Tuesday, June 14, 2011

cheers to research to reality - bawston

{may 26-29, 2011}

again i find myself staring at the computer screen with fingers not moving. unable to adequately sum up my feelings after a weekend such as mine in boston for the annual international rett syndrome foundation conference. this post will most likely end up being too long, but there are a lot of emotions i'd like to record.

for starters, the train ride on the T from the airport to my hotel was the end of a horrific day of travel. i was exhausted and trying to figure out how i was going to adjust to a new time zone and stay awake for all the sessions at the same time. i hadn't seen leah in two weeks and i was only in boston to attend a conference all about her. 

i was more than excited to see "old" friends and hopeful to meet new ones. i was excited about learning new tips and techniques to implement into my day-to-day with leah, but terrified to perhaps learn what i have been doing for the past year and a half has been somehow incorrect or not enough.

and, again, i was just plain exhausted. 

i arrived in the late afternoon and had to find a drugstore. so after directions from the concierge, i dumped my compactly packed luggage and headed out for a nice thursday afternoon walk along the streets of boston. i picked up my necessities and then realized i was starving. so i stopped at a panera bread on the way home. after i ordered, i sat down, alone, at my table. after i got all situated and began to eat, i noticed a mother with her three young children sitting at the table next to me. i wasn't trying to eavesdrop, but they were close enough that i couldn't not hear what they were saying. the family was clearly headed out for a vacation of sorts the next morning, their father wasn't home from work yet so the mom decided to take the kids out for a special meal before they left. {undoubtedly because she didn't want to make dinner or clean the kitchen the day before leaving on a trip!} as i sat alone with my jumbled nerves, i listened to this mother and her three sweet children. the oldest, a girl, was in grade school. the middle, a boy was probably leah's age. and the youngest, another girl, was probably about 18 months old. this mother had her hands full, but it was the way she interacted with her children that made me think. as she helped them all with their meals she was ever-so patient. she asked them questions about their day and was truly interested in their responses. she asked them what they liked and didn't like about their days and why. she learned things about her children that i'm sure she never would have known had she not taken the time to ask...and listen. it was apparent that she was actively involved in her children's lives. a tear began to roll down my cheek. okay, it was more than one tear. i'm sure it was part exhaustion and part missing leah, but i really believe this mother was a gift sent to me to help me calm my nerves. she helped me to realize that so long as i was actively involved and interested in leah's day-to-day and overall well-being, we'll be just fine. as parents, none of us know how to make it through whether our kids are perfectly healthy or not. we just have to try. and when trying our best is all we can do, it is enough.

and with that, i headed back to the hotel, took the longest, hottest shower of my life and crawled into the most incredible fluffy white bed for the best sleep i'd had in two weeks. 

the next morning i was anxiously awaiting the arrival of some good friends from my vegas rettaway the previous summer. i took my time getting ready, even straightening my hair with a flat iron that hadn't worked overseas. i went downstairs to the lobby and began to text my friends who should have been near when one of them came up and gave me a big, giant hug. 

they took the red eye so erica went to take a nap while colleen and i sauntered through boston common. it was a beautifully warm day and it felt so nice to just be out in the fresh air. 

when we came back inside, we grabbed some breakfast {and erica some coffee} and met up with a few more friends. we registered mid-day and i received the leah-laden lanyard i'd wear all weekend. it definitely made me smile. 

my first big event was a tour through boston children's hospital's rett syndrome research lab. yes, they have an entire lab dedicated to researching treatments and a cure for rett syndrome. doctors and students and professionals who dedicate their days to bettering the life of leah. the thought of it made me cry more than once. erica and i both went on the tour and joked that we didn't say a word other than "wow" as we moved from room to room hearing explanations of what this particular person was doing with this particular piece of ridiculously expensive equipment. the picture below is one of many of a brain and the fascinating things they are learning about it. the tour was overwhelming and incredible at the same time. i'm excited that boston children's is going to be our stomping grounds for the next two years and that we get to rub shoulders with the likes of dr. omar khwaja and more.

on the tour i met a new mom from iowa whose daughter turns five this month and has been misdiagnosed since she was two. they received the official rett syndrome diagnosis one month ago and decided she should be at the conference. if that isn't the definition of a supermom, i'm not sure what is. i was most definitely NOT in an adequate emotional state to attend a conference one month after leah's diagnosis.

when we got back, we had afternoon tea at the hotel with even more friends. i'm certain the waiter wasn't fond of me because i didn't order tea. oh well. 

friday evening we attended the welcome address. to be sitting in a room full of parents, grandparents, medical professionals, teachers, therapists and more who are all interested in this horrible disease is indescribable. some of these individuals have been seeking answers for 50+ years. thank goodness for them. 

after the welcome session, i attended an informal breakout session for parents whose daughters are in leah's age range. we each introduced ourselves and our daughter(s) - one couple has a pair of identical twins with identical rett syndome mutations - and where we were from. i briefly mentioned that we were from california and would be making the move to new hampshire later in the summer. after the session, a mother from new hampshire introduced herself to me, wondering where in the state we would be moving. come to find out, we will live 10 minutes away from her and her 6 year old daughter. the next morning, this same mother introduced me to the preschool coordinator for the area where we will be living.  yes, you read that correctly. the women who had all of the answers to the questions that have been a big jumble in my head since ryan was accepted to dartmouth was standing right in front of me. she gave me a list of names and numbers and made sure i knew i could call her with any questions. and then she went on her way, leaving a teary-eyed maren in her wake. i was beginning to realize that tears would be a common thread woven throughout this weekend. 

friday night we ate at a pub nearby where i inhaled some of the most delicious clam chowder {er, chowda} i have ever had in my life. new england here we come. 

saturday was jam-packed. we missed breakfast because our beds were ridiculously comfortable, so we skipped some sessions about genetic testing and snagged a quick sandwich before heading into the keynote address given by dick hoyt. 

for those of you who aren't familiar with dick hoyt or his son rick, i urge you to become familiar. their story - team hoyt - is truly inspiring. unless you are completely void of feelings, you will most likely cry. erica asked me before the session started if i had my tissues {that came in our welcome bag - those irsf people are smart!}. i had left mine in the hotel room but was certain i'd be fine. i was completely and utterly wrong. i was a mess. but i felt a little better about my tears when dick himself got emotional while watching the video. rick competes in marathons and triathlons across the country with the help of his dad. dick, now 70, runs, swims and bikes with rick in tow. rick can't walk or do much of anything on his own. when he was born, the doctors said he would be a vegetable. dick told us, "we still haven't figured out what kind of vegetable he is." dick's whole message was "yes you can." and by the end, i truly believed that i could. rick, with the help of his trusty computer, said, "dad, when i'm running i feel like my disability disappears." for leah to feel that way for 10 seconds would be worth any effort of mine to make it happen. after the session, i bought his book and made sure to meet this man in person. fellow runners, eat your hearts out. 

the remainder of the day was spent in sessions ranging from the current state of research to communication to gastroenterology to therapies to neurology and epilepsy and more. it included others - like a sibling panel - that i didn't attend for fear of a total breakdown. 

saturday night we went to dinner with a fabulous group of girls and had an even more fabulous time where ann marie got a very fitting fortune in her cookie. 

after our bellies were filled, we headed back to the tribute reception. awards were given to various individuals for outstanding work in research, advocacy, awareness and more. my favorite quote of the night was from colleen who, when it was announced that an academy of young irish dancers would be our entertainment for the evening, said {dripping with sarcasm}, "oh great. watching a bunch of kids get up on stage and do all the things my daughter can't do is exactly what i needed tonight." i had to laugh at the irony, but all joking aside, these kids were amazing. the evening ended with another musical performance, a raffle and a tribute video of all of our girls {which, sadly, leah's picture didn't make it into by accident}. 

after the reception we headed to cheers. i was merely planning to get a good foot shot, but i also found a fantastic root beer to bring home to ryan for our root beer taste testing ritual with the harmans. it was a perfect ending to the night. plus, the cheers theme song is also the unofficial rett syndrome theme song - we decided that last year.

making your way in the world today takes everything you've got. 
taking a break from all your worries sure would help a lot. 
wouldn't you like to get away?...
sometimes you wanna go where everybody knows your name. 
and they're always glad you came. 
you wanna be where you can see our troubles are all the same. 
you wanna go where everybody knows your name.

sunday morning i attended a few more incredible sessions on communication, literacy and mid- to high-tech devices to enable that communication and literacy and i learned a lot. we're hoping to continue in that direction in the next few years and get our hands on something that will really work well for little miss leah. i had to head out early to catch my flight and missed one of the sessions i wanted to hear the most on the igf-1 clinical trial. but from the reports i heard, the trial is going fantastically and we are definitely one step closer to treatments for our girls. that makes this mom smile. 

my flight home was awesome and to top it off i was met at baggage claim by the handsomest of husbands and the cutest of little girls. i was a little afraid leah might not remember - or care - who i was after 17 days away, but those fears were swept away when she giggled and leaned in to kiss my salty cheeks. it was good to get away and great to take a break from my worries {or understand them a little more}, but it was even better to be home sweet home. 


Zenaida said...

Why am I crying??? I don't know, but for some reason this post has that effect on me. Thank you Maren! I was so upset I didn't make it to the conference but I almost feel I was there :)

Erica said...

only one thing that I didnt like about this post-the big fat reminder that you are moving! i loved the rest of it! how did you photoshop that pic of me so that I didnt look the way I felt?

Jessica M said...

What a fantastic mom you are Maren, giving yourself the information you need to better meet the needs of your child. So glad that you found more help and direction for your life in your new home state.

Bethany said...

Reading this post left me teary. Thanks for sharing such personal things and letting us admire how you do what you do.

Colleen said...

I am so proud of you. For being a first time attendee you did great! I don't remember one bit of my first one. You are a great mother!!!

Emily said...

The conference sounded AMAZING! I can't even imagine. I will def. think about going to one in the near future. And TEAM HOYT!? I LOOOOOVE them. I think I've watched every video I can find on them and I read his book too. Makes me cry every time!

Lindsey Harman said...

Very interesting to read about. I'm so glad you have friends to support you and who understand first hand. I can try and understand, but feel like I fail to fully get everything involved with Retts. Sounds like u are educating yourself well.
Are those bunko shoes I see? ;)