Sunday, October 30, 2011

cape cod half

a few months back, on a short morning run with some friends, we were chatting about races. the longest races we'd run. how many. and why we liked races. michelle mentioned that she could never run a half. i disagreed. andrea had never run a half, but was interested. 

and so we started looking. 

we really wanted something on a saturday and it only left us with two options in the area. one in vermont that was a killer of a course. no thanks. the other was in cape cod. so we signed up. 

we were put on a wait list in positions 44, 45 and 70-something. so we figured we'd never get in and didn't think much of training. a week or two passed and we got a follow-up email saying we had moved up to positions 12, 13 and probably 30-something. there was something wrong with andrea's payment, so they told her if she fixed it, they'd allow her to run. and a day or two later, michelle got word that we were in. with just about a month to spare. 

so we started to train. we ran up to 8 miles, which was pretty much all we could do with our procrastination. but we felt okay about it. michelle was running to finish, not for a specific time, and i was running with her. 

the day before the race, we left our costumed munchkins at tuck with their dads to trick-or-treat and we headed south for a 3.5 hour drive. we got caught in friday night traffic in boston and stopped once to get some potatoes and chili before we reached our motel and settled down for the night. 
it's ironic that the one night we were without kids and had the opportunity to sleep in, we actually had to get up earlier than normal. i seriously considered skipping my morning "run" in exchange for some good, restful sleep. but we eventually opted to race. 

we were able to stay cozy inside of a school right up until the race started and then we were off. with our matching ear warmers, of course.
 {michelle, andrea and me. i swear i'm not wearing blush.}

it really was a great day to race. we were worried it would be too cold, but we were dressed warmly enough that there was just enough chill to keep us moving. andrea was on fire that day, and i could tell, so after a few miles, we sent her on her way. she finished 40 minutes before us! go andrea!! 

i gladly stayed with michelle. and was very impressed that, even with only 8 miles of training under her belt, didn't stop to walk until mile 11. my favorite comment was around mile 10 when a few people who had been behind us for miles slowly passed us. michelle turned to me and said, "how are these people getting bursts of energy at this point in the race!? they're starting to go so fast!" sadly, i had to inform her that they weren't going faster, we had slowed down. a lot.

speedy or not, we finished. and it felt great! 
almost as great as the new england clam chowder, warm roll and green salad provided to runners at the finish line. we hopped straight in the car and headed home to join our kids in more halloween festivities. it was a quick trip, but a success. i'll definitely be going back next year!

Wednesday, October 26, 2011

eeg take 2

per doctor's orders and leah's new and wonderful habit of seizing, we went in for an eeg to see what, exactly, is going on in that cute head of hers. 

this was to be another sleep deprived eeg. but this time we found a fantastic activity with which to occupy ourselves: dad's late night hockey scrimmage game. it was cold. and we were the only fans in the stands. but we cheered hard. and leah looked so cute all bundled up in her jammies, coat, mittens and hat. 
the day of the eeg, we only had to wait for a bit...
before the technician expertly and swiftly wrapped her up. she didn't like it much, but she got over it. 
and then quickly fell asleep. {probably due to her raucous late night at the hockey rink.}
i laid by her side in the dark while the monitors monitored and the tech typed. when she woke up, she had quite the 'do. she did a spectacular job: not seizing once in the eeg, but instead right after they turned off the machine and removed everything from her head. luckily, they still got what they needed. 

we hung out in the waiting room before our post-procedure appointment eating snacks and listening to taylor swift through our new pink headphones. it was a good day.
and when we came home, we both took a nap. after all, a sleep-deprived eeg for leah is also a sleep-deprived eeg for mommy.

Saturday, October 22, 2011

family pictures

we took some family pictures this morning. we missed the brights of the season, but still found some color. ryan was, as usual, super excited. actually, he was pretty excited i didn't make him shave. we did a little photo swap with another darling family. i took their pictures. my friend took ours. and in between we warmed the little ones noses in the cars. it worked perfectly. 

i think brittani definitely got some keepers for us. 

juuuuuuuuuuust kidding. she actually got some great shots. i won't tell you how many times we heard the words "leeeeee-ah, leeeeeeeeeeeeeeeee-ah" this morning. but it worked. has anyone else noticed how fast miss ribbons' hair has grown since the big cut in february!? she's a regular rapunzel {stay tuned for halloween...}

Friday, October 21, 2011

guest post: this little miggy stays home

every friday, readers of this little miggy stayed home are treated to an interview of a special needs parent. miggy, a special needs parent herself has made some great contacts and is so wonderful to share them with her growing blogging circle.

today, i was lucky enough to share my thoughts on being leah's mom as a guest poster on her blog. it's been a busy week, so the answers weren't all that profound, but i was happy to share a slice of our life and especially to spread awareness of rett syndrome during its awareness month.

if you're interested, head over and take a look at the post!

project 30 - it's just not in my hands

so i guess you can see that i took a little hiatus. it wasn't really planned. it just happened. somehow, all this month, i got myself involved with a new and time intensive church service position, a spot on the tuck partners board, a part time job and managing a four year old who started having seizures. awesome. what a way to turn 30!

in the midst of all the crazy, this month was wonderful. from sweet notes and kind words from friends to gifts and parties and celebrations galore {not to mention facebook}, to a weekend trip to new york city, i have felt truly loved. 

thinking back on my thirty years has been a great experience for me. i've found myself laughing on the phone with my mom and sister, having great conversations with my brothers, receiving messages from friends of my past...and being exhausted. it really was a lot of work. 

one night, i had just returned from running the reach the beach relay {a 200 mile relay in new hampshire} and was telling ryan about eating salt so runners don't cramp up in between runs. i retreated to the computer to write my daily post and, in the middle of recording my memory, i started crying. ryan could hear me from the other room and he ran in with a dish of goldfish {i love goldfish}. he said, "i heard you crying, which means your body is losing salt. so i'm bringing you salt so you don't cramp up." he's kind of hilarious. 

although exhausting, i'm super glad i actually recorded these memories. i have more that will have to come at another date, but i feel good about my start. and after looking at all 31, i've realized my life really isn't in my hands. is very apparent that my 30 years have been carefully cradled in Someone's hands. and this project was a good reminder of that.  

so with that note, i'm going to go get dinner ready and prepare for family movie night. updates will have to come later...

Saturday, October 15, 2011

blue sky girls

i'm going to come right out and say it: a lot of things connected to rett syndrome are hard for me. i know, i know. that sounds like an obvious statement. but i'm actually not talking about the day-to-day with miss ribbons. i'm talking about all the riff raff that goes on around us. the anger that some have in their hearts. the feeling that the world owes us something. the angst some have for others when they {gasp!} don't understand what we're going through. it's not that these thoughts never cross my mind, but when they do, they are fleeting. because overall, leah's struggles have only made me more aware that everyone is struggling. most definitely not in the same way. and sometimes not very noticeably. but i'm not always aware of their particular struggles, so why should they be expected to be aware of mine?

that being said, something else i struggle with is the way many people interact with leah. i understand that they might just not know how to approach her or engage her in conversation. and yet, part of me yearns for that complete acceptance and treatment that every normally developing child gets. no baby talk. no ignoring. no separation. just leah being a silly, smart, smiling four year old.

so, when something comes along that is overwhelmingly positive in nature, shows off leah's amazingly awesome work ethic, doesn't force me to beg others for money and still raises a bit of awareness, i'm all ears.

on october 15th, that happened. dr. sasha djukic, the director of the tri-state rett syndrome center at montefiore medical center had an idea. she wanted to host an event around the world to "celebrate rett syndrome month and the strength and will that girls with rett syndrome have shown to keep going no matter the odds and difficulties they face every minute of their lives."

and so, from helsinki to harvard, palm beach to pakistan, girls with rett syndrome and their families and friends climbed stairs - a symbolic gesture - because climbing stairs takes you upward and forward even if it is difficult. 

i love that. climbing stairs takes you upward and forward even if it is difficult. 

and let's be honest. stairs are ridiculously difficult for leah. we have 15 of them in our house and we spend a loooooooooot of time walking up and down them each day. some days it tries my patience. other days i relish in her small victories. there are days when i have to pull her up with my arms, lift her leg to get her started or stand directly behind her for some major support. but other days she just goes. recently she began to climb the last step all on her own - not even using my hand. and that, to me, is huge.

we met with 30 or so other girls {and one boy!} and their families, all wearing purple, and climbed the steps at harvard medical in boston. firefighters flanked our sides as we climbed, offering assistance to those who needed it. 
miss ribbons didn't need it that day. she had one hand in her dad's and one in mine and up and away she went...giggling the entire time. she had everyone in earshot smiling.

it was a simple thing - climbing a few stairs - and yet such a great moment. it was great to be surrounded by so many people choosing not to wallow in the weaknesses and struggles of our girls, but to celebrate their strengths. 
 we even got to see dr. mary from california who was in town for a short 24 hours. we love fairy mary!!

a bonus: on our way home we stocked up on goods from trader joe's and while stuck in traffic, we were basically parked by the finish line for the boston marathon. and that just made me happy. 

Wednesday, October 12, 2011

pumpkins shmumpkins

i try to do fun things with leah. really, i do. but sometimes she is dead set on making it miserable for everyone involved. 

today we went to pick pumpkins at our favorite farm.  the day started out like this:

then looked like this:

and progressed to this {you can't tell but she's actually screaming in this picture}:
eventually ending in full blown yelling and tears. 

seriously, i took about 30 pictures and there isn't one i deemed usable. her face {as show by her incredibly clean hands} was a mess of pumpkin dirt and boogers.

it was zero fun sir. i even got comments from my friends like, "i didn't know leah cried." and "i've never seen her like this." yup. it was that good. 

but rest assured, i have not given up. oh, we'll go pumpkin picking again next year. and the next year. and the year after that. whether miss ribbons likes it or not. because we WILL do fun things. even if i'm the only one who considers them fun.

Tuesday, October 11, 2011

leaf peeping

Leaf peeping: 
an informal term, commonly used in the United States, 
for people who travel to view and photograph the fall foliage 
in areas where foliage changes colors, particularly New England. 
The origin of the term "leaf peeping" is not well known. 
A similar custom in Japan is called momijigari.  

we'd been waiting for it for months. the brilliant colors that everyone was talking about. i'd see a peek here and a snippet of color there and get shivers i was so excited. we were told that the first weekend in october is always when it happens - when the leaves suddenly change and all of new england is a colorful playground. 

well, here's what the first weekend of october looked like.  
 {the view from my bedroom window.}

pretty, yes. but not really jaw-dropping. or at least not what i was expecting. that entire week we wondered, "did we miss it?" "was it just an off year?" "did the hurricane and floods have an effect on the foliage?" "this can't be what everyone was talking has to get better than this." 

and get better it did. we just had to wait a week. let the record books show that october 9th is the day it all went down. i went to bed on my birthday and woke up the next morning to a fall foliage wonderland. this, my friends, was the new view from my bedroom window. 
it was incredible. 

i'll stop now and let the trees do the talking. and no, i couldn't narrow it down.


Monday, October 10, 2011

birthday at the lake

on sunday after church, my two darling friends {see, they are darling, huh?}
organized a little get together at our favorite get-together-after-church lake. i will not say how many bowls of chips and salsa i consumed. i just won't do it. 

andrea made the most delicious key lime pie. we struggled a bit to keep the candles lit in the wind, but we eventually succeeded.

and then we ate and played some more. 
the weather and autumn scenery most definitely cooperated. 
a good time was had by all.
except leah.

as we were cleaning up, i was holding a semi-shivering miss ribbons when suddenly, out of nowhere, she threw up all over me, herself and the sand. twice. and then once in the car on the way home. and then once in the bathtub. and then three times on the couch {which we had brilliantly lined with blankets}. 

i ended my first full day of being 30 snuggling my little one for nearly two hours past her bedtime. as pathetic as she looked, i considered it a great way to end the day.