you do. a lot.
you like her so much that her fearless cd has been in your cd player in your room for months now. and it's all you ever listen to. and you listen to it a lot. all-day-long a lot.
i will officially say you are obsessed. obsessed.
first thing in the morning when you get out of bed, the play button is pushed. then pause. then play. then pause. then play. then forward. then forward. then reverse. then stop. then play. then pause. then play. then repeat. then, after i realize we've listened to the same track for 34 minutes, i un-press repeat and the pattern continues.
actually, there is no pattern. you just likes to push buttons. and you like taylor swift, so it's a great combination.
today, you decided to scream bloody murder and shed crocodile tears before your nap. for an hour. we sat for awhile {aprox. 50 minutes} while i held you down {so you wouldn't mutilate yourself...or me for that matter}, you started to calm down after these 50 or so minutes. we were listening to "hey stephen." the next track came on and you got a bit agitated. so i turned it back to "hey stephen." and then i did it again. and again. and again. probably 14 times. you slowly started to close your eyes {then open them...then close them again} until you were out. really out. as in pick-up-your-arm-and-drop-it-like-a-wet-noodle out. and then i successfully transfered you to your crib. and then turned off the cd player.
i have to admit: although i don't love your crying, i love that i was able to help you fall asleep in my arms. that doesn't happen very often. it never has. you've always been kind of an independent gal when it comes to sleeping. the past few months have changed that. but today i welcomed the opportunity to cuddle.
your tears made me so sad today. so sad, leah. i hate to see you in pain. i'm not sure what causes it. and i'm not sure how to help you feel better. but i'll keep trying.
i'm glad i could help you today.
and i'm glad taylor was there to help too. and stephen.
today i made you a blog. well, really, it's a blog for all my letters to you. i write you a lot of letters. that's just the way my mind works. sometimes i write them down, sometimes i don't. and i'm always sad when i haven't written them down. so, this is a blog to solve that problem. i have some old letters that i'm going to post first and then i'll add new ones. hopefully you like it. i sure like you.
dear fat, ugly lady we saw at the blood lab this morning,
i hate you. i think you should burn in the deepest, darkest abyss. you are very mean.
did you think it was okay to mutter under you breath today {definitely knowing i could hear you} about how i should listen to my child and just give her some attention? did you think that because you saw about two snippets of our lives this morning, you know exactly how to fix whatever you think our problem is?
did you know that five seconds before your extremely large self waddled through the door this morning i had been reading to my child while she lovingly pinched, hit and scratched me? did you know that i patiently took her abuse while warning her that if she continued to do it i could not have her sit on my lap?
i bet you felt pretty dumb when i turned to you and said, "really? really!?" right to your face after i heard your profound mumbles. in fact, i KNOW you felt pretty dumb because you wouldn't look me in the eye for the rest of the time we were there.
you wouldn't look me in the eye when you sat across from that sweet little child screaming her lungs out because the tech couldn't find her vein, so she poked and prodded and poked and prodded until she finally had to poke the other arm to get the sample.
i'll bet you didn't even think that no matter how hard i tried to get her to stop, maybe she was just mad because she had to go without food for the last 12 hours. from the looks of you, i can't imagine the last time you went 12 hours without food.
i bet you have no idea how many times that little girl has had to go to the doctor's office and blood lab...and how many times her mom has had to sit there and watch. you probably can't guess that she has been poked numerous times to try and figure out why she struggles so much from day to day. i bet you didn't even think that she might be screaming and hitting and scratching and pinching because she HATES that place...almost as much as i hate you.
i'll bet i CAN guess why you were sitting in the chair, but i won't. because that's just rude.
Today you are two and half years old. I can hardly believe it. Since I haven’t been so good during your second year of life to record your monthly goings-on, I’m going to try that now. But I’ll warn you…I’m going to start with the bad and the ugly…and it’s not a short list.
You are VERY much two years old. My word. You can throw a tantrum like the best of ‘em. Betteranywhere. To be completely honest, I’m surprised with my patience during these episodes (most of the time). Your dad’s too. Once in awhile we get a little (or really) angry, but usually you’ll see us speaking to you very calmly, singing a song, rocking you or just watching you as we are bombarded with sheer meanness on your end. than the best of ‘em. Some of my friends think their kids throw tantrums, and, while I would never want to make them feel bad, their kids’ tantrums don’t even hold a candle to yours. You kick, you hit, you scream, you pinch, you bite and you flail. You usually end up as a sweaty ball of Leah when you’re finally done. Sometimes you’re not done for HOURS. You don’t care if we’re in the privacy of our own home, with good friends or family, or out in public. You are willing to throw those signature tantrums
At your second birthday, you could say quite a few things, including “toot” (two) and “ee-uh” (leah). You knew mommy, daddy and a few other people like Sarah and Jack and you used lots of words to describe your surroundings. You copied most of the simple words you heard even if you didn’t know how to use them in context. You even said “opatus” for octopus! You knew LOTS of animal sounds like dog, horse, snake, crow, hippo, elephant, duck and lizard. Since then, your language has dropped off the face of the Earth. No one is sure where it went or how to get it back, and that scares us. You have highly qualified neurologists and pediatric specialists completely baffled. You seem to speak your own language, which we like to call Leahnese. I’m pretty sure you’re the only one who understands it. It usually consists of babbles and sounds, but occasionally we get an “eat”, “please” or “oh no” thrown in there. You do know how to say “beep beep” for car as well as how to say “dolly” – but that can actually mean dolly, doggy or daddy. It’s kind of a wild card. My favorite is “nonny.” You say this all the time and NO ONE can figure out what it means. We’ve even offered monetary prizes to anyone who can really get to the bottom of it…and we still have our money.
You still love, love, LOVE to read books. However, you’ve digressed in this area as well. You prefer books to everything else in the house, so much that daddy has threatened to take away all of your books so you will actually do something else. I’m serious. Just test him. He’ll do it. You no longer just read or flip pages in books. You massacre the pages and seem to think that books are a new delicacy to be enjoyed at any hour of the day. You are always hungry for a book. Chunks are bitten out of nearly all of our beloved board books now. Thank you. Your favorite book at two was “Where the Wild Things Are” by Maurice Sendak. You are able to finish two of the sentences all by yourself: “And it was stil…HOT!” and, “And Max said…NO!” Currently, your favorite book is “The Sneetches” by Dr. Seuss. You can also finish a few sentences in this book for us, including: “He hiked right on past them without even…TALKING” and “My friend you can have them for three dollars…EACH!”
At two, you were getting pretty good at feeding yourself with a fork or spoon. You ate you own cereal in the morning and were especially good at foods that adhered to utensils like applesauce, oatmeal and yogurt. You liked to eat…a lot…and were relatively pleasant at meal times. This, too, has been lovingly tossed out the window. Currently you despise sitting in your seat at all. You just won’t do it. When we put a bowl or plate of your food on the table for you to eat, you immediately pick it up and use it as a Frisbee – even if you really do want to eat the food. I have resorted to spoon feeding you your cereal in the morning while you sit on my lap. It greatly decreases our productivity, but it gets you fed and it keeps me sane. The rest of your food is currently consumed with your 10 little fingers…if it’s consumed at all (you’ve gone to bed hungry more than a few times recently). It’s not something I’m going to battle right now. We have other worries…
Because of all of these worries with your delays and reverse development, you qualified last May for school through the state of California – an Early Start program. You have an excellent teacher named Jan who has two aides named Patty and Helen. You love all three of them and they love you. But you baffle them too! Most of the kids in your class have Down’s syndrome. They are sweet as sweet can be. And you seem to be their protector. Once when Penny, one of your classmates, was eating paper, Jan took the paper from her (for her own safety, remember) and replaced it with a toy. Penny didn’t seem to like this idea and started to cry. You promptly walked over to Penny, gave her a hug, walked over to Jan, hit her in the arm, and then walked back over to Penny to continue hugging her. Although I don’t approve of hitting, that is pretty dang cute. At school, you love snack time and singing time, although you’ve decided that it’s not necessary to join the group for singing. You wander around and when you’re interested in a song, you come and stand (not sit) in the circle. I have NO idea where you got you stubborn streak. J
Sadly, you have stopped letting me do you hair. Gone are the days of delicious French braids and delectable pig tails. I maybe get to put a clippy in your hair in the morning and once in awhile (if you are completely distracted and otherwise happy), I can get some sloppy nubbies in. I’m sure this is just a phase. This better be just a phase.
At two years, you were becoming a budding artist. You loved to color (despite the occasional crayon to mouth incident) and you were just discovering play-do. I’ve tried and tried and tried to continue this love – to no avail. You have no interest in anything art unless it’s headed toward your mouth. When I picked you up from nursery on Sunday you had a fluorescent green glow emanating from you mouth. Yup, it was a crayon. You seem to want to do other things with your fingers, like cross them in ways I thought previously unattainable. It is a big worry for your dad and I (and lots of other people who love you), so we’re doing all we can to figure it out.
Which brings us to the good: two and a half years ago, your dad and I had crossed the bay area off of places to live due to cost of living. Somehow, we ended up here…and I’m beginning to think that you had a lot to do with our decision even though I didn’t know it at the time. We are surrounded by world renown medical technology here, including Stanford University. We have also had many small miracles come into our lives just by people we know: people in our ward, parents of piano students, and more. There are so many people who love you and want the best for you; they are willing to all they can to make sure that you are taken care of and for that I will be forever grateful. There is nothing that I want more than a happy little Leah.
One thing that has made us ALL happier this year is your increased mobility. You started to stand up all by yourself in mid-March. Throughout the month, you mastered your ability to walk while lightly holding onto something: my finger, a ribbon, a dishtowel, a pen. On April 3rd (two days after I pulled an excellent April Fool’s Day joke on everyone), you decided to take you very first step unassisted. Okay, your first TWENTY SIX steps unassisted. There was sheer thrill in your voice. The Layton household was full of laughter, smiles and tears that night. And we haven’t stopped smiling at your mobility since. You are definitely still wobbly, but you are getting better at walking on uneven surfaces, climbing stairs, playing on the playground and walking over obstacles. You even started to try to run this summer and you get better at it every day. Ah, I’m smiling right now just thinking about it. You were 771 days old (26 months).
There is one thing that has stayed the same during your whole life and that is your sleeping. Three cheers for Leah’s great sleeping! For the most part, you sleep about 12 hours at night straight and you usually take a 1.5-3 hour nap. I have to admit, I love those three-hour-nap days. You will also sleep pretty much anywhere. We’ve taken you to friend’s houses, you’ve slept in other cribs and pack and plays and you also do pretty well sleeping in a tent while camping. While you sleep, it’s imperative that you have your essentials: dolly and blanket. Dolly was given to you by Grandma Hauley and you haven’t let go of it since about one year. You secure your pointer finger in dolly’s well-worn tag, you hold her close to your face and you even eat her. You love her so much that I’ve had to re-stitch the hand back on (she will forever be missing part of it) and she is starting to get holes in her face! But, it’s all worth it because she has such a calming effect on you. You get a big grin and your whole body just relaxes the moment you see her. Blanket was given to you by my college roommate, Morgan. It was used as an oversized swaddling blanket for awhile and now you can’t sleep without it. Good thing Morgan picked out cute fabric! I’m working on a quilt that will be used for you big girl bed. I just need to bind the edges and it will be ready. It might be a little while before you’re ready for a big girl bed, but when you are, your new quilt will be waiting for you.
You are an A+ TV watcher. This is good and bad, but since I monitor it, it’s mostly good. You love Sesame Street – especially Abby Cadabby (you even laugh like her!) and Super Grover. One of your favorite movies (and an instant calmer-downer) is “Abby in Wonderland” that Grandma Layton gave to you for Christmas. You also love the Backyardigans, much to Grandma Hauley’s and my delight.
You don’t really love to get dressed anymore, but you let me indulge in dressing you in frilly tutus and cute, ruffled shirts. You also have an infatuation with jeans. You love them. If you see them in your drawer, you want them on. Right then. Your feet finally grew this summer and we replaced the size fours you had been wearing for a year with all THREE pair of size five shoes the store had to offer at the time. Then you lost one, so you were down to two…lucky for us new fall styles are arriving in stores as we speak.
You are a wonderful piano player and you pour out your heart and soul on those keys; so much that we usually have to use the soft pedal. You give the sweetest kisses and are starting to give great hugs too. You cuddle with either me or daddy each night as we read you bedtime stories and you’re starting to be more cordial when we brush your teeth. You love to run around your room and just laugh and laugh and laugh…and then crash out of sheer exhaustion onto your big, green chair. You love the mirrored closets in your new room and you’re learning (the hard way) to not hit them all day long. You still love to listen to music and will give us a shimmy and a shake once in a blue moon. You love to hear Taylor Swift, Carrie Underwood, Rascal Flatts, Keith Urban, your New Orleans kids mix, John Mayer and lots of random songs on my iTunes mix.
You’ve started to help me in the kitchen a little bit. We pull up a chair and you stand by the counter and watch what I’m doing. You love watching me make smoothies (and then you like to drink them!) and you really enjoy seeing anything get mixed in our beloved KitchenAid mixer (your dad sure is a good gift picker-outer; he knew it would make us both smile).
In daddy’s words, at two and a half years old, you are “one big tantrum tangled up with lots of kisses – which makes it all worth it.” I think I’ll have to agree.
You are a sweet little girl and I love you with all my heart. I love you more than you can imagine and I just want you to be happy. It makes me sad when you are sad or frustrated and can’t tell me what you want and need. It makes me sad to think that you might have challenges in this life that no parent would ever want their child to have. And yet, I think you just might. But, I know Heavenly Father sent you to me for a reason. We both agreed to whatever would happen to us in this life and He offered His help whenever we need it. And I think we’re going to need it a lot. I’ve learned over and over that even if I think I can do something alone, I can’t – I’m not supposed to. You help me and daddy and we help you and Heavenly Father helps us all. We can do it as a team. You have been an incredible addition to my life – one that I wouldn’t change for anything in the world. I love you to the moon and back.
I keep thinking, "I'm not old enough to have a child in school. You're not old enough to go to school." And then I remember I'm right. I'm not old enough. You're not old enough.
But it's not that kind of school. We still have a few more years for that one.
You started some schooling today through the state to help you with your gross motor skills and speech/communication delays. Two days a week for a few hours.
The teacher is great. The aides are great. The other kids are great. Two of them have Down's Syndrome. When I first saw them, I worried because I didn't think you were that far behind...but then I quickly realized there isn't any other group of kids with whom I'd rather have you spending time. They are beyond sweet.
So, here's to the first day of school. And progress. And new friends. And fun, new back-to-school outfits. You won't look so cute in the future. 'Arts and crafts' doesn't bode well with nice, new clothes. :)
my dear, sweet friend, dyan, watches you once a week while i teach piano. on wednesday i got an email from her saying that she was thinking about you a lot after she left on tuesday...and thought maybe it might help you walk if we tied a ribbon to your wrist so you couldn't let go, but we could slacken the ribbon, if needed. BRILLIANT {and an answer to a desperate prayer on monday night}. so i tried it that day and it WORKED!
yup, little turkey, you took 26 steps as your "first step"! today you were even standing up on your own and walking from there.
YAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAY Leah! We are so proud of you and all your hard work.
I just can't contain my excitement, so humor me for a sec:
You stood on her own today. Really! You did! It was only for a few seconds (5 tops), but it was HUGE. I was walking with you when I decided to switch my hand from holding onto your fingers to holding your wrist. That way, you couldn't hang on to me with your death grip when I wanted to let go. You was coming toward me and I let go...and you stood. On your own. All by yourself. No help from me whatsoever. YAAAAAAAAAAAAAAAAAAY LEAH!
When you were finished, you crouched down rather than completely falling. YAAAAAAAAAAAAAAAAAAY LEAH!
I screamed with joy. So you started to scream too. It was pretty funny.
Since i obviously don't have a picture of it, this will have to suffice. I think these are my favorite shoes you have ever owned. Love them.
hopefully everyone already knows this.
